Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 Gloria..please do not unsubscribe...I much look forward to reading your posts..and I very much like Canadian's and their humor, country, government, etc...don't allow some to get under your skin..I do not know how the rest of the group feels, but I will be bummed out if you leave..my e-mail is daveliltoe@... you do leave you are welcome to mail me at anytime...I think the group will lose out if you leave, but like said, you can mail me at anytime, and write whatever you wish...peace, Dave ________________________________ To: livercirrhosissupport Sent: Friday, September 4, 2009 4:10:57 PM Subject: Re: (unknown) Well Mac - it seems that you are hell bent on finding fault with anything I say, thus, don't worry your head about it any longer. I'll just unsuscribe !!! My whole message had nothing whatsoever to do with " Boat People " or your opinion that I am defaming any sect, domination, colour or creed. That is absolutely not who I am!!! I am so Canadian that the beliefs or the colour of one's skin just does not make a hill of beans. My reference to " Boat People " wouldn't be much different than the news we hear constantly about the numbers of your illegal aliens. A great deal of those Boat People went on to become excellent citizens of this country!! How do you think you could possibly help me with my post on anything to do with the Canadian Health Care?? So, as soon as I finish reading the other posts - I'll un-subscribe. ____________ _________ _________ __ Gloria, I understand you are fustrated with your health care system. But I'm sorry, the term " Boat People " I find a bit offensive. If you want to to talk about Cirrhosis and liver disease as it relates to health care cool. But to disparage people with terms like " boat people " is unacceptable in this group and forum. This group is for advice and love and compassion. A place to share our stories and gripes without offense. This group is for support not ridicule. Its for helping others by sharing information not defaming. I wish I could have helped with your post but you didn't specify a specific problem but generalized the problems with your health care. MaC > > LOL Doesn't matter what government or what section of the government they work for either. I used to work for the Provincial Government when I was very young and at the end, I was working for our Medical Services Plan. Lawd, the absolute worst place to be if you've got any intelligence whatsoever. I quit that job and took a big pay dive, just so that I could go home at night, feeling better about myself. > > I believe that when a person applies for a job with the Canadian government that your position will be delegated to you according to your intelligence level. If you've got a little bit, they'll maybe give you a position behind the scenes in the technology section. If you can just pass the intelligence test, lo and behold you can get a job at Revenue Canada. However, if you fail the test altogether, never fear - they'll give you a job in the GST section. > > The best one that I had to deal with to this day, was a sub-species of the Immigration Board. Their phone system was certainly not designed for use by anyone that didn't have a commanding level of intelligence and spoke English clearly. When I was finally able to speak to a real person, the first thing I said was " I'm so glad that I was born in this country to get through that garbage " . The whole reason for my call was that a client who had been receiving Canada Pension was turning 65 and due to apply for the Old Age benefit. However, they'd decided to change some rule and she was supposed to prove the plane that she flew to get here from Spain, actually landed in Montreal and that she had a paper to prove that!!! I said, good lawd, she's been getting CPP for almost 5 years, of course she must have landed. But, nope, I had to send for another stupid document to prove that... She had kept every passport that she'd ever had, even the Spanish one > that she had when she emigrated here. The only paper she'd probably ever mislaid was the stupid Landing Document. So, another $35.00 and 4 months later, we had the document to prove that the plane did indeed land!!!! > > I might understand all of that, if I thought for a moment that one of our numerous boat people were trying to apply; but, they don't have to - once you actually come ashore, the Canadians will give you Welfare and cover your medical until you can get on your feet!!! This lady, her husband and four living children could all prove without a shadow of doubt how hard they worked in Canada and for how many years, just by checking their CPP. Thus, it seemed so bureaucratic to have to go through all of that. > > Gloria > > > > > ____________ _________ _________ __ > > > Seems they don't change much no matter what government they're employed by, huh?! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 31, 2009 10:19:23 PM > Subject: Re: (unknown) > > > LOL I had the same experience today dealing with Revenue Canada on behalf of a client. I had talked to one agent earlier last week about this fella's Corporate Tax and she was giving me another 45 days to complete everything. Then I spoke to a different agent; but, same office last week regarding his GST. Then I get another call from an agent in a different location again about his GST. In the meantime, he (the client) threw a kink into the whole thing by calling them himself. So, I called the first lady back and had to tell her the whole conversation we'd already had last week and this just confused her to no end!!!! I hate dealing with government employees!!! !!!! > > ____________ _________ _________ __ > > Hello everyone..I haven't been on here much lately..I think I told you all my endoscope was good, with several small varices, but not large enough for banding...my MRI said I was to call 3 days after to get results, but I haven't called them yet..I kind of figured if there was anything found my doc. would eventually call...since he has not I'm assuming the results were good...tonite when checking my mail I had three letters from social security administration. ..the first two I opened were from there center in land stating I was being enrolled by them in a prescription drug plan chosen by them and would receive generic scripts for $2:10 each and brand names for $3:10, because of my income level...sounds really good, I thought...the 3rd letter was from social security in Kansas City stating I made to much to receive prescription medicine help! figure that one out..guess I will take the letters to local office to decipher..I hope you are all doing as > well as possible...have any of you all had letters like these? Kind of like the left hand not knowing what the right hand is doing. I'm hoping the difference will be Medicaid not helping with scripts, and Medicare helping, but since all are from SSA who know's. I don't write much here, but I always read comments, and much appreciate this chat line being available. peace, Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 Gloria, That would be an overreaction. There is no need to unsubscribe. I think you have a lot to offer to the group. But please understand my point view. This is a discussion group after all. If you disagree with me that is fine. You don't have to leave to prove that point. It just seemed to me that there was a tone or label to illegal immigrants etc which can be perceived as inflammatory. That's all. Please don't take that personal. For me the term Boat People or " FOB " Fresh Off The Boat, is derogatory and condescending. Everyone deserves some type of respect. Well Mac - it seems that you are hell bent on finding fault with anything I say, thus, don't worry your head about it any longer. I'll just unsuscribe !!! My whole message had nothing whatsoever to do with " Boat People " or your opinion that I am defaming any sect, domination, colour or creed. That is absolutely not who I am!!! I am so Canadian that the beliefs or the colour of one's skin just does not make a hill of beans. My reference to " Boat People " wouldn't be much different than the news we hear constantly about the numbers of your illegal aliens. A great deal of those Boat People went on to become excellent citizens of this country!! How do you think you could possibly help me with my post on anything to do with the Canadian Health Care?? So, as soon as I finish reading the other posts - I'll un-subscribe. ____________ _________ _________ __ Gloria, I understand you are fustrated with your health care system. But I'm sorry, the term " Boat People " I find a bit offensive. If you want to to talk about Cirrhosis and liver disease as it relates to health care cool. But to disparage people with terms like " boat people " is unacceptable in this group and forum. This group is for advice and love and compassion. A place to share our stories and gripes without offense. This group is for support not ridicule. Its for helping others by sharing information not defaming. I wish I could have helped with your post but you didn't specify a specific problem but generalized the problems with your health care. MaC > > LOL Doesn't matter what government or what section of the government they work for either. I used to work for the Provincial Government when I was very young and at the end, I was working for our Medical Services Plan. Lawd, the absolute worst place to be if you've got any intelligence whatsoever. I quit that job and took a big pay dive, just so that I could go home at night, feeling better about myself. > > I believe that when a person applies for a job with the Canadian government that your position will be delegated to you according to your intelligence level. If you've got a little bit, they'll maybe give you a position behind the scenes in the technology section. If you can just pass the intelligence test, lo and behold you can get a job at Revenue Canada. However, if you fail the test altogether, never fear - they'll give you a job in the GST section. > > The best one that I had to deal with to this day, was a sub-species of the Immigration Board. Their phone system was certainly not designed for use by anyone that didn't have a commanding level of intelligence and spoke English clearly. When I was finally able to speak to a real person, the first thing I said was " I'm so glad that I was born in this country to get through that garbage " . The whole reason for my call was that a client who had been receiving Canada Pension was turning 65 and due to apply for the Old Age benefit. However, they'd decided to change some rule and she was supposed to prove the plane that she flew to get here from Spain, actually landed in Montreal and that she had a paper to prove that!!! I said, good lawd, she's been getting CPP for almost 5 years, of course she must have landed. But, nope, I had to send for another stupid document to prove that... She had kept every passport that she'd ever had, even the Spanish one > that she had when she emigrated here. The only paper she'd probably ever mislaid was the stupid Landing Document. So, another $35.00 and 4 months later, we had the document to prove that the plane did indeed land!!!! > > I might understand all of that, if I thought for a moment that one of our numerous boat people were trying to apply; but, they don't have to - once you actually come ashore, the Canadians will give you Welfare and cover your medical until you can get on your feet!!! This lady, her husband and four living children could all prove without a shadow of doubt how hard they worked in Canada and for how many years, just by checking their CPP. Thus, it seemed so bureaucratic to have to go through all of that. > > Gloria > > > > > ____________ _________ _________ __ > > > Seems they don't change much no matter what government they're employed by, huh?! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 31, 2009 10:19:23 PM > Subject: Re: (unknown) > > > LOL I had the same experience today dealing with Revenue Canada on behalf of a client. I had talked to one agent earlier last week about this fella's Corporate Tax and she was giving me another 45 days to complete everything. Then I spoke to a different agent; but, same office last week regarding his GST. Then I get another call from an agent in a different location again about his GST. In the meantime, he (the client) threw a kink into the whole thing by calling them himself. So, I called the first lady back and had to tell her the whole conversation we'd already had last week and this just confused her to no end!!!! I hate dealing with government employees!!! !!!! > > ____________ _________ _________ __ > > Hello everyone..I haven't been on here much lately..I think I told you all my endoscope was good, with several small varices, but not large enough for banding...my MRI said I was to call 3 days after to get results, but I haven't called them yet..I kind of figured if there was anything found my doc. would eventually call...since he has not I'm assuming the results were good...tonite when checking my mail I had three letters from social security administration. ..the first two I opened were from there center in land stating I was being enrolled by them in a prescription drug plan chosen by them and would receive generic scripts for $2:10 each and brand names for $3:10, because of my income level...sounds really good, I thought...the 3rd letter was from social security in Kansas City stating I made to much to receive prescription medicine help! figure that one out..guess I will take the letters to local office to decipher..I hope you are all doing as > well as possible...have any of you all had letters like these? Kind of like the left hand not knowing what the right hand is doing. I'm hoping the difference will be Medicaid not helping with scripts, and Medicare helping, but since all are from SSA who know's. I don't write much here, but I always read comments, and much appreciate this chat line being available. peace, Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 No Mac - perceive it any way you would like !!! You managed to pick one phrase out of my whole post and want to make some kind of big deal over it. However, you have more power on this site than I do and I will not fall into having some kind of public debate like someone who's begging, cause I have no where else to go. You can just carry on and find fault with others peoples so called inflammatory opinions, mine just will not be there to upset anyone. My time is very limited because I too suffer from liver cirrhosis and currently about 30 weeks into my second treatment, only this time it's the Trio. I also still try to run my bookkeeping business about 30 hrs per week. So, I simply don't need for you to criticize me so quickly !!! I am away to sensitive right now and I don't see where you treated me with as much compassion as you do about defending some perception of your own that I might be hurting somebody's feelings. I am definitely not known to be one iota racist and if you actually knew me you would know that instantly. So, I'm just as happy to stick to the one group that doesn't seem to have such a problem with me and my babbling at times. Gloria ________________________________ Gloria, That would be an overreaction. There is no need to unsubscribe. I think you have a lot to offer to the group. But please understand my point view. This is a discussion group after all. If you disagree with me that is fine. You don't have to leave to prove that point. It just seemed to me that there was a tone or label to illegal immigrants etc which can be perceived as inflammatory. That's all. Please don't take that personal. For me the term Boat People or " FOB " Fresh Off The Boat, is derogatory and condescending. Everyone deserves some type of respect. Well Mac - it seems that you are hell bent on finding fault with anything I say, thus, don't worry your head about it any longer. I'll just unsuscribe !!! My whole message had nothing whatsoever to do with " Boat People " or your opinion that I am defaming any sect, domination, colour or creed. That is absolutely not who I am!!! I am so Canadian that the beliefs or the colour of one's skin just does not make a hill of beans. My reference to " Boat People " wouldn't be much different than the news we hear constantly about the numbers of your illegal aliens. A great deal of those Boat People went on to become excellent citizens of this country!! How do you think you could possibly help me with my post on anything to do with the Canadian Health Care?? So, as soon as I finish reading the other posts - I'll un-subscribe. ____________ _________ _________ __ Gloria, I understand you are fustrated with your health care system. But I'm sorry, the term " Boat People " I find a bit offensive. If you want to to talk about Cirrhosis and liver disease as it relates to health care cool. But to disparage people with terms like " boat people " is unacceptable in this group and forum. This group is for advice and love and compassion. A place to share our stories and gripes without offense. This group is for support not ridicule. Its for helping others by sharing information not defaming. I wish I could have helped with your post but you didn't specify a specific problem but generalized the problems with your health care. MaC > > LOL Doesn't matter what government or what section of the government they work for either. I used to work for the Provincial Government when I was very young and at the end, I was working for our Medical Services Plan. Lawd, the absolute worst place to be if you've got any intelligence whatsoever. I quit that job and took a big pay dive, just so that I could go home at night, feeling better about myself. > > I believe that when a person applies for a job with the Canadian government that your position will be delegated to you according to your intelligence level. If you've got a little bit, they'll maybe give you a position behind the scenes in the technology section. If you can just pass the intelligence test, lo and behold you can get a job at Revenue Canada. However, if you fail the test altogether, never fear - they'll give you a job in the GST section. > > The best one that I had to deal with to this day, was a sub-species of the Immigration Board. Their phone system was certainly not designed for use by anyone that didn't have a commanding level of intelligence and spoke English clearly. When I was finally able to speak to a real person, the first thing I said was " I'm so glad that I was born in this country to get through that garbage " . The whole reason for my call was that a client who had been receiving Canada Pension was turning 65 and due to apply for the Old Age benefit. However, they'd decided to change some rule and she was supposed to prove the plane that she flew to get here from Spain, actually landed in Montreal and that she had a paper to prove that!!! I said, good lawd, she's been getting CPP for almost 5 years, of course she must have landed. But, nope, I had to send for another stupid document to prove that... She had kept every passport that she'd ever had, even the Spanish one > that she had when she emigrated here. The only paper she'd probably ever mislaid was the stupid Landing Document. So, another $35.00 and 4 months later, we had the document to prove that the plane did indeed land!!!! > > I might understand all of that, if I thought for a moment that one of our numerous boat people were trying to apply; but, they don't have to - once you actually come ashore, the Canadians will give you Welfare and cover your medical until you can get on your feet!!! This lady, her husband and four living children could all prove without a shadow of doubt how hard they worked in Canada and for how many years, just by checking their CPP. Thus, it seemed so bureaucratic to have to go through all of that. > > Gloria > > > > > ____________ _________ _________ __ > > > Seems they don't change much no matter what government they're employed by, huh?! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 31, 2009 10:19:23 PM > Subject: Re: (unknown) > > > LOL I had the same experience today dealing with Revenue Canada on behalf of a client. I had talked to one agent earlier last week about this fella's Corporate Tax and she was giving me another 45 days to complete everything. Then I spoke to a different agent; but, same office last week regarding his GST. Then I get another call from an agent in a different location again about his GST. In the meantime, he (the client) threw a kink into the whole thing by calling them himself. So, I called the first lady back and had to tell her the whole conversation we'd already had last week and this just confused her to no end!!!! I hate dealing with government employees!!! !!!! > > ____________ _________ _________ __ > > Hello everyone..I haven't been on here much lately..I think I told you all my endoscope was good, with several small varices, but not large enough for banding...my MRI said I was to call 3 days after to get results, but I haven't called them yet..I kind of figured if there was anything found my doc. would eventually call...since he has not I'm assuming the results were good...tonite when checking my mail I had three letters from social security administration. ..the first two I opened were from there center in land stating I was being enrolled by them in a prescription drug plan chosen by them and would receive generic scripts for $2:10 each and brand names for $3:10, because of my income level...sounds really good, I thought...the 3rd letter was from social security in Kansas City stating I made to much to receive prescription medicine help! figure that one out..guess I will take the letters to local office to decipher..I hope you are all doing as > well as possible...have any of you all had letters like these? Kind of like the left hand not knowing what the right hand is doing. I'm hoping the difference will be Medicaid not helping with scripts, and Medicare helping, but since all are from SSA who know's. I don't write much here, but I always read comments, and much appreciate this chat line being available. peace, Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother...she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her..listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings...I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave ________________________________ To: livercirrhosissupport Sent: Friday, September 4, 2009 3:09:30 PM Subject: Re: (unknown) DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! KUDOS! ____________ _________ _________ __ From: dave dodds <daveliltoeyahoo (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 8:01:41 AM Subject: (unknown) Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended...just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Dave, there is no user agreement to govern this group. The owner has left it up to the three of us to moderate as best we can, and we have very very simple rules which are mostly common sense. Posting links to any products, asking for donations or other requests for money , which has actually happened, flaming each other, which happens about twice a year, and discussing politics and other divisive subjects usually gets a response from a moderator. If one member offends another, it is usually brought to the attention of the offender by the offendee, and apologies are exchanged, and that's usually the end of it, no moderator needed. I hope Gloria does not quit. I hope that trying to keep some kind of order here does not discourage people to post, but the reality is that every month there are more and more people who find us on line looking for support and answers. If this someone decides that things have gotten too strict, they might want to check out other support groups, and they might find one more laid back, but I have checked out many, and find almost all of them to be much much more strict. My wife joined a support group in 2002 after being diagnosed with Chiari malformation. She actually joined several, and they all helped shape her course of treatment. I toyed with the idea of starting my own group because our owner here , being a sufferer of end stage liver disease herself was unable to tend to this group when she was very ill, and there was grumbling among the members. One member actually got fed up with things and started another liver cirrhosis support group here at Yahoo. I belonged to both for a while until she disappeared from the web like a puff of smoke. My blackberry actually notifies me now in my own voice " some one just posted on the OLD support group " , 24 hours a day. I never changed it. I think about her when ever I get that notification. I am grateful to have been nominated to me a moderator here. This really is the best support group on the web in my opinion. I've tried a bunch. But it isnt the moderators who make it so special, it's the people who are the members! It's YOU, Barby, Jan, Abijann, ,Pamela,Lyncia, Penny, Qoya,Sharon, ( she quit by the way), Tilly, Phyliss, Jill , Maureen, ,MaC,, Gloria,, ,Debra,Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support group. They may have better graphics and features, but we have the PEOPLE. I dont make too many AA meetings these days because of the cigarette smoke and the transportation issues, but I feel like this group is the service that we in AA are encourage to do as a part of a program of sobriety. I know this does keep me very busy. Even if I dont post, I read evey singe one, even when I was in the hospital two summers ago. My black berry is on 24 hours, and often gongs in the middle of the night with Yahoo chat, and I end up having a conversation with someone I dont even know until the sun comes up. It is very very interesting, and also very rewarding. . I am really glad that most of the people here really do get the idea of what is appropriate, and what is not and it makes me sad any time someone quits. I was sad that my friend quit two years ago and started her own group, and then just disappeared. I am just really glad that we have a good mix here, my other support groups were dismal. Everyone decompensated, no humor, mean people, you name it. As MaC always says, it's all about the love. love, Bobby ________________________________ To: livercirrhosissupport Sent: Saturday, September 5, 2009 11:51:08 AM Subject: Re: (unknown) Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother. ..she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her..listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings... I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 3:09:30 PM Subject: Re: (unknown) DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! KUDOS! ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 8:01:41 AM Subject: (unknown) Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended...just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Bobby - and everyone. I also belong to two heart support groups and a kidney disease support group. There is frequently information which helps me deal with those problems. So, I am grateful for them. But this group is so different. I think it is the fact that it seems to be the concensus here that liver disease not only is in the body, but changes the whole life of the person who has it and the family and friends they have. And those changes are also addressed and supportive suggestions given. We are individuals here, but also family members. It is a real conundrum how I feel about this group. So many of the messages are about problems, asking for suggestions, asking for assurance that someone else had experienced the same thing, a lot of sad things, but when I open my emails, I get excited to see who has posted to here. Just like when I see something from one of my kids. Gloria, I hope you will stay. I am part of management of a couple adoption search and reunion groups. I hate it when some one decides to leave. I keep wondering what we did wrong. I would like to send an email asking why they quit. My co owner says don't worry about it, people just come and go. Here, we lose too many the way it is. We were just notified today that someone on our kidney group has died. I know when I went into the hospital for my bypass last year, I was asked to name someone who could update the people here on how I was doing. Just thought I would mention that for those of you who don't have someone now who can access your yahoo groups, it is a good idea to designate someone you can trust and give them your codewords, etc. Jan H On Sat, Sep 5, 2009 at 8:45 PM, Bob Aragon wrote: > Dave, there is no user agreement to govern this group. The owner has left > it up to the three of us to moderate as best we can, and we have very very > simple rules which are mostly common sense. Posting links to any products, > asking for donations or other requests for money , which has actually > happened, flaming each other, which happens about twice a year, and > discussing politics and other divisive subjects usually gets a response from > a moderator. > > If one member offends another, it is usually brought to the attention of > the offender by the offendee, and apologies are exchanged, and that's > usually the end of it, no moderator needed. I hope Gloria does not quit. I > hope that trying to keep some kind of order here does not discourage people > to post, but the reality is that every month there are more and more people > who find us on line looking for support and answers. If this someone decides > that things have gotten too strict, they might want to check out other > support groups, and they might find one more laid back, but I have checked > out many, and find almost all of them to be much much more strict. > > My wife joined a support group in 2002 after being diagnosed with Chiari > malformation. She actually joined several, and they all helped shape her > course of treatment. I toyed with the idea of starting my own group because > our owner here , being a sufferer of end stage liver disease herself was > unable to tend to this group when she was very ill, and there was grumbling > among the members. One member actually got fed up with things and started > another liver cirrhosis support group here at Yahoo. > I belonged to both for a while until she disappeared from the web like a > puff of smoke. My blackberry actually notifies me now in my own voice " some > one just posted on the OLD support group " , 24 hours a day. I never changed > it. I think about her when ever I get that notification. I am grateful to > have been nominated to me a moderator here. > This really is the best support group on the web in my opinion. I've tried > a bunch. But it isnt the moderators who make it so special, it's the people > who are the members! It's YOU, Barby, Jan, Abijann, ,Pamela,Lyncia, > Penny, Qoya,Sharon, ( she quit by the way), Tilly, > Phyliss, Jill , Maureen, ,MaC,, Gloria,, > ,Debra,Debbie,, Crazy Girl, Kim, its all of YOU who make this the > best support group. They may have better graphics and features, but we have > the PEOPLE. > I dont make too many AA meetings these days because of the cigarette smoke > and the transportation issues, but I feel like this group is the service > that we in AA are encourage to do as a part of a program of sobriety. I know > this does keep me very busy. > > Even if I dont post, I read evey singe one, even when I was in the hospital > two summers ago. My black berry is on 24 hours, and often gongs in the > middle of the night with Yahoo chat, and I end up having a conversation > with someone I dont even know until the sun comes up. It is very very > interesting, and also very rewarding. . > > I am really glad that most of the people here really do get the idea of > what is appropriate, and what is not and it makes me sad any time someone > quits. I was sad that my friend quit two years ago and started her own > group, and then just disappeared. I am just really glad that we have a good > mix here, my other support groups were dismal. Everyone decompensated, no > humor, mean people, you name it. > As MaC always says, it's all about the love. > > love, Bobby > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Saturday, September 5, 2009 11:51:08 AM > Subject: Re: (unknown) > > > Phyllis...thank you very much for the reply..I'm not trained in any type of > public speaking, other than the norm, and my primary caregiver, my Great > Grandmother. ..she was almost full Osage Indian, and her last name was > Speaker..I love(d) here as much as she does (did) me..she was supreme at > unconditional love..something I did not find again until I was 28 and had my > own baby..I have always taken great pride and love from my relationship with > her..listening to her stories, indeed just watching her..a small woman with > floor length raven hair...enough of my ramblings; mainly wanted to tell Mac > how difficult being monitor of a group must be..I do not envy your task..I > would not be able to control my ramblings... I'm not trying to suck up to > you, because you are a monitor...for one I'm not sure you are one...my days > of sucking up are over...I am at the 'take me as I am, or stay the **** away > stage'...Just hated to see Gloria leave, as she was a > constant and dependable member. Her responses were almost on as a daily > voice..I do not even know what your terms and conditions are anyhow..I > figure when I step over the line I will hear about it..good luck to you, > Gloria, Phyllis, etc. peace out, Dave > > ____________ _________ _________ __ > From: Phyllis Delgado <pdelgado354@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Friday, September 4, 2009 3:09:30 PM > Subject: Re: (unknown) > > > DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! > KUDOS! > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Friday, September 4, 2009 8:01:41 AM > Subject: (unknown) > > > Gloria, I was not personally offended about your remark, and realize that > is a common term used in many countries attributed to immigrants that arrive > in our countries, and many others, by any means possible.... In their case > often unsafe, overloaded boats...I do understand how some may be > offended...just so happens most early immigrants arrived in just such a > way...apparently some are offended by the term, as is their right...I have > found your entries here to be very compassionate and caring...is the topic > of immigrants related to health care? Very much so...so it must be the term > found non-appropriate, and hopefully not the effect that immigration has on > the health system..my reason for joining this group is to find a release, a > better understanding, etc. from those suffering with liver disease...much of > the release for me involves writing what is happening with myself, listening > to others telling their own circumstance, and very importantly and > paramount, comradery ...as one who is often offended easily, and often > wrong in perceived hurts, I must be vigilant in watching for justified and > unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Thank You all very much... Bobby, my husband Dave was at Emory and was evaluate for a Liver Transplant but was turn down because of me. What i didn't say early was that i;m a Quadriplegic with no support, no Family. just caregivers for myself since Dave took sick. This is the hardest thing to Hear when someone has Care for me for over thirty years. To know I'm to Blame because I can't physically Help. I;m manage to get Hospice to ease up the Medications and what I'm doing now is trying to get him home. I Have some good friends helping me fast track programs in order to achieve this. Nurses have told me once he is home to detox him and Dave could manage with a Attendant.. I Have recently learn i have Hep C also but this isn't about me, it about Dave. Dave hasn't had a liver biopsy yet and no one mention it lately but he no longer has Ascites. I Guess I'm looking for some Advise as what to expect Health wise or to be warned of any more blocks from the Hospice System. I'm not sure how much more i can take. I Need all the knowledge i can get in order for me to help my Husband. Again Thank You All, Bea I;m still very new at posting or even to Chat's, but will catch on Quick. Please bare with me. Subject: Re: (unknown) To: livercirrhosissupport Date: Sunday, September 6, 2009, 3:45 AM Dave, there is no user agreement to govern this group. The owner has left it up to the three of us to moderate as best we can, and we have very very simple rules which are mostly common sense. Posting links to any products, asking for donations or other requests for money , which has actually happened, flaming each other, which happens about twice a year, and discussing politics and other divisive subjects usually gets a response from a moderator.. If one member offends another, it is usually brought to the attention of the offender by the offendee, and apologies are exchanged, and that's usually the end of it, no moderator needed. I hope Gloria does not quit. I hope that trying to keep some kind of order here does not discourage people to post, but the reality is that every month there are more and more people who find us on line looking for support and answers. If this someone decides that things have gotten too strict, they might want to check out other support groups, and they might find one more laid back, but I have checked out many, and find almost all of them to be much much more strict. My wife joined a support group in 2002 after being diagnosed with Chiari malformation. She actually joined several, and they all helped shape her course of treatment. I toyed with the idea of starting my own group because our owner here , being a sufferer of end stage liver disease herself was unable to tend to this group when she was very ill, and there was grumbling among the members. One member actually got fed up with things and started another liver cirrhosis support group here at Yahoo. I belonged to both for a while until she disappeared from the web like a puff of smoke. My blackberry actually notifies me now in my own voice " some one just posted on the OLD support group " , 24 hours a day. I never changed it. I think about her when ever I get that notification. I am grateful to have been nominated to me a moderator here. This really is the best support group on the web in my opinion. I've tried a bunch. But it isnt the moderators who make it so special, it's the people who are the members! It's YOU, Barby, Jan, Abijann, ,Pamela, Lyncia, Penny, Qoya,Sharon, ( she quit by the way), Tilly, Phyliss, Jill , Maureen, ,MaC, , Gloria,, ,Debra, Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support group. They may have better graphics and features, but we have the PEOPLE. I dont make too many AA meetings these days because of the cigarette smoke and the transportation issues, but I feel like this group is the service that we in AA are encourage to do as a part of a program of sobriety. I know this does keep me very busy. Even if I dont post, I read evey singe one, even when I was in the hospital two summers ago. My black berry is on 24 hours, and often gongs in the middle of the night with Yahoo chat, and I end up having a conversation with someone I dont even know until the sun comes up. It is very very interesting, and also very rewarding. . I am really glad that most of the people here really do get the idea of what is appropriate, and what is not and it makes me sad any time someone quits. I was sad that my friend quit two years ago and started her own group, and then just disappeared. I am just really glad that we have a good mix here, my other support groups were dismal. Everyone decompensated, no humor, mean people, you name it. As MaC always says, it's all about the love. love, Bobby ____________ _________ _________ __ From: dave dodds <daveliltoeyahoo (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Saturday, September 5, 2009 11:51:08 AM Subject: Re: (unknown) Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother. ..she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her...listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings... I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 3:09:30 PM Subject: Re: (unknown) DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! KUDOS! ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 8:01:41 AM Subject: (unknown) Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended....just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2009 Report Share Posted September 6, 2009 Thanks Dave, This group is mostly self moderated and it doesn't take much work to actually moderate. I hope Gloria stays and that she doesn't take this too seriously. I can already see that her presence here has an impact and it would be sad to have her go. MaC Subject: Re: (unknown) To: livercirrhosissupport Date: Saturday, September 5, 2009, 10:51 AM Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother. ..she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her..listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings... I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 3:09:30 PM Subject: Re: (unknown) DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! KUDOS! ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 8:01:41 AM Subject: (unknown) Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended...just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2009 Report Share Posted September 6, 2009 very well said bobby,you are the sweetest!!!! and speaking of AA you have a birthday right around the corner dont you !!! i believe the 15th?! love you bob-o!!!! > > Dave, there is no user agreement to govern this group. The owner has left it up to the three of us to moderate as best we can, and we have very very simple rules which are mostly common sense. Posting links to any products, asking for donations or other requests for money , which has actually happened, flaming each other, which happens about twice a year, and discussing politics and other divisive subjects usually gets a response from a moderator. > > If one member offends another, it is usually brought to the attention of the offender by the offendee, and apologies are exchanged, and that's usually the end of it, no moderator needed. I hope Gloria does not quit. I hope that trying to keep some kind of order here does not discourage people to post, but the reality is that every month there are more and more people who find us on line looking for support and answers. If this someone decides that things have gotten too strict, they might want to check out other support groups, and they might find one more laid back, but I have checked out many, and find almost all of them to be much much more strict. > > My wife joined a support group in 2002 after being diagnosed with Chiari malformation. She actually joined several, and they all helped shape her course of treatment. I toyed with the idea of starting my own group because our owner here , being a sufferer of end stage liver disease herself was unable to tend to this group when she was very ill, and there was grumbling among the members. One member actually got fed up with things and started another liver cirrhosis support group here at Yahoo. > I belonged to both for a while until she disappeared from the web like a puff of smoke. My blackberry actually notifies me now in my own voice " some one just posted on the OLD support group " , 24 hours a day. I never changed it. I think about her when ever I get that notification. I am grateful to have been nominated to me a moderator here. > This really is the best support group on the web in my opinion. I've tried a bunch. But it isnt the moderators who make it so special, it's the people who are the members! It's YOU, Barby, Jan, Abijann, ,Pamela,Lyncia, Penny, Qoya,Sharon, ( she quit by the way), Tilly, > Phyliss, Jill , Maureen, ,MaC,, Gloria,, ,Debra,Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support group. They may have better graphics and features, but we have the PEOPLE. > I dont make too many AA meetings these days because of the cigarette smoke and the transportation issues, but I feel like this group is the service that we in AA are encourage to do as a part of a program of sobriety. I know this does keep me very busy. > > Even if I dont post, I read evey singe one, even when I was in the hospital two summers ago. My black berry is on 24 hours, and often gongs in the middle of the night with Yahoo chat, and I end up having a conversation with someone I dont even know until the sun comes up. It is very very interesting, and also very rewarding. . > > I am really glad that most of the people here really do get the idea of what is appropriate, and what is not and it makes me sad any time someone quits. I was sad that my friend quit two years ago and started her own group, and then just disappeared. I am just really glad that we have a good mix here, my other support groups were dismal. Everyone decompensated, no humor, mean people, you name it. > As MaC always says, it's all about the love. > > love, Bobby > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Saturday, September 5, 2009 11:51:08 AM > Subject: Re: (unknown) > > > Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother. ..she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her..listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings... I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a > constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave > > ____________ _________ _________ __ > From: Phyllis Delgado <pdelgado354@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Friday, September 4, 2009 3:09:30 PM > Subject: Re: (unknown) > > > DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! > KUDOS! > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Friday, September 4, 2009 8:01:41 AM > Subject: (unknown) > > > Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended...just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and > paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2009 Report Share Posted September 6, 2009 You rock,Bobby!! Love,Jill We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. Subject: Re: (unknown) To: livercirrhosissupport Date: Saturday, September 5, 2009, 11:45 PM Dave, there is no user agreement to govern this group. The owner has left it up to the three of us to moderate as best we can, and we have very very simple rules which are mostly common sense. Posting links to any products, asking for donations or other requests for money , which has actually happened, flaming each other, which happens about twice a year, and discussing politics and other divisive subjects usually gets a response from a moderator. If one member offends another, it is usually brought to the attention of the offender by the offendee, and apologies are exchanged, and that's usually the end of it, no moderator needed. I hope Gloria does not quit. I hope that trying to keep some kind of order here does not discourage people to post, but the reality is that every month there are more and more people who find us on line looking for support and answers. If this someone decides that things have gotten too strict, they might want to check out other support groups, and they might find one more laid back, but I have checked out many, and find almost all of them to be much much more strict. My wife joined a support group in 2002 after being diagnosed with Chiari malformation. She actually joined several, and they all helped shape her course of treatment. I toyed with the idea of starting my own group because our owner here , being a sufferer of end stage liver disease herself was unable to tend to this group when she was very ill, and there was grumbling among the members. One member actually got fed up with things and started another liver cirrhosis support group here at Yahoo. I belonged to both for a while until she disappeared from the web like a puff of smoke. My blackberry actually notifies me now in my own voice " some one just posted on the OLD support group " , 24 hours a day. I never changed it. I think about her when ever I get that notification. I am grateful to have been nominated to me a moderator here. This really is the best support group on the web in my opinion. I've tried a bunch. But it isnt the moderators who make it so special, it's the people who are the members! It's YOU, Barby, Jan, Abijann, ,Pamela, Lyncia, Penny, Qoya,Sharon, ( she quit by the way), Tilly, Phyliss, Jill , Maureen, ,MaC, , Gloria,, ,Debra, Debbie,, Crazy Girl, Kim, its all of YOU who make this the best support group. They may have better graphics and features, but we have the PEOPLE. I dont make too many AA meetings these days because of the cigarette smoke and the transportation issues, but I feel like this group is the service that we in AA are encourage to do as a part of a program of sobriety. I know this does keep me very busy. Even if I dont post, I read evey singe one, even when I was in the hospital two summers ago. My black berry is on 24 hours, and often gongs in the middle of the night with Yahoo chat, and I end up having a conversation with someone I dont even know until the sun comes up. It is very very interesting, and also very rewarding. . I am really glad that most of the people here really do get the idea of what is appropriate, and what is not and it makes me sad any time someone quits. I was sad that my friend quit two years ago and started her own group, and then just disappeared. I am just really glad that we have a good mix here, my other support groups were dismal. Everyone decompensated, no humor, mean people, you name it. As MaC always says, it's all about the love. love, Bobby ____________ _________ _________ __ From: dave dodds <daveliltoeyahoo (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Saturday, September 5, 2009 11:51:08 AM Subject: Re: (unknown) Phyllis...thank you very much for the reply..I'm not trained in any type of public speaking, other than the norm, and my primary caregiver, my Great Grandmother. ..she was almost full Osage Indian, and her last name was Speaker..I love(d) here as much as she does (did) me..she was supreme at unconditional love..something I did not find again until I was 28 and had my own baby..I have always taken great pride and love from my relationship with her..listening to her stories, indeed just watching her..a small woman with floor length raven hair...enough of my ramblings; mainly wanted to tell Mac how difficult being monitor of a group must be..I do not envy your task..I would not be able to control my ramblings... I'm not trying to suck up to you, because you are a monitor...for one I'm not sure you are one...my days of sucking up are over...I am at the 'take me as I am, or stay the **** away stage'...Just hated to see Gloria leave, as she was a constant and dependable member. Her responses were almost on as a daily voice..I do not even know what your terms and conditions are anyhow..I figure when I step over the line I will hear about it..good luck to you, Gloria, Phyllis, etc. peace out, Dave ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 3:09:30 PM Subject: Re: (unknown) DAVE, ARE YOU IN PUBLIC RELATIONS? YOU'RE DAMN GOOD! KUDOS! ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Friday, September 4, 2009 8:01:41 AM Subject: (unknown) Gloria, I was not personally offended about your remark, and realize that is a common term used in many countries attributed to immigrants that arrive in our countries, and many others, by any means possible.... In their case often unsafe, overloaded boats...I do understand how some may be offended...just so happens most early immigrants arrived in just such a way...apparently some are offended by the term, as is their right...I have found your entries here to be very compassionate and caring...is the topic of immigrants related to health care? Very much so...so it must be the term found non-appropriate, and hopefully not the effect that immigration has on the health system..my reason for joining this group is to find a release, a better understanding, etc. from those suffering with liver disease...much of the release for me involves writing what is happening with myself, listening to others telling their own circumstance, and very importantly and paramount, comradery ...as one who is often offended easily, and often wrong in perceived hurts, I must be vigilant in watching for justified and unjustified wrongs...if I do that, 90 plus % are unjustified. ..peace Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2009 Report Share Posted September 7, 2009 You are absolutely right. In fact, the scientists I read on the subject say that exact thing. We are like the Mayfly. Here for such a short time. Love, Bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Monday, September 7, 2009 6:53:42 AM Subject: Re: Re: (unknown) Hey Bobby, There is one thing I found about life. It's like the wind. If you're not careful, it will blow right by. The one thing I'm glad for and most proud for is that this anniversary blows right by as if it is just one more day. One day at a time my friend! I am so proud of you, words can't express. But!, The sunspot thing is a cycle thing which occurs within the life of the sun. We've only been studying the Sun for roughly 50 years (with good technology) and its about a 100 million years old (or more)or so... I wouldn't jump to any conclusions about what its affect on us is just yet. In my opinion, I haven't seen a change at all in the weather. Summer is hot, Winter is cold. Hasn't it always been that way? :-) Take care, Love & Peace, MaC MaC --- On Mon, 9/7/09, Bob Aragon Thanks, Jan. This sure has been the wierdest of years. The sunspots are gone and there is talk at NASA that they might never come back. It is having a huge effect on the weather. They are calling this the year without summer. It rained for two months solid in June and July, and has dried out a bit this month, but we never did have real Denver summer heat. Just 'fall' like weather all summer. The tourist season was ruined in New England, or so I have read on the news wires. I gained 10 lbs and am so hopping mad. There was a problem in July with the morphine not working, and now it is working again, so I can move about more, but when it doesnt work, I have to stay ever so still or I get to thinking of suicide because the liver ache drowns every thing else out. Of course I could never ever do it, because of my renewed faith, Sharon, and this group. my pain starts me to break out in a sweat, and cause me to snap at every one. How bad has your pain been, Jan? Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 I try very hard to keep my sodium below 2000...I initially set my intake at 1000, thinking that way I'd be able to keep it under 2000...as we all know it is near impossible to stay away from sodium...I was amazed how much we take in once I started watching my diet...It is very hard, and I'm sure I do go over the 2000 max... Dave ________________________________ To: livercirrhosissupport Sent: Wednesday, September 9, 2009 5:35:33 PM Subject: (unknown) are you being strict with your sodium intake? > > I have a question ..I have had ascites for 3 yrs. now and take furosemide and amiloride for it...my fluid retention has always been ascites, but the last 5 days or so I have had the normal swelling in my stomach, but am now having a great deal of swelling in my feet and ankles..have any of you all had this progression? Previously I have had very little edema, or none at all...guess I should see my doc. Was just wondering if any of you all had this apparent progression? Thanks, Dave > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Dave, I am so sorry. Dealing with this disease wears so quickly on your nerves and makes you so sad, so often. Please know I am praying for you. Do make that call to your doctor tomorrow morning, especially since this is your first experience with the swelling in your extremities. Terry, my late husband, used to swell so badly in his feet that he couldn't walk because his feet would actually be rounded on the bottom and wouldn't flaten out, even when he was fully weight-bearing. I cannot say I know what you are going through from my personal experience, but I do know from having been with Terry as he went through it. It is agonizing for you and for those who love you. Again, I am so sorry that this has infringed upon your weekend with your daughter and grandson. Please update us after you speak with your doctor. My prayers are with you. Warm Hugs........... Di http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Sunday, September 13, 2009 11:59:08 AM Subject: (unknown) I'm sorry I only seem to come here when things are bad, but seems they are mostly that way now...what has always been a great weekend when my daughter and grandson come up was full of agony for most of my visit...my legs, feet, and ankles swelled up so bad I could hardly walk, and my feet hurt very bad...finally this noon the swelling has mostly gone down..but I wonder for how long? I should call my doc tomorrow, but I get weary of doc's...this is a first in my journey of my feet and ankles swelling like this...I thought the ascites was bad, but that is more horrific..walking is terrible and just laying with my feet up to try and make the pain go away...and knowing things will, only progress into being worse... Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Hety,Dave...I'm sorry to hear you're suffering so much. Cirrohsis really stinks! I hope your doctor can give yu some relief tomorrow. Love,Jill We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. Subject: Re: (unknown) To: livercirrhosissupport Date: Sunday, September 13, 2009, 5:42 PM Dave, I am so sorry. Dealing with this disease wears so quickly on your nerves and makes you so sad, so often. Please know I am praying for you. Do make that call to your doctor tomorrow morning, especially since this is your first experience with the swelling in your extremities. Terry, my late husband, used to swell so badly in his feet that he couldn't walk because his feet would actually be rounded on the bottom and wouldn't flaten out, even when he was fully weight-bearing. I cannot say I know what you are going through from my personal experience, but I do know from having been with Terry as he went through it. It is agonizing for you and for those who love you. Again, I am so sorry that this has infringed upon your weekend with your daughter and grandson. Please update us after you speak with your doctor. My prayers are with you. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoeyahoo (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 11:59:08 AM Subject: (unknown) I'm sorry I only seem to come here when things are bad, but seems they are mostly that way now...what has always been a great weekend when my daughter and grandson come up was full of agony for most of my visit...my legs, feet, and ankles swelled up so bad I could hardly walk, and my feet hurt very bad...finally this noon the swelling has mostly gone down..but I wonder for how long? I should call my doc tomorrow, but I get weary of doc's...this is a first in my journey of my feet and ankles swelling like this...I thought the ascites was bad, but that is more horrific..walking is terrible and just laying with my feet up to try and make the pain go away...and knowing things will, only progress into being worse... Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Thank you Jill; thank you for understanding. So many 'friends' have been so eager to 'set me up' so I can 'go on with my life'. I recently told my sisters if one more well-meaning 'friend' offered to 'set me up' with someone, I was going to just have a hissy fit! Shoot, the LAST thing on my mind at ths juncture is another man or another relationship! Warm Hugs........... Di http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 6:03:44 PM Subject: Re: (unknown) One step at a time, dear Diane. Only you can know when that time is right, if ever. Love,Jill We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. From: dave dodds <daveliltoe@ yahoo. com> Subject: Re: (unknown) To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, September 13, 2009, 7:57 PM Diane, thanks for the moral support, and for praying for me. I guess you could say, Lord knows I need it. What you were saying about my grandson is very true. His Grandmother, my X, is very sick also. He could easily lose out on knowing either of us well. He just turned two. My circumstances are so much better than some that it annoys me I get on so much self-pity. I could, when time comes, look into hospice. I think hospice is for the last 6 months. I may be wrong, though. I don't know how far away I am from needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 yrs. ago. My liver doc would not give me a length, saying he does nor forecast the future. I appreciated him for that answer, and the others for their honesty. As they say be careful what you ask. I kind of wish now, when I asked, the other's would not have told me. I am sure they were going by percentage's giving my symptoms. If they were correct I am about 16 months away. As I have often thought, since their prediction, very few really know how long they have or how they will go. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 6:23:35 PM Subject: Re: (unknown) Dave, you have in no way offended me. To say that have faith, without question, is certainly far from reality. I have come to a place in my life where I rarely allow myself to question God; that has not always been so... I struggled with my faith for many, many years through some terribly difficult circumstances. I hope I won't offend you by saying I will pray for you and ask you not to give up on God. He hasn't given up on you. That being said, I do honestly care about you and about what you are going through. Cirrhosis is hard, just plain HARD. Every day is a journey into the unknown and leads us down paths we never dreamed we would have to walk. Uncertainly and depression are familiar friends. I do so hope your doctor can help you with the edema. BTW, I just wanted to add that you should give serious consideration to that transplant. Whether you do it or not, give it every chance when deciding. You have a beautiful grandson who would so desperately miss his Grandpa, and I'd be willing to bet your daughter would sure miss you too! Sometimes, bad things happen to good people so they can reacess their lives and make fresh starts. I'm praying for you Dave! Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 6:13:15 PM Subject: Re: (unknown) Diane, this is one of my biggest problems. I do not have a strong belief in the here after, religion, etc. I do not want to offend those that do. I wish I did, but I don't. I see how much it helps people, but I have not been able to grasp the concept. I come from a family that both parents were strong believers and they took me to church regularly. I don't know why I have had such a hard time with faith. I am not of the belief that the world happened in a vacuum. There is a degree of spirituality in me. I'm sure you don't want me to go into the usual talk of why bad things happen to good people and good things happen to bad people... I just am unable to square the suffering people endure with the idea of God having his hand on the throttle, so to speak. I hope I have not offended you or anyone. I admire your ability to believe without question. I know there is a force of good in the universe, and certainly a evil in the universe. I know it would help me if I had your faith, but it avoids me or I avoid it. Whichever way it is, the outcome for me is the same, lack of faith for which I, in the end, pay the price. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 5:28:49 PM Subject: Re: (unknown) Hi Dave, No, Terry opted not to try for a transplant. He had been at death's door a couple of times prior to even knowing about his liver disease. He felt much more peaceful about death than dealing with life after a transplant. Also, he had a genetic disorder that predisposed him to liver disease. He thought it would be selfish of him to ask for a donor liver, knowing his body would begin attacking it as soon as it was transplanted, when so few are available. It was so hard to sit by and watch him make that decision, but I had watched Momma die of renal failure and had seen all she had gone through with the dialysis and didn't want to emotionally force anything on Terry that he wasn't ready to deal with. I told him I would support him fully in whatever decision he made; if he chose to go for the transplant, I would be there every step of the way but if not, I would also help him live his life to the fullest until the time came for him to go home with the Lord. As hard as it was to give him up, I did so knowing I had done for him what his heart desired and loved him completely until Jesus came for him. Now that I have cirrhosis as well, I am much in the same boat as you. Terry and I had three children who never made it to this world. I have two sisters and a niece and four nephews who love me dearly. However, I am not comfortable asking them to take on the role of my caregiver as this disease progresses. I know how hard that is on the loved one and I don't want them to have to go through that. I have already started checking in to in-patient hospice care for when that time comes. Whether I will consider a transplant or not is something I haven't really even thought about yet. I pray about it and just ask the Lord to help me make the right decision when the time comes. Whatever decision you make, please know that I am praying for you. I do not look forward to dealing with this disease, but I also don't allow myself to worry about it. I simply leave it with the Lord and know He already has a plan and all I have to do is submit myself to His will and plan for my life. My faith carries me through this, just as it has through so many other areas of my life. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 5:05:45 PM Subject: Re: (unknown) Thanks for writing back Diane..And I am sorry you had to go through this with your husband...I know from dealing with close friends and family how difficult a progressive fatal disease is on the caregiver and others close..if I may ask, did your husband have a transplant? I am wrestling with that decision when it comes, and whether to put myself and family through that. I don't really have someone I can move in with during the recovery process, and would not put that burden on my daughter and her significant other. For one there is not room in her house, except a finished basement, and I don't see how someone could negotiate the stairs in that condition. For another reason her relationship is fragile I believe, and that would certainly not help, and though we are civil, we really don't care a lot for each other. I know some go into medical centers to recuperate and I'm fine with that option, since likely the progression either way will put me into one, but I still have a lot of soul searching to do about a transplant. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 4:42:49 PM Subject: Re: (unknown) Dave, I am so sorry. Dealing with this disease wears so quickly on your nerves and makes you so sad, so often. Please know I am praying for you. Do make that call to your doctor tomorrow morning, especially since this is your first experience with the swelling in your extremities. Terry, my late husband, used to swell so badly in his feet that he couldn't walk because his feet would actually be rounded on the bottom and wouldn't flaten out, even when he was fully weight-bearing. I cannot say I know what you are going through from my personal experience, but I do know from having been with Terry as he went through it. It is agonizing for you and for those who love you. Again, I am so sorry that this has infringed upon your weekend with your daughter and grandson. Please update us after you speak with your doctor. My prayers are with you. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 11:59:08 AM Subject: (unknown) I'm sorry I only seem to come here when things are bad, but seems they are mostly that way now...what has always been a great weekend when my daughter and grandson come up was full of agony for most of my visit...my legs, feet, and ankles swelled up so bad I could hardly walk, and my feet hurt very bad...finally this noon the swelling has mostly gone down..but I wonder for how long? I should call my doc tomorrow, but I get weary of doc's...this is a first in my journey of my feet and ankles swelling like this...I thought the ascites was bad, but that is more horrific..walking is terrible and just laying with my feet up to try and make the pain go away...and knowing things will, only progress into being worse... Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 thx-I was just feeling sorry for myself- we do have a good time together, even with the things that are ahppening. I did get a call back from the Dr office, they instructed us to go for labwrk. I rec'd a call abck aft they rec'd resilts and he feels that increasing lactulose to 2-3 times a day will help eliminate most of the problems he is having in a few days.. Continue with the infusions.uggggggggggggh! didn't want to hear that! I told him thta they will hear from me agin on Thursday if nothing has changed! Oh, and by the way, he is my husband, not my Dad, tho sometimes he acts like a Dad.haha ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 2:22:11 PM Subject: Re: (unknown) Phyllis - I understand, you are having a hard time. It never stops. You do start wondering what next. When I left the nursing home they sent me to after my CABG a year ago last April, I jokingly said " I wonder what is going to happen next year. Some people got mad at me for saying it as if I could actually cause something to happen by joking about it. I don't even count the for me routine angioplasty and stent procedures. But it seems that every winter/spring, some major medical problem happened. The year before it had been pancreatitis ending in gall bladder surgery. This year at least I didn't have to go into the hospital, except for two angioplasties. But I did find out that my kidneys were in trouble. From what you said, for you it is a daily problem. I couldn't do what you caretakers do, I admire you all immensely. Every time something happens, I am sure it is a disappointment. But, can you get to a point where you no longer expect things to be good, no problems for a day. For me, it isn't such a shock or disappointmnet when something new happens because I don't expect for my body to miraculously heal itself. Although, there are a lot of people who are praying for that very thing for me. I hope you have some help with your dad, and that you can get out and do something other taking care of him. And if you do, don't feel guilty for having fun when he is so ill. And, I hope you will be able to find some times when you can have a good time with your dad, regardless of how short it may be. Those are the times to hold on to. Jan H On Mon, Sep 14, 2009 at 2:52 PM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote: > Thx Jan > I try to not let it occupy our lives but it is there, every day, reminding > us of our limitations. > My husband is currently on a 12 hr home infusion of deferoxamine( remove > excess iron) which I have to administer every other day. This is his sixth > treatment and every day we encounter new issues, an infection on one of the > injection sites. confusion, vision problems,vomiting, sleeps constanly, > can't eat (tho his stomach is growling) etc, etc....One day he took > medication and didn't know what he took, he came into the room with white > powder residue on his mouth, I had to induce vomiting. I am awaiting a call > back from Dr's office,we are not going to continue on ths course of > treatment, he is worst instead of better. When he doesn't take the > treatment he is back to normal eating, coherent, playing with dog, normal BP > etc.. > He flooded bathroom yesterday, as he didn't know how to turn off faucet. > Trying times, the mind is scrambled, unable to turn off this madness. > Phyllis > > > ____________ _________ _________ __ > > From: Jan Holman <janholmangmail (DOT) com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, September 14, 2009 11:40:31 AM > Subject: Re: (unknown) > > Phylllis - I know you asked the question of Diane, but I feel much the same > way. Of course, I never forget that I have it, but it isn't the topmost > thing on my mind. Some of the side effects are on my mind every day, the > lack of energy, having to ration it to do what I want to do including > reading all these emails and the emails from other sources. But, I think > it is the acceptance of my medical problems, finding new ways of doing > things that don't require so much energy, spacing activities, staying as > active as possible. And my faith makes it so much easier to not become > cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid > disease, I haven't even bothered to find out what effects hasimotos disease > has on me. I am not my medical problems. I am a child of God with a job to > do here on earth. The most troublesome problem on a daily basis, and > comparitively rather minor, is osteo arthritis. It keeps reminding you with > pain. But when you know God is with you, that is so much more important > than how you might leave this world, or what will happen to you while you > are here. Now when I had an abcessed tooth that really flared up after my > last angioplasty, hurt from the top of my head down the side of my neck, > that was hard to keep out of my mind,[?] but I still continued to do as > much > as possible. Jan H > > On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com > >wrote: > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to > > accomplish that? > > > > > > > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 10:10:30 PM > > Subject: Re: (unknown) > > > > > > Yes, Dave, Hospice care is for the end-of-life and is something you > > shouldn't consider until you have made your decision regarding > > transplant. Give it much thought and consideration, both for yourself and > > your grandson. > > > > None of us knows the number of our days. We walk about every day living > > like we think we will live forever; but the truth is that any of us could > go > > within the next minute. I don't allow the thought that I have cirrhosis > to > > occupy too much of my time. I live my life and try my best to take care > of > > myself. When my time comes, it comes; end of story. I'm not a fatalist, > > just a realist. > > > > I am always here if you need a friend or an ear to listen. I can't hide > my > > faith, but I won't shove it down your throat either. Good luck with the > > call to your doctor tomorrow! > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:57:15 PM > > Subject: Re: (unknown) > > > > > > Diane, thanks for the moral support, and for praying for me. I guess you > > could say, Lord knows I need it. What you were saying about my grandson > is > > very true. His Grandmother, my X, is very sick also. He could easily lose > > out on knowing either of us well. He just turned two. My circumstances > are > > so much better than some that it annoys me I get on so much self-pity. I > > could, when time comes, look into hospice. I think hospice is for the > last > > 6 months. I may be wrong, though. I don't know how far away I am from > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than > 4 > > yrs. ago. My liver doc would not give me a length, saying he does nor > > forecast the future. I appreciated him for that answer, and the others > for > > their honesty. As they say be careful what you ask. I kind of wish now, > > when I asked, the other's would not have told me. I am sure they were > going > > by percentage's giving my symptoms. If they > > were correct I am about 16 months away. As I have often thought, since > > their prediction, very few really know how long they have or how they > will > > go. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:23:35 PM > > Subject: Re: (unknown) > > > > > > Dave, you have in no way offended me. To say that have faith, without > > question, is certainly far from reality. I have come to a place in my > life > > where I rarely allow myself to question God; that has not always been so. > I > > struggled with my faith for many, many years through some terribly > difficult > > circumstances. I hope I won't offend you by saying I will pray for you > and > > ask you not to give up on God. He hasn't given up on you. > > > > That being said, I do honestly care about you and about what you are > going > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > > the unknown and leads us down paths we never dreamed we would have to > walk. > > Uncertainly and depression are familiar friends. I do so hope your doctor > > can help you with the edema. BTW, I just wanted to add that you should > give > > serious consideration to that transplant. Whether you do it or not, give > it > > every chance when deciding. You have a beautiful grandson who would so > > desperately miss his Grandpa, and I'd be willing to bet your daughter > would > > sure miss you too! Sometimes, bad things happen to good people so they > can > > reacess their lives and make fresh starts. > > > > I'm praying for you Dave! > > > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:13:15 PM > > Subject: Re: (unknown) > > > > > > Diane, this is one of my biggest problems. I do not have a strong belief > > in the here after, religion, etc. I do not want to offend those that do. > I > > wish I did, but I don't. I see how much it helps people, but I have not > > been able to grasp the concept. I come from a family that both parents > were > > strong believers and they took me to church regularly. I don't know why I > > have had such a hard time with faith. I am not of the belief that the > world > > happened in a vacuum. There is a degree of spirituality in me. I'm sure > > you don't want me to go into the usual talk of why bad things happen to > good > > people and good things happen to bad people. I just am unable to square > the > > suffering people endure with the idea of God having his hand on the > > throttle, so to speak. I hope I have not offended you or anyone. I admire > > your ability to believe without question. I know there is a force of good > > in the universe, and certainly a evil in the > > universe. I know it would help me if I had your faith, but it avoids me > or > > I avoid it. Whichever way it is, the outcome for me is the same, lack of > > faith for which I, in the end, pay the price. > > Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:28:49 PM > > Subject: Re: (unknown) > > > > > > Hi Dave, > > > > No, Terry opted not to try for a transplant. He had been at death's door > a > > couple of times prior to even knowing about his liver disease. He felt > much > > more peaceful about death than dealing with life after a transplant. > Also, > > he had a genetic disorder that predisposed him to liver disease. He > thought > > it would be selfish of him to ask for a donor liver, knowing his body > would > > begin attacking it as soon as it was transplanted, when so few are > > available. It was so hard to sit by and watch him make that decision, but > I > > had watched Momma die of renal failure and had seen all she had gone > through > > with the dialysis and didn't want to emotionally force anything on Terry > > that he wasn't ready to deal with. I told him I would support him fully > in > > whatever decision he made; if he chose to go for the transplant, I would > be > > there every step of the way but if not, I would also help him live his > life > > to the fullest until the time came for him to go home > > with the Lord. As hard as it was to give him up, I did so knowing I had > > done for him what his heart desired and loved him completely until Jesus > > came for him. > > > > Now that I have cirrhosis as well, I am much in the same boat as > > you. Terry and I had three children who never made it to this world. I > > have two sisters and a niece and four nephews who love me dearly. > However, > > I am not comfortable asking them to take on the role of my caregiver as > this > > disease progresses. I know how hard that is on the loved one and I don't > > want them to have to go through that. I have already started checking in > to > > in-patient hospice care for when that time comes. Whether I will consider > a > > transplant or not is something I haven't really even thought about yet. I > > pray about it and just ask the Lord to help me make the right decision > when > > the time comes. > > > > Whatever decision you make, please know that I am praying for you. I do > > not look forward to dealing with this disease, but I also don't allow > myself > > to worry about it. I simply leave it with the Lord and know He already > has > > a plan and all I have to do is submit myself to His will and plan for my > > life. My faith carries me through this, just as it has through so many > > other areas of my life. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:05:45 PM > > Subject: Re: (unknown) > > > > > > Thanks for writing back Diane..And I am sorry you had to go through this > > with your husband...I know from dealing with close friends and family how > > difficult a progressive fatal disease is on the caregiver and others > > close..if I may ask, did your husband have a transplant? I am wrestling > > with that decision when it comes, and whether to put myself and family > > through that. I don't really have someone I can move in with during the > > recovery process, and would not put that burden on my daughter and her > > significant other. For one there is not room in her house, except a > > finished basement, and I don't see how someone could negotiate the stairs > in > > that condition. For another reason her relationship is fragile I believe, > > and that would certainly not help, and though we are civil, we really > don't > > care a lot for each other. I know some go into medical centers to > > recuperate and I'm fine with that option, since likely the progression > > either way will put > > me into one, but I still have a lot of soul searching to do about a > > transplant. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 4:42:49 PM > > Subject: Re: (unknown) > > > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > > nerves and makes you so sad, so often. Please know I am praying for you. > > Do make that call to your doctor tomorrow morning, especially since this > is > > your first experience with the swelling in your extremities. Terry, my > late > > husband, used to swell so badly in his feet that he couldn't walk because > > his feet would actually be rounded on the bottom and wouldn't flaten out, > > even when he was fully weight-bearing. I cannot say I know what you are > > going through from my personal experience, but I do know from having been > > with Terry as he went through it. It is agonizing for you and for those > who > > love you. Again, I am so sorry that this has infringed upon your weekend > > with your daughter and grandson. Please update us after you speak with > your > > doctor. My prayers are with you. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 11:59:08 AM > > Subject: (unknown) > > > > > > I'm sorry I only seem to come here when things are bad, but seems they > are > > mostly that way now...what has always been a great weekend when my > daughter > > and grandson come up was full of agony for most of my visit...my legs, > feet, > > and ankles swelled up so bad I could hardly walk, and my feet hurt very > > bad...finally this noon the swelling has mostly gone down..but I wonder > for > > how long? I should call my doc tomorrow, but I get weary of doc's...this > is > > a first in my journey of my feet and ankles swelling like this...I > thought > > the ascites was bad, but that is more horrific..walking is terrible and > just > > laying with my feet up to try and make the pain go away...and knowing > things > > will, only progress into being worse... > > Dave > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Phil & I thank you. Yes, one day at a time. ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 2:35:19 PM Subject: Re: (unknown) Terry never had to deal with excess iron, so never dealt with these treatments. I know this does put an entirely new face on dealing with the disease. The other things you mentioned, we did deal with on a progressively worse basis as time went by. We just dealt with whatever was happening at the moment and then moved on until the next hurdle presented itself. I am praying for you and Ed. I know it is hard and the days and nights are long. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 4:52:38 PM Subject: Re: (unknown) Thx Jan I try to not let it occupy our lives but it is there, every day, reminding us of our limitations. My husband is currently on a 12 hr home infusion of deferoxamine( remove excess iron) which I have to administer every other day. This is his sixth treatment and every day we encounter new issues, an infection on one of the injection sites. confusion, vision problems,vomiting, sleeps constanly, can't eat (tho his stomach is growling) etc, etc....One day he took medication and didn't know what he took, he came into the room with white powder residue on his mouth, I had to induce vomiting. I am awaiting a call back from Dr's office,we are not going to continue on ths course of treatment, he is worst instead of better. When he doesn't take the treatment he is back to normal eating, coherent, playing with dog, normal BP etc.. He flooded bathroom yesterday, as he didn't know how to turn off faucet. Trying times, the mind is scrambled, unable to turn off this madness. Phyllis ____________ _________ _________ __ From: Jan Holman <janholmangmail (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 11:40:31 AM Subject: Re: (unknown) Phylllis - I know you asked the question of Diane, but I feel much the same way. Of course, I never forget that I have it, but it isn't the topmost thing on my mind. Some of the side effects are on my mind every day, the lack of energy, having to ration it to do what I want to do including reading all these emails and the emails from other sources. But, I think it is the acceptance of my medical problems, finding new ways of doing things that don't require so much energy, spacing activities, staying as active as possible. And my faith makes it so much easier to not become cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid disease, I haven't even bothered to find out what effects hasimotos disease has on me. I am not my medical problems. I am a child of God with a job to do here on earth. The most troublesome problem on a daily basis, and comparitively rather minor, is osteo arthritis. It keeps reminding you with pain. But when you know God is with you, that is so much more important than how you might leave this world, or what will happen to you while you are here. Now when I had an abcessed tooth that really flared up after my last angioplasty, hurt from the top of my head down the side of my neck, that was hard to keep out of my mind,[?] but I still continued to do as much as possible. Jan H On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote: > wow, you don't let cirrhosis occupy your mind much? Tell me how to > accomplish that? > > > > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 10:10:30 PM > Subject: Re: (unknown) > > > Yes, Dave, Hospice care is for the end-of-life and is something you > shouldn't consider until you have made your decision regarding > transplant. Give it much thought and consideration, both for yourself and > your grandson. > > None of us knows the number of our days. We walk about every day living > like we think we will live forever; but the truth is that any of us could go > within the next minute. I don't allow the thought that I have cirrhosis to > occupy too much of my time. I live my life and try my best to take care of > myself. When my time comes, it comes; end of story. I'm not a fatalist, > just a realist. > > I am always here if you need a friend or an ear to listen. I can't hide my > faith, but I won't shove it down your throat either. Good luck with the > call to your doctor tomorrow! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:57:15 PM > Subject: Re: (unknown) > > > Diane, thanks for the moral support, and for praying for me. I guess you > could say, Lord knows I need it. What you were saying about my grandson is > very true. His Grandmother, my X, is very sick also. He could easily lose > out on knowing either of us well. He just turned two. My circumstances are > so much better than some that it annoys me I get on so much self-pity. I > could, when time comes, look into hospice. I think hospice is for the last > 6 months. I may be wrong, though. I don't know how far away I am from > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 > yrs. ago. My liver doc would not give me a length, saying he does nor > forecast the future. I appreciated him for that answer, and the others for > their honesty. As they say be careful what you ask. I kind of wish now, > when I asked, the other's would not have told me. I am sure they were going > by percentage's giving my symptoms. If they > were correct I am about 16 months away. As I have often thought, since > their prediction, very few really know how long they have or how they will > go. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:23:35 PM > Subject: Re: (unknown) > > > Dave, you have in no way offended me. To say that have faith, without > question, is certainly far from reality. I have come to a place in my life > where I rarely allow myself to question God; that has not always been so. I > struggled with my faith for many, many years through some terribly difficult > circumstances. I hope I won't offend you by saying I will pray for you and > ask you not to give up on God. He hasn't given up on you. > > That being said, I do honestly care about you and about what you are going > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > the unknown and leads us down paths we never dreamed we would have to walk. > Uncertainly and depression are familiar friends. I do so hope your doctor > can help you with the edema. BTW, I just wanted to add that you should give > serious consideration to that transplant. Whether you do it or not, give it > every chance when deciding. You have a beautiful grandson who would so > desperately miss his Grandpa, and I'd be willing to bet your daughter would > sure miss you too! Sometimes, bad things happen to good people so they can > reacess their lives and make fresh starts. > > I'm praying for you Dave! > > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:13:15 PM > Subject: Re: (unknown) > > > Diane, this is one of my biggest problems. I do not have a strong belief > in the here after, religion, etc. I do not want to offend those that do. I > wish I did, but I don't. I see how much it helps people, but I have not > been able to grasp the concept. I come from a family that both parents were > strong believers and they took me to church regularly. I don't know why I > have had such a hard time with faith. I am not of the belief that the world > happened in a vacuum. There is a degree of spirituality in me. I'm sure > you don't want me to go into the usual talk of why bad things happen to good > people and good things happen to bad people. I just am unable to square the > suffering people endure with the idea of God having his hand on the > throttle, so to speak. I hope I have not offended you or anyone. I admire > your ability to believe without question. I know there is a force of good > in the universe, and certainly a evil in the > universe. I know it would help me if I had your faith, but it avoids me or > I avoid it. Whichever way it is, the outcome for me is the same, lack of > faith for which I, in the end, pay the price. > Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:28:49 PM > Subject: Re: (unknown) > > > Hi Dave, > > No, Terry opted not to try for a transplant. He had been at death's door a > couple of times prior to even knowing about his liver disease. He felt much > more peaceful about death than dealing with life after a transplant. Also, > he had a genetic disorder that predisposed him to liver disease. He thought > it would be selfish of him to ask for a donor liver, knowing his body would > begin attacking it as soon as it was transplanted, when so few are > available. It was so hard to sit by and watch him make that decision, but I > had watched Momma die of renal failure and had seen all she had gone through > with the dialysis and didn't want to emotionally force anything on Terry > that he wasn't ready to deal with. I told him I would support him fully in > whatever decision he made; if he chose to go for the transplant, I would be > there every step of the way but if not, I would also help him live his life > to the fullest until the time came for him to go home > with the Lord. As hard as it was to give him up, I did so knowing I had > done for him what his heart desired and loved him completely until Jesus > came for him. > > Now that I have cirrhosis as well, I am much in the same boat as > you. Terry and I had three children who never made it to this world. I > have two sisters and a niece and four nephews who love me dearly. However, > I am not comfortable asking them to take on the role of my caregiver as this > disease progresses. I know how hard that is on the loved one and I don't > want them to have to go through that. I have already started checking in to > in-patient hospice care for when that time comes. Whether I will consider a > transplant or not is something I haven't really even thought about yet. I > pray about it and just ask the Lord to help me make the right decision when > the time comes. > > Whatever decision you make, please know that I am praying for you. I do > not look forward to dealing with this disease, but I also don't allow myself > to worry about it. I simply leave it with the Lord and know He already has > a plan and all I have to do is submit myself to His will and plan for my > life. My faith carries me through this, just as it has through so many > other areas of my life. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:05:45 PM > Subject: Re: (unknown) > > > Thanks for writing back Diane..And I am sorry you had to go through this > with your husband...I know from dealing with close friends and family how > difficult a progressive fatal disease is on the caregiver and others > close..if I may ask, did your husband have a transplant? I am wrestling > with that decision when it comes, and whether to put myself and family > through that. I don't really have someone I can move in with during the > recovery process, and would not put that burden on my daughter and her > significant other. For one there is not room in her house, except a > finished basement, and I don't see how someone could negotiate the stairs in > that condition. For another reason her relationship is fragile I believe, > and that would certainly not help, and though we are civil, we really don't > care a lot for each other. I know some go into medical centers to > recuperate and I'm fine with that option, since likely the progression > either way will put > me into one, but I still have a lot of soul searching to do about a > transplant. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 4:42:49 PM > Subject: Re: (unknown) > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > nerves and makes you so sad, so often. Please know I am praying for you. > Do make that call to your doctor tomorrow morning, especially since this is > your first experience with the swelling in your extremities. Terry, my late > husband, used to swell so badly in his feet that he couldn't walk because > his feet would actually be rounded on the bottom and wouldn't flaten out, > even when he was fully weight-bearing. I cannot say I know what you are > going through from my personal experience, but I do know from having been > with Terry as he went through it. It is agonizing for you and for those who > love you. Again, I am so sorry that this has infringed upon your weekend > with your daughter and grandson. Please update us after you speak with your > doctor. My prayers are with you. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 11:59:08 AM > Subject: (unknown) > > > I'm sorry I only seem to come here when things are bad, but seems they are > mostly that way now...what has always been a great weekend when my daughter > and grandson come up was full of agony for most of my visit...my legs, feet, > and ankles swelled up so bad I could hardly walk, and my feet hurt very > bad...finally this noon the swelling has mostly gone down..but I wonder for > how long? I should call my doc tomorrow, but I get weary of doc's...this is > a first in my journey of my feet and ankles swelling like this...I thought > the ascites was bad, but that is more horrific..walking is terrible and just > laying with my feet up to try and make the pain go away...and knowing things > will, only progress into being worse... > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Phyllis, I am praying the increased lactulose will help clear things up a bit. And, as for the feeling sorry for youself, it's okay. Caregiving is HARD WORK and it takes a lot out of you. Having a little pity party now and again is good for the soul! I know you don't live there and are working very hard to deal with a monster in your lives. Good for you for hanging tough with those doctors; they need it sometimes!!! Oh, and btw, husbands OFTEN act like Daddies, in my experience!!!! I'm praying for you guys!!! Warm Hugs........... Di http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 7:00:06 PM Subject: Re: (unknown) thx-I was just feeling sorry for myself- we do have a good time together, even with the things that are ahppening. I did get a call back from the Dr office, they instructed us to go for labwrk. I rec'd a call abck aft they rec'd resilts and he feels that increasing lactulose to 2-3 times a day will help eliminate most of the problems he is having in a few days.. Continue with the infusions.ugggggggg ggggh! didn't want to hear that! I told him thta they will hear from me agin on Thursday if nothing has changed! Oh, and by the way, he is my husband, not my Dad, tho sometimes he acts like a Dad.haha ____________ _________ _________ __ From: Jan Holman <janholmangmail (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 2:22:11 PM Subject: Re: (unknown) Phyllis - I understand, you are having a hard time. It never stops. You do start wondering what next. When I left the nursing home they sent me to after my CABG a year ago last April, I jokingly said " I wonder what is going to happen next year. Some people got mad at me for saying it as if I could actually cause something to happen by joking about it. I don't even count the for me routine angioplasty and stent procedures. But it seems that every winter/spring, some major medical problem happened. The year before it had been pancreatitis ending in gall bladder surgery. This year at least I didn't have to go into the hospital, except for two angioplasties. But I did find out that my kidneys were in trouble. From what you said, for you it is a daily problem. I couldn't do what you caretakers do, I admire you all immensely. Every time something happens, I am sure it is a disappointment. But, can you get to a point where you no longer expect things to be good, no problems for a day. For me, it isn't such a shock or disappointmnet when something new happens because I don't expect for my body to miraculously heal itself. Although, there are a lot of people who are praying for that very thing for me. I hope you have some help with your dad, and that you can get out and do something other taking care of him. And if you do, don't feel guilty for having fun when he is so ill. And, I hope you will be able to find some times when you can have a good time with your dad, regardless of how short it may be. Those are the times to hold on to. Jan H On Mon, Sep 14, 2009 at 2:52 PM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote: > Thx Jan > I try to not let it occupy our lives but it is there, every day, reminding > us of our limitations. > My husband is currently on a 12 hr home infusion of deferoxamine( remove > excess iron) which I have to administer every other day. This is his sixth > treatment and every day we encounter new issues, an infection on one of the > injection sites. confusion, vision problems,vomiting, sleeps constanly, > can't eat (tho his stomach is growling) etc, etc....One day he took > medication and didn't know what he took, he came into the room with white > powder residue on his mouth, I had to induce vomiting. I am awaiting a call > back from Dr's office,we are not going to continue on ths course of > treatment, he is worst instead of better. When he doesn't take the > treatment he is back to normal eating, coherent, playing with dog, normal BP > etc.. > He flooded bathroom yesterday, as he didn't know how to turn off faucet. > Trying times, the mind is scrambled, unable to turn off this madness. > Phyllis > > > ____________ _________ _________ __ > > From: Jan Holman <janholmangmail (DOT) com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, September 14, 2009 11:40:31 AM > Subject: Re: (unknown) > > Phylllis - I know you asked the question of Diane, but I feel much the same > way. Of course, I never forget that I have it, but it isn't the topmost > thing on my mind. Some of the side effects are on my mind every day, the > lack of energy, having to ration it to do what I want to do including > reading all these emails and the emails from other sources. But, I think > it is the acceptance of my medical problems, finding new ways of doing > things that don't require so much energy, spacing activities, staying as > active as possible. And my faith makes it so much easier to not become > cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid > disease, I haven't even bothered to find out what effects hasimotos disease > has on me. I am not my medical problems. I am a child of God with a job to > do here on earth. The most troublesome problem on a daily basis, and > comparitively rather minor, is osteo arthritis. It keeps reminding you with > pain. But when you know God is with you, that is so much more important > than how you might leave this world, or what will happen to you while you > are here. Now when I had an abcessed tooth that really flared up after my > last angioplasty, hurt from the top of my head down the side of my neck, > that was hard to keep out of my mind,[?] but I still continued to do as > much > as possible. Jan H > > On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com > >wrote: > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to > > accomplish that? > > > > > > > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 10:10:30 PM > > Subject: Re: (unknown) > > > > > > Yes, Dave, Hospice care is for the end-of-life and is something you > > shouldn't consider until you have made your decision regarding > > transplant. Give it much thought and consideration, both for yourself and > > your grandson. > > > > None of us knows the number of our days. We walk about every day living > > like we think we will live forever; but the truth is that any of us could > go > > within the next minute. I don't allow the thought that I have cirrhosis > to > > occupy too much of my time. I live my life and try my best to take care > of > > myself. When my time comes, it comes; end of story. I'm not a fatalist, > > just a realist. > > > > I am always here if you need a friend or an ear to listen. I can't hide > my > > faith, but I won't shove it down your throat either. Good luck with the > > call to your doctor tomorrow! > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:57:15 PM > > Subject: Re: (unknown) > > > > > > Diane, thanks for the moral support, and for praying for me. I guess you > > could say, Lord knows I need it. What you were saying about my grandson > is > > very true. His Grandmother, my X, is very sick also. He could easily lose > > out on knowing either of us well. He just turned two. My circumstances > are > > so much better than some that it annoys me I get on so much self-pity. I > > could, when time comes, look into hospice. I think hospice is for the > last > > 6 months. I may be wrong, though. I don't know how far away I am from > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than > 4 > > yrs. ago. My liver doc would not give me a length, saying he does nor > > forecast the future. I appreciated him for that answer, and the others > for > > their honesty. As they say be careful what you ask. I kind of wish now, > > when I asked, the other's would not have told me. I am sure they were > going > > by percentage's giving my symptoms. If they > > were correct I am about 16 months away. As I have often thought, since > > their prediction, very few really know how long they have or how they > will > > go. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:23:35 PM > > Subject: Re: (unknown) > > > > > > Dave, you have in no way offended me. To say that have faith, without > > question, is certainly far from reality. I have come to a place in my > life > > where I rarely allow myself to question God; that has not always been so. > I > > struggled with my faith for many, many years through some terribly > difficult > > circumstances. I hope I won't offend you by saying I will pray for you > and > > ask you not to give up on God. He hasn't given up on you. > > > > That being said, I do honestly care about you and about what you are > going > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > > the unknown and leads us down paths we never dreamed we would have to > walk. > > Uncertainly and depression are familiar friends. I do so hope your doctor > > can help you with the edema. BTW, I just wanted to add that you should > give > > serious consideration to that transplant. Whether you do it or not, give > it > > every chance when deciding. You have a beautiful grandson who would so > > desperately miss his Grandpa, and I'd be willing to bet your daughter > would > > sure miss you too! Sometimes, bad things happen to good people so they > can > > reacess their lives and make fresh starts. > > > > I'm praying for you Dave! > > > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:13:15 PM > > Subject: Re: (unknown) > > > > > > Diane, this is one of my biggest problems. I do not have a strong belief > > in the here after, religion, etc. I do not want to offend those that do. > I > > wish I did, but I don't. I see how much it helps people, but I have not > > been able to grasp the concept. I come from a family that both parents > were > > strong believers and they took me to church regularly. I don't know why I > > have had such a hard time with faith. I am not of the belief that the > world > > happened in a vacuum. There is a degree of spirituality in me. I'm sure > > you don't want me to go into the usual talk of why bad things happen to > good > > people and good things happen to bad people. I just am unable to square > the > > suffering people endure with the idea of God having his hand on the > > throttle, so to speak. I hope I have not offended you or anyone. I admire > > your ability to believe without question. I know there is a force of good > > in the universe, and certainly a evil in the > > universe. I know it would help me if I had your faith, but it avoids me > or > > I avoid it. Whichever way it is, the outcome for me is the same, lack of > > faith for which I, in the end, pay the price. > > Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:28:49 PM > > Subject: Re: (unknown) > > > > > > Hi Dave, > > > > No, Terry opted not to try for a transplant. He had been at death's door > a > > couple of times prior to even knowing about his liver disease. He felt > much > > more peaceful about death than dealing with life after a transplant. > Also, > > he had a genetic disorder that predisposed him to liver disease. He > thought > > it would be selfish of him to ask for a donor liver, knowing his body > would > > begin attacking it as soon as it was transplanted, when so few are > > available. It was so hard to sit by and watch him make that decision, but > I > > had watched Momma die of renal failure and had seen all she had gone > through > > with the dialysis and didn't want to emotionally force anything on Terry > > that he wasn't ready to deal with. I told him I would support him fully > in > > whatever decision he made; if he chose to go for the transplant, I would > be > > there every step of the way but if not, I would also help him live his > life > > to the fullest until the time came for him to go home > > with the Lord. As hard as it was to give him up, I did so knowing I had > > done for him what his heart desired and loved him completely until Jesus > > came for him. > > > > Now that I have cirrhosis as well, I am much in the same boat as > > you. Terry and I had three children who never made it to this world. I > > have two sisters and a niece and four nephews who love me dearly. > However, > > I am not comfortable asking them to take on the role of my caregiver as > this > > disease progresses. I know how hard that is on the loved one and I don't > > want them to have to go through that. I have already started checking in > to > > in-patient hospice care for when that time comes. Whether I will consider > a > > transplant or not is something I haven't really even thought about yet. I > > pray about it and just ask the Lord to help me make the right decision > when > > the time comes. > > > > Whatever decision you make, please know that I am praying for you. I do > > not look forward to dealing with this disease, but I also don't allow > myself > > to worry about it. I simply leave it with the Lord and know He already > has > > a plan and all I have to do is submit myself to His will and plan for my > > life. My faith carries me through this, just as it has through so many > > other areas of my life. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:05:45 PM > > Subject: Re: (unknown) > > > > > > Thanks for writing back Diane..And I am sorry you had to go through this > > with your husband...I know from dealing with close friends and family how > > difficult a progressive fatal disease is on the caregiver and others > > close..if I may ask, did your husband have a transplant? I am wrestling > > with that decision when it comes, and whether to put myself and family > > through that. I don't really have someone I can move in with during the > > recovery process, and would not put that burden on my daughter and her > > significant other. For one there is not room in her house, except a > > finished basement, and I don't see how someone could negotiate the stairs > in > > that condition. For another reason her relationship is fragile I believe, > > and that would certainly not help, and though we are civil, we really > don't > > care a lot for each other. I know some go into medical centers to > > recuperate and I'm fine with that option, since likely the progression > > either way will put > > me into one, but I still have a lot of soul searching to do about a > > transplant. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 4:42:49 PM > > Subject: Re: (unknown) > > > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > > nerves and makes you so sad, so often. Please know I am praying for you. > > Do make that call to your doctor tomorrow morning, especially since this > is > > your first experience with the swelling in your extremities. Terry, my > late > > husband, used to swell so badly in his feet that he couldn't walk because > > his feet would actually be rounded on the bottom and wouldn't flaten out, > > even when he was fully weight-bearing. I cannot say I know what you are > > going through from my personal experience, but I do know from having been > > with Terry as he went through it. It is agonizing for you and for those > who > > love you. Again, I am so sorry that this has infringed upon your weekend > > with your daughter and grandson. Please update us after you speak with > your > > doctor. My prayers are with you. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 11:59:08 AM > > Subject: (unknown) > > > > > > I'm sorry I only seem to come here when things are bad, but seems they > are > > mostly that way now...what has always been a great weekend when my > daughter > > and grandson come up was full of agony for most of my visit...my legs, > feet, > > and ankles swelled up so bad I could hardly walk, and my feet hurt very > > bad...finally this noon the swelling has mostly gone down..but I wonder > for > > how long? I should call my doc tomorrow, but I get weary of doc's...this > is > > a first in my journey of my feet and ankles swelling like this...I > thought > > the ascites was bad, but that is more horrific..walking is terrible and > just > > laying with my feet up to try and make the pain go away...and knowing > things > > will, only progress into being worse... > > Dave > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Phyllis, I am SO sorry! I keep calling Phil the wrong name! My mind is a mess and I so apologize! I suppose I must have had Jill's husband on my mind because I have been exchanging emails with her as well. Jill, I apologize to you as well! I may not know who I'm talking about, but the Lord does and I'm praying for you all! Warm Hugs........... Di http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 7:01:19 PM Subject: Re: (unknown) Phil & I thank you. Yes, one day at a time. ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 2:35:19 PM Subject: Re: (unknown) Terry never had to deal with excess iron, so never dealt with these treatments. I know this does put an entirely new face on dealing with the disease. The other things you mentioned, we did deal with on a progressively worse basis as time went by. We just dealt with whatever was happening at the moment and then moved on until the next hurdle presented itself. I am praying for you and Ed. I know it is hard and the days and nights are long. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 4:52:38 PM Subject: Re: (unknown) Thx Jan I try to not let it occupy our lives but it is there, every day, reminding us of our limitations. My husband is currently on a 12 hr home infusion of deferoxamine( remove excess iron) which I have to administer every other day. This is his sixth treatment and every day we encounter new issues, an infection on one of the injection sites. confusion, vision problems,vomiting, sleeps constanly, can't eat (tho his stomach is growling) etc, etc....One day he took medication and didn't know what he took, he came into the room with white powder residue on his mouth, I had to induce vomiting. I am awaiting a call back from Dr's office,we are not going to continue on ths course of treatment, he is worst instead of better. When he doesn't take the treatment he is back to normal eating, coherent, playing with dog, normal BP etc.. He flooded bathroom yesterday, as he didn't know how to turn off faucet. Trying times, the mind is scrambled, unable to turn off this madness. Phyllis ____________ _________ _________ __ From: Jan Holman <janholmangmail (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, September 14, 2009 11:40:31 AM Subject: Re: (unknown) Phylllis - I know you asked the question of Diane, but I feel much the same way. Of course, I never forget that I have it, but it isn't the topmost thing on my mind. Some of the side effects are on my mind every day, the lack of energy, having to ration it to do what I want to do including reading all these emails and the emails from other sources. But, I think it is the acceptance of my medical problems, finding new ways of doing things that don't require so much energy, spacing activities, staying as active as possible. And my faith makes it so much easier to not become cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid disease, I haven't even bothered to find out what effects hasimotos disease has on me. I am not my medical problems. I am a child of God with a job to do here on earth. The most troublesome problem on a daily basis, and comparitively rather minor, is osteo arthritis. It keeps reminding you with pain. But when you know God is with you, that is so much more important than how you might leave this world, or what will happen to you while you are here. Now when I had an abcessed tooth that really flared up after my last angioplasty, hurt from the top of my head down the side of my neck, that was hard to keep out of my mind,[?] but I still continued to do as much as possible. Jan H On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com>wrote: > wow, you don't let cirrhosis occupy your mind much? Tell me how to > accomplish that? > > > > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 10:10:30 PM > Subject: Re: (unknown) > > > Yes, Dave, Hospice care is for the end-of-life and is something you > shouldn't consider until you have made your decision regarding > transplant. Give it much thought and consideration, both for yourself and > your grandson. > > None of us knows the number of our days. We walk about every day living > like we think we will live forever; but the truth is that any of us could go > within the next minute. I don't allow the thought that I have cirrhosis to > occupy too much of my time. I live my life and try my best to take care of > myself. When my time comes, it comes; end of story. I'm not a fatalist, > just a realist. > > I am always here if you need a friend or an ear to listen. I can't hide my > faith, but I won't shove it down your throat either. Good luck with the > call to your doctor tomorrow! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:57:15 PM > Subject: Re: (unknown) > > > Diane, thanks for the moral support, and for praying for me. I guess you > could say, Lord knows I need it. What you were saying about my grandson is > very true. His Grandmother, my X, is very sick also. He could easily lose > out on knowing either of us well. He just turned two. My circumstances are > so much better than some that it annoys me I get on so much self-pity. I > could, when time comes, look into hospice. I think hospice is for the last > 6 months. I may be wrong, though. I don't know how far away I am from > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 > yrs. ago. My liver doc would not give me a length, saying he does nor > forecast the future. I appreciated him for that answer, and the others for > their honesty. As they say be careful what you ask. I kind of wish now, > when I asked, the other's would not have told me. I am sure they were going > by percentage's giving my symptoms. If they > were correct I am about 16 months away. As I have often thought, since > their prediction, very few really know how long they have or how they will > go. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:23:35 PM > Subject: Re: (unknown) > > > Dave, you have in no way offended me. To say that have faith, without > question, is certainly far from reality. I have come to a place in my life > where I rarely allow myself to question God; that has not always been so. I > struggled with my faith for many, many years through some terribly difficult > circumstances. I hope I won't offend you by saying I will pray for you and > ask you not to give up on God. He hasn't given up on you. > > That being said, I do honestly care about you and about what you are going > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > the unknown and leads us down paths we never dreamed we would have to walk. > Uncertainly and depression are familiar friends. I do so hope your doctor > can help you with the edema. BTW, I just wanted to add that you should give > serious consideration to that transplant. Whether you do it or not, give it > every chance when deciding. You have a beautiful grandson who would so > desperately miss his Grandpa, and I'd be willing to bet your daughter would > sure miss you too! Sometimes, bad things happen to good people so they can > reacess their lives and make fresh starts. > > I'm praying for you Dave! > > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:13:15 PM > Subject: Re: (unknown) > > > Diane, this is one of my biggest problems. I do not have a strong belief > in the here after, religion, etc. I do not want to offend those that do. I > wish I did, but I don't. I see how much it helps people, but I have not > been able to grasp the concept. I come from a family that both parents were > strong believers and they took me to church regularly. I don't know why I > have had such a hard time with faith. I am not of the belief that the world > happened in a vacuum. There is a degree of spirituality in me. I'm sure > you don't want me to go into the usual talk of why bad things happen to good > people and good things happen to bad people. I just am unable to square the > suffering people endure with the idea of God having his hand on the > throttle, so to speak. I hope I have not offended you or anyone. I admire > your ability to believe without question. I know there is a force of good > in the universe, and certainly a evil in the > universe. I know it would help me if I had your faith, but it avoids me or > I avoid it. Whichever way it is, the outcome for me is the same, lack of > faith for which I, in the end, pay the price. > Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:28:49 PM > Subject: Re: (unknown) > > > Hi Dave, > > No, Terry opted not to try for a transplant. He had been at death's door a > couple of times prior to even knowing about his liver disease. He felt much > more peaceful about death than dealing with life after a transplant. Also, > he had a genetic disorder that predisposed him to liver disease. He thought > it would be selfish of him to ask for a donor liver, knowing his body would > begin attacking it as soon as it was transplanted, when so few are > available. It was so hard to sit by and watch him make that decision, but I > had watched Momma die of renal failure and had seen all she had gone through > with the dialysis and didn't want to emotionally force anything on Terry > that he wasn't ready to deal with. I told him I would support him fully in > whatever decision he made; if he chose to go for the transplant, I would be > there every step of the way but if not, I would also help him live his life > to the fullest until the time came for him to go home > with the Lord. As hard as it was to give him up, I did so knowing I had > done for him what his heart desired and loved him completely until Jesus > came for him. > > Now that I have cirrhosis as well, I am much in the same boat as > you. Terry and I had three children who never made it to this world. I > have two sisters and a niece and four nephews who love me dearly. However, > I am not comfortable asking them to take on the role of my caregiver as this > disease progresses. I know how hard that is on the loved one and I don't > want them to have to go through that. I have already started checking in to > in-patient hospice care for when that time comes. Whether I will consider a > transplant or not is something I haven't really even thought about yet. I > pray about it and just ask the Lord to help me make the right decision when > the time comes. > > Whatever decision you make, please know that I am praying for you. I do > not look forward to dealing with this disease, but I also don't allow myself > to worry about it. I simply leave it with the Lord and know He already has > a plan and all I have to do is submit myself to His will and plan for my > life. My faith carries me through this, just as it has through so many > other areas of my life. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:05:45 PM > Subject: Re: (unknown) > > > Thanks for writing back Diane..And I am sorry you had to go through this > with your husband...I know from dealing with close friends and family how > difficult a progressive fatal disease is on the caregiver and others > close..if I may ask, did your husband have a transplant? I am wrestling > with that decision when it comes, and whether to put myself and family > through that. I don't really have someone I can move in with during the > recovery process, and would not put that burden on my daughter and her > significant other. For one there is not room in her house, except a > finished basement, and I don't see how someone could negotiate the stairs in > that condition. For another reason her relationship is fragile I believe, > and that would certainly not help, and though we are civil, we really don't > care a lot for each other. I know some go into medical centers to > recuperate and I'm fine with that option, since likely the progression > either way will put > me into one, but I still have a lot of soul searching to do about a > transplant. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 4:42:49 PM > Subject: Re: (unknown) > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > nerves and makes you so sad, so often. Please know I am praying for you. > Do make that call to your doctor tomorrow morning, especially since this is > your first experience with the swelling in your extremities. Terry, my late > husband, used to swell so badly in his feet that he couldn't walk because > his feet would actually be rounded on the bottom and wouldn't flaten out, > even when he was fully weight-bearing. I cannot say I know what you are > going through from my personal experience, but I do know from having been > with Terry as he went through it. It is agonizing for you and for those who > love you. Again, I am so sorry that this has infringed upon your weekend > with your daughter and grandson. Please update us after you speak with your > doctor. My prayers are with you. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 11:59:08 AM > Subject: (unknown) > > > I'm sorry I only seem to come here when things are bad, but seems they are > mostly that way now...what has always been a great weekend when my daughter > and grandson come up was full of agony for most of my visit...my legs, feet, > and ankles swelled up so bad I could hardly walk, and my feet hurt very > bad...finally this noon the swelling has mostly gone down..but I wonder for > how long? I should call my doc tomorrow, but I get weary of doc's...this is > a first in my journey of my feet and ankles swelling like this...I thought > the ascites was bad, but that is more horrific..walking is terrible and just > laying with my feet up to try and make the pain go away...and knowing things > will, only progress into being worse... > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Praying for a safe journey Dave! We'll be here when you get back! Warm Hugs........... Di http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Monday, September 14, 2009 7:20:49 PM Subject: (unknown) I have to go to St. Louis tomarrow for several days and will be away from my computer..I send you all hopes of peace and comfort. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 i hear ya girl, i dont think i could ever love again after bobby glenn, it would be wierd like he was up the watching me be naughty lol. i dont know what i am gonna do when it all ends, i admire your strenghth!!! love you > > From: dave dodds <daveliltoe@ yahoo. com> > Subject: Re: (unknown) > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Sunday, September 13, 2009, 7:57 PM > > > > Diane, thanks for the moral support, and for praying for me. I guess you could say, Lord knows I need it. What you were saying about my grandson is very true. His Grandmother, my X, is very sick also. He could easily lose out on knowing either of us well. He just turned two. My circumstances are so much better than some that it annoys me I get on so much self-pity. I could, when time comes, look into hospice. I think hospice is for the last 6 months. I may be wrong, though. I don't know how far away I am from needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 yrs. ago. My liver doc would not give me a length, saying he does nor forecast the future. I appreciated him for that answer, and the others for their honesty. As they say be careful what you ask. I kind of wish now, when I asked, the other's would not have told me. I am sure they were going by percentage's giving my symptoms. If they > were correct I am about 16 months away. As I have often thought, since their prediction, very few really know how long they have or how they will go. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:23:35 PM > Subject: Re: (unknown) > > > Dave, you have in no way offended me. To say that have faith, without question, is certainly far from reality. I have come to a place in my life where I rarely allow myself to question God; that has not always been so... I struggled with my faith for many, many years through some terribly difficult circumstances. I hope I won't offend you by saying I will pray for you and ask you not to give up on God. He hasn't given up on you. > > That being said, I do honestly care about you and about what you are going through. Cirrhosis is hard, just plain HARD. Every day is a journey into the unknown and leads us down paths we never dreamed we would have to walk. Uncertainly and depression are familiar friends. I do so hope your doctor can help you with the edema. BTW, I just wanted to add that you should give serious consideration to that transplant. Whether you do it or not, give it every chance when deciding. You have a beautiful grandson who would so desperately miss his Grandpa, and I'd be willing to bet your daughter would sure miss you too! Sometimes, bad things happen to good people so they can reacess their lives and make fresh starts. > > I'm praying for you Dave! > > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:13:15 PM > Subject: Re: (unknown) > > > Diane, this is one of my biggest problems. I do not have a strong belief in the here after, religion, etc. I do not want to offend those that do. I wish I did, but I don't. I see how much it helps people, but I have not been able to grasp the concept. I come from a family that both parents were strong believers and they took me to church regularly. I don't know why I have had such a hard time with faith. I am not of the belief that the world happened in a vacuum. There is a degree of spirituality in me. I'm sure you don't want me to go into the usual talk of why bad things happen to good people and good things happen to bad people... I just am unable to square the suffering people endure with the idea of God having his hand on the throttle, so to speak. I hope I have not offended you or anyone. I admire your ability to believe without question. I know there is a force of good in the universe, and certainly a evil in the > universe. I know it would help me if I had your faith, but it avoids me or I avoid it. Whichever way it is, the outcome for me is the same, lack of faith for which I, in the end, pay the price. > Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:28:49 PM > Subject: Re: (unknown) > > > Hi Dave, > > No, Terry opted not to try for a transplant. He had been at death's door a couple of times prior to even knowing about his liver disease. He felt much more peaceful about death than dealing with life after a transplant. Also, he had a genetic disorder that predisposed him to liver disease. He thought it would be selfish of him to ask for a donor liver, knowing his body would begin attacking it as soon as it was transplanted, when so few are available. It was so hard to sit by and watch him make that decision, but I had watched Momma die of renal failure and had seen all she had gone through with the dialysis and didn't want to emotionally force anything on Terry that he wasn't ready to deal with. I told him I would support him fully in whatever decision he made; if he chose to go for the transplant, I would be there every step of the way but if not, I would also help him live his life to the fullest until the time came for him to go home > with the Lord. As hard as it was to give him up, I did so knowing I had done for him what his heart desired and loved him completely until Jesus came for him. > > Now that I have cirrhosis as well, I am much in the same boat as you. Terry and I had three children who never made it to this world. I have two sisters and a niece and four nephews who love me dearly. However, I am not comfortable asking them to take on the role of my caregiver as this disease progresses. I know how hard that is on the loved one and I don't want them to have to go through that. I have already started checking in to in-patient hospice care for when that time comes. Whether I will consider a transplant or not is something I haven't really even thought about yet. I pray about it and just ask the Lord to help me make the right decision when the time comes. > > Whatever decision you make, please know that I am praying for you. I do not look forward to dealing with this disease, but I also don't allow myself to worry about it. I simply leave it with the Lord and know He already has a plan and all I have to do is submit myself to His will and plan for my life. My faith carries me through this, just as it has through so many other areas of my life. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:05:45 PM > Subject: Re: (unknown) > > > Thanks for writing back Diane..And I am sorry you had to go through this with your husband...I know from dealing with close friends and family how difficult a progressive fatal disease is on the caregiver and others close..if I may ask, did your husband have a transplant? I am wrestling with that decision when it comes, and whether to put myself and family through that. I don't really have someone I can move in with during the recovery process, and would not put that burden on my daughter and her significant other. For one there is not room in her house, except a finished basement, and I don't see how someone could negotiate the stairs in that condition. For another reason her relationship is fragile I believe, and that would certainly not help, and though we are civil, we really don't care a lot for each other. I know some go into medical centers to recuperate and I'm fine with that option, since likely the progression either way will put > me into one, but I still have a lot of soul searching to do about a transplant. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 4:42:49 PM > Subject: Re: (unknown) > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your nerves and makes you so sad, so often. Please know I am praying for you. Do make that call to your doctor tomorrow morning, especially since this is your first experience with the swelling in your extremities. Terry, my late husband, used to swell so badly in his feet that he couldn't walk because his feet would actually be rounded on the bottom and wouldn't flaten out, even when he was fully weight-bearing. I cannot say I know what you are going through from my personal experience, but I do know from having been with Terry as he went through it. It is agonizing for you and for those who love you. Again, I am so sorry that this has infringed upon your weekend with your daughter and grandson. Please update us after you speak with your doctor. My prayers are with you. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 11:59:08 AM > Subject: (unknown) > > > I'm sorry I only seem to come here when things are bad, but seems they are mostly that way now...what has always been a great weekend when my daughter and grandson come up was full of agony for most of my visit...my legs, feet, and ankles swelled up so bad I could hardly walk, and my feet hurt very bad...finally this noon the swelling has mostly gone down..but I wonder for how long? I should call my doc tomorrow, but I get weary of doc's...this is a first in my journey of my feet and ankles swelling like this...I thought the ascites was bad, but that is more horrific..walking is terrible and just laying with my feet up to try and make the pain go away...and knowing things will, only progress into being worse... > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Dave I have ESLD Stage 4 and it tood me over six months to be approved. Just keep that in mind. I am waiting for a kidney/liver transplant. Thanks be to God for he creates our tomorrows Love, Lyncia > > > Diane, thanks for the moral support, and for praying for me. I guess you > > could say, Lord knows I need it. What you were saying about my grandson is > > very true. His Grandmother, my X, is very sick also. He could easily lose > > out on knowing either of us well. He just turned two. My circumstances are > > so much better than some that it annoys me I get on so much self-pity. I > > could, when time comes, look into hospice. I think hospice is for the last > > 6 months. I may be wrong, though. I don't know how far away I am from > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 > > yrs. ago. My liver doc would not give me a length, saying he does nor > > forecast the future. I appreciated him for that answer, and the others for > > their honesty. As they say be careful what you ask. I kind of wish now, > > when I asked, the other's would not have told me. I am sure they were going > > by percentage's giving my symptoms. If they > > were correct I am about 16 months away. As I have often thought, since > > their prediction, very few really know how long they have or how they will > > go. Dave > > > > > > > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:23:35 PM > > Subject: Re: (unknown) > > > > > > Dave, you have in no way offended me. To say that have faith, without > > question, is certainly far from reality. I have come to a place in my life > > where I rarely allow myself to question God; that has not always been so. I > > struggled with my faith for many, many years through some terribly difficult > > circumstances. I hope I won't offend you by saying I will pray for you and > > ask you not to give up on God. He hasn't given up on you. > > > > That being said, I do honestly care about you and about what you are going > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > > the unknown and leads us down paths we never dreamed we would have to walk. > > Uncertainly and depression are familiar friends. I do so hope your doctor > > can help you with the edema. BTW, I just wanted to add that you should give > > serious consideration to that transplant. Whether you do it or not, give it > > every chance when deciding. You have a beautiful grandson who would so > > desperately miss his Grandpa, and I'd be willing to bet your daughter would > > sure miss you too! Sometimes, bad things happen to good people so they can > > reacess their lives and make fresh starts. > > > > I'm praying for you Dave! > > > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:13:15 PM > > Subject: Re: (unknown) > > > > > > Diane, this is one of my biggest problems. I do not have a strong belief > > in the here after, religion, etc. I do not want to offend those that do. I > > wish I did, but I don't. I see how much it helps people, but I have not > > been able to grasp the concept. I come from a family that both parents were > > strong believers and they took me to church regularly. I don't know why I > > have had such a hard time with faith. I am not of the belief that the world > > happened in a vacuum. There is a degree of spirituality in me. I'm sure > > you don't want me to go into the usual talk of why bad things happen to good > > people and good things happen to bad people. I just am unable to square the > > suffering people endure with the idea of God having his hand on the > > throttle, so to speak. I hope I have not offended you or anyone. I admire > > your ability to believe without question. I know there is a force of good > > in the universe, and certainly a evil in the > > universe. I know it would help me if I had your faith, but it avoids me or > > I avoid it. Whichever way it is, the outcome for me is the same, lack of > > faith for which I, in the end, pay the price. > > Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:28:49 PM > > Subject: Re: (unknown) > > > > > > Hi Dave, > > > > No, Terry opted not to try for a transplant. He had been at death's door a > > couple of times prior to even knowing about his liver disease. He felt much > > more peaceful about death than dealing with life after a transplant. Also, > > he had a genetic disorder that predisposed him to liver disease. He thought > > it would be selfish of him to ask for a donor liver, knowing his body would > > begin attacking it as soon as it was transplanted, when so few are > > available. It was so hard to sit by and watch him make that decision, but I > > had watched Momma die of renal failure and had seen all she had gone through > > with the dialysis and didn't want to emotionally force anything on Terry > > that he wasn't ready to deal with. I told him I would support him fully in > > whatever decision he made; if he chose to go for the transplant, I would be > > there every step of the way but if not, I would also help him live his life > > to the fullest until the time came for him to go home > > with the Lord. As hard as it was to give him up, I did so knowing I had > > done for him what his heart desired and loved him completely until Jesus > > came for him. > > > > Now that I have cirrhosis as well, I am much in the same boat as > > you. Terry and I had three children who never made it to this world. I > > have two sisters and a niece and four nephews who love me dearly. However, > > I am not comfortable asking them to take on the role of my caregiver as this > > disease progresses. I know how hard that is on the loved one and I don't > > want them to have to go through that. I have already started checking in to > > in-patient hospice care for when that time comes. Whether I will consider a > > transplant or not is something I haven't really even thought about yet. I > > pray about it and just ask the Lord to help me make the right decision when > > the time comes. > > > > Whatever decision you make, please know that I am praying for you. I do > > not look forward to dealing with this disease, but I also don't allow myself > > to worry about it. I simply leave it with the Lord and know He already has > > a plan and all I have to do is submit myself to His will and plan for my > > life. My faith carries me through this, just as it has through so many > > other areas of my life. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:05:45 PM > > Subject: Re: (unknown) > > > > > > Thanks for writing back Diane..And I am sorry you had to go through this > > with your husband...I know from dealing with close friends and family how > > difficult a progressive fatal disease is on the caregiver and others > > close..if I may ask, did your husband have a transplant? I am wrestling > > with that decision when it comes, and whether to put myself and family > > through that. I don't really have someone I can move in with during the > > recovery process, and would not put that burden on my daughter and her > > significant other. For one there is not room in her house, except a > > finished basement, and I don't see how someone could negotiate the stairs in > > that condition. For another reason her relationship is fragile I believe, > > and that would certainly not help, and though we are civil, we really don't > > care a lot for each other. I know some go into medical centers to > > recuperate and I'm fine with that option, since likely the progression > > either way will put > > me into one, but I still have a lot of soul searching to do about a > > transplant. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 4:42:49 PM > > Subject: Re: (unknown) > > > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > > nerves and makes you so sad, so often. Please know I am praying for you. > > Do make that call to your doctor tomorrow morning, especially since this is > > your first experience with the swelling in your extremities. Terry, my late > > husband, used to swell so badly in his feet that he couldn't walk because > > his feet would actually be rounded on the bottom and wouldn't flaten out, > > even when he was fully weight-bearing. I cannot say I know what you are > > going through from my personal experience, but I do know from having been > > with Terry as he went through it. It is agonizing for you and for those who > > love you. Again, I am so sorry that this has infringed upon your weekend > > with your daughter and grandson. Please update us after you speak with your > > doctor. My prayers are with you. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 11:59:08 AM > > Subject: (unknown) > > > > > > I'm sorry I only seem to come here when things are bad, but seems they are > > mostly that way now...what has always been a great weekend when my daughter > > and grandson come up was full of agony for most of my visit...my legs, feet, > > and ankles swelled up so bad I could hardly walk, and my feet hurt very > > bad...finally this noon the swelling has mostly gone down..but I wonder for > > how long? I should call my doc tomorrow, but I get weary of doc's...this is > > a first in my journey of my feet and ankles swelling like this...I thought > > the ascites was bad, but that is more horrific..walking is terrible and just > > laying with my feet up to try and make the pain go away...and knowing things > > will, only progress into being worse... > > Dave > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Di, I am so so tired of being alone but more scared to have a bad relationship; Thanks be to God for he creates our tomorrows Love, Lyncia From: dave dodds <daveliltoe@ yahoo. com> Subject: Re: (unknown) To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, September 13, 2009, 7:57 PM Diane, thanks for the moral support, and for praying for me. I guess you could say, Lord knows I need it. What you were saying about my grandson is very true. His Grandmother, my X, is very sick also. He could easily lose out on knowing either of us well. He just turned two. My circumstances are so much better than some that it annoys me I get on so much self-pity. I could, when time comes, look into hospice. I think hospice is for the last 6 months. I may be wrong, though. I don't know how far away I am from needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 yrs. ago. My liver doc would not give me a length, saying he does nor forecast the future. I appreciated him for that answer, and the others for their honesty. As they say be careful what you ask. I kind of wish now, when I asked, the other's would not have told me. I am sure they were going by percentage's giving my symptoms. If they were correct I am about 16 months away. As I have often thought, since their prediction, very few really know how long they have or how they will go. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 6:23:35 PM Subject: Re: (unknown) Dave, you have in no way offended me. To say that have faith, without question, is certainly far from reality. I have come to a place in my life where I rarely allow myself to question God; that has not always been so... I struggled with my faith for many, many years through some terribly difficult circumstances. I hope I won't offend you by saying I will pray for you and ask you not to give up on God. He hasn't given up on you. That being said, I do honestly care about you and about what you are going through. Cirrhosis is hard, just plain HARD. Every day is a journey into the unknown and leads us down paths we never dreamed we would have to walk. Uncertainly and depression are familiar friends. I do so hope your doctor can help you with the edema. BTW, I just wanted to add that you should give serious consideration to that transplant. Whether you do it or not, give it every chance when deciding. You have a beautiful grandson who would so desperately miss his Grandpa, and I'd be willing to bet your daughter would sure miss you too! Sometimes, bad things happen to good people so they can reacess their lives and make fresh starts. I'm praying for you Dave! Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 6:13:15 PM Subject: Re: (unknown) Diane, this is one of my biggest problems. I do not have a strong belief in the here after, religion, etc. I do not want to offend those that do. I wish I did, but I don't. I see how much it helps people, but I have not been able to grasp the concept. I come from a family that both parents were strong believers and they took me to church regularly. I don't know why I have had such a hard time with faith. I am not of the belief that the world happened in a vacuum. There is a degree of spirituality in me. I'm sure you don't want me to go into the usual talk of why bad things happen to good people and good things happen to bad people... I just am unable to square the suffering people endure with the idea of God having his hand on the throttle, so to speak. I hope I have not offended you or anyone. I admire your ability to believe without question. I know there is a force of good in the universe, and certainly a evil in the universe. I know it would help me if I had your faith, but it avoids me or I avoid it. Whichever way it is, the outcome for me is the same, lack of faith for which I, in the end, pay the price. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 5:28:49 PM Subject: Re: (unknown) Hi Dave, No, Terry opted not to try for a transplant. He had been at death's door a couple of times prior to even knowing about his liver disease. He felt much more peaceful about death than dealing with life after a transplant. Also, he had a genetic disorder that predisposed him to liver disease. He thought it would be selfish of him to ask for a donor liver, knowing his body would begin attacking it as soon as it was transplanted, when so few are available. It was so hard to sit by and watch him make that decision, but I had watched Momma die of renal failure and had seen all she had gone through with the dialysis and didn't want to emotionally force anything on Terry that he wasn't ready to deal with. I told him I would support him fully in whatever decision he made; if he chose to go for the transplant, I would be there every step of the way but if not, I would also help him live his life to the fullest until the time came for him to go home with the Lord. As hard as it was to give him up, I did so knowing I had done for him what his heart desired and loved him completely until Jesus came for him. Now that I have cirrhosis as well, I am much in the same boat as you. Terry and I had three children who never made it to this world. I have two sisters and a niece and four nephews who love me dearly. However, I am not comfortable asking them to take on the role of my caregiver as this disease progresses. I know how hard that is on the loved one and I don't want them to have to go through that. I have already started checking in to in-patient hospice care for when that time comes. Whether I will consider a transplant or not is something I haven't really even thought about yet. I pray about it and just ask the Lord to help me make the right decision when the time comes. Whatever decision you make, please know that I am praying for you. I do not look forward to dealing with this disease, but I also don't allow myself to worry about it. I simply leave it with the Lord and know He already has a plan and all I have to do is submit myself to His will and plan for my life. My faith carries me through this, just as it has through so many other areas of my life. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 5:05:45 PM Subject: Re: (unknown) Thanks for writing back Diane..And I am sorry you had to go through this with your husband...I know from dealing with close friends and family how difficult a progressive fatal disease is on the caregiver and others close..if I may ask, did your husband have a transplant? I am wrestling with that decision when it comes, and whether to put myself and family through that. I don't really have someone I can move in with during the recovery process, and would not put that burden on my daughter and her significant other. For one there is not room in her house, except a finished basement, and I don't see how someone could negotiate the stairs in that condition. For another reason her relationship is fragile I believe, and that would certainly not help, and though we are civil, we really don't care a lot for each other. I know some go into medical centers to recuperate and I'm fine with that option, since likely the progression either way will put me into one, but I still have a lot of soul searching to do about a transplant. Dave ____________ _________ _________ __ From: diane chandler <dianechandler@ att.net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 4:42:49 PM Subject: Re: (unknown) Dave, I am so sorry. Dealing with this disease wears so quickly on your nerves and makes you so sad, so often. Please know I am praying for you. Do make that call to your doctor tomorrow morning, especially since this is your first experience with the swelling in your extremities. Terry, my late husband, used to swell so badly in his feet that he couldn't walk because his feet would actually be rounded on the bottom and wouldn't flaten out, even when he was fully weight-bearing. I cannot say I know what you are going through from my personal experience, but I do know from having been with Terry as he went through it. It is agonizing for you and for those who love you. Again, I am so sorry that this has infringed upon your weekend with your daughter and grandson. Please update us after you speak with your doctor. My prayers are with you. Warm Hugs........ ... Di http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: dave dodds <daveliltoe@ yahoo. com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Sunday, September 13, 2009 11:59:08 AM Subject: (unknown) I'm sorry I only seem to come here when things are bad, but seems they are mostly that way now...what has always been a great weekend when my daughter and grandson come up was full of agony for most of my visit...my legs, feet, and ankles swelled up so bad I could hardly walk, and my feet hurt very bad...finally this noon the swelling has mostly gone down..but I wonder for how long? I should call my doc tomorrow, but I get weary of doc's...this is a first in my journey of my feet and ankles swelling like this...I thought the ascites was bad, but that is more horrific..walking is terrible and just laying with my feet up to try and make the pain go away...and knowing things will, only progress into being worse... Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 it's okay, i knew who you were talking to! LOL!!!! Love,Jill We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. > wow, you don't let cirrhosis occupy your mind much? Tell me how to > accomplish that? > > > > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 10:10:30 PM > Subject: Re: (unknown) > > > Yes, Dave, Hospice care is for the end-of-life and is something you > shouldn't consider until you have made your decision regarding > transplant. Give it much thought and consideration, both for yourself and > your grandson. > > None of us knows the number of our days. We walk about every day living > like we think we will live forever; but the truth is that any of us could go > within the next minute. I don't allow the thought that I have cirrhosis to > occupy too much of my time. I live my life and try my best to take care of > myself. When my time comes, it comes; end of story. I'm not a fatalist, > just a realist. > > I am always here if you need a friend or an ear to listen. I can't hide my > faith, but I won't shove it down your throat either. Good luck with the > call to your doctor tomorrow! > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:57:15 PM > Subject: Re: (unknown) > > > Diane, thanks for the moral support, and for praying for me. I guess you > could say, Lord knows I need it. What you were saying about my grandson is > very true. His Grandmother, my X, is very sick also. He could easily lose > out on knowing either of us well. He just turned two. My circumstances are > so much better than some that it annoys me I get on so much self-pity. I > could, when time comes, look into hospice. I think hospice is for the last > 6 months. I may be wrong, though. I don't know how far away I am from > needing a transplant yet. Several doc's gave me 5 yrs. a little less than 4 > yrs. ago. My liver doc would not give me a length, saying he does nor > forecast the future. I appreciated him for that answer, and the others for > their honesty. As they say be careful what you ask. I kind of wish now, > when I asked, the other's would not have told me. I am sure they were going > by percentage's giving my symptoms. If they > were correct I am about 16 months away. As I have often thought, since > their prediction, very few really know how long they have or how they will > go. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:23:35 PM > Subject: Re: (unknown) > > > Dave, you have in no way offended me. To say that have faith, without > question, is certainly far from reality. I have come to a place in my life > where I rarely allow myself to question God; that has not always been so. I > struggled with my faith for many, many years through some terribly difficult > circumstances. I hope I won't offend you by saying I will pray for you and > ask you not to give up on God. He hasn't given up on you. > > That being said, I do honestly care about you and about what you are going > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > the unknown and leads us down paths we never dreamed we would have to walk. > Uncertainly and depression are familiar friends. I do so hope your doctor > can help you with the edema. BTW, I just wanted to add that you should give > serious consideration to that transplant. Whether you do it or not, give it > every chance when deciding. You have a beautiful grandson who would so > desperately miss his Grandpa, and I'd be willing to bet your daughter would > sure miss you too! Sometimes, bad things happen to good people so they can > reacess their lives and make fresh starts. > > I'm praying for you Dave! > > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 6:13:15 PM > Subject: Re: (unknown) > > > Diane, this is one of my biggest problems. I do not have a strong belief > in the here after, religion, etc. I do not want to offend those that do. I > wish I did, but I don't. I see how much it helps people, but I have not > been able to grasp the concept. I come from a family that both parents were > strong believers and they took me to church regularly. I don't know why I > have had such a hard time with faith. I am not of the belief that the world > happened in a vacuum. There is a degree of spirituality in me. I'm sure > you don't want me to go into the usual talk of why bad things happen to good > people and good things happen to bad people. I just am unable to square the > suffering people endure with the idea of God having his hand on the > throttle, so to speak. I hope I have not offended you or anyone. I admire > your ability to believe without question. I know there is a force of good > in the universe, and certainly a evil in the > universe. I know it would help me if I had your faith, but it avoids me or > I avoid it. Whichever way it is, the outcome for me is the same, lack of > faith for which I, in the end, pay the price. > Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:28:49 PM > Subject: Re: (unknown) > > > Hi Dave, > > No, Terry opted not to try for a transplant. He had been at death's door a > couple of times prior to even knowing about his liver disease. He felt much > more peaceful about death than dealing with life after a transplant. Also, > he had a genetic disorder that predisposed him to liver disease. He thought > it would be selfish of him to ask for a donor liver, knowing his body would > begin attacking it as soon as it was transplanted, when so few are > available. It was so hard to sit by and watch him make that decision, but I > had watched Momma die of renal failure and had seen all she had gone through > with the dialysis and didn't want to emotionally force anything on Terry > that he wasn't ready to deal with. I told him I would support him fully in > whatever decision he made; if he chose to go for the transplant, I would be > there every step of the way but if not, I would also help him live his life > to the fullest until the time came for him to go home > with the Lord. As hard as it was to give him up, I did so knowing I had > done for him what his heart desired and loved him completely until Jesus > came for him. > > Now that I have cirrhosis as well, I am much in the same boat as > you. Terry and I had three children who never made it to this world. I > have two sisters and a niece and four nephews who love me dearly. However, > I am not comfortable asking them to take on the role of my caregiver as this > disease progresses. I know how hard that is on the loved one and I don't > want them to have to go through that. I have already started checking in to > in-patient hospice care for when that time comes. Whether I will consider a > transplant or not is something I haven't really even thought about yet. I > pray about it and just ask the Lord to help me make the right decision when > the time comes. > > Whatever decision you make, please know that I am praying for you. I do > not look forward to dealing with this disease, but I also don't allow myself > to worry about it. I simply leave it with the Lord and know He already has > a plan and all I have to do is submit myself to His will and plan for my > life. My faith carries me through this, just as it has through so many > other areas of my life. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 5:05:45 PM > Subject: Re: (unknown) > > > Thanks for writing back Diane..And I am sorry you had to go through this > with your husband...I know from dealing with close friends and family how > difficult a progressive fatal disease is on the caregiver and others > close..if I may ask, did your husband have a transplant? I am wrestling > with that decision when it comes, and whether to put myself and family > through that. I don't really have someone I can move in with during the > recovery process, and would not put that burden on my daughter and her > significant other. For one there is not room in her house, except a > finished basement, and I don't see how someone could negotiate the stairs in > that condition. For another reason her relationship is fragile I believe, > and that would certainly not help, and though we are civil, we really don't > care a lot for each other. I know some go into medical centers to > recuperate and I'm fine with that option, since likely the progression > either way will put > me into one, but I still have a lot of soul searching to do about a > transplant. Dave > > ____________ _________ _________ __ > From: diane chandler <dianechandler@ att.net> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 4:42:49 PM > Subject: Re: (unknown) > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > nerves and makes you so sad, so often. Please know I am praying for you. > Do make that call to your doctor tomorrow morning, especially since this is > your first experience with the swelling in your extremities. Terry, my late > husband, used to swell so badly in his feet that he couldn't walk because > his feet would actually be rounded on the bottom and wouldn't flaten out, > even when he was fully weight-bearing. I cannot say I know what you are > going through from my personal experience, but I do know from having been > with Terry as he went through it. It is agonizing for you and for those who > love you. Again, I am so sorry that this has infringed upon your weekend > with your daughter and grandson. Please update us after you speak with your > doctor. My prayers are with you. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: dave dodds <daveliltoe@ yahoo. com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, September 13, 2009 11:59:08 AM > Subject: (unknown) > > > I'm sorry I only seem to come here when things are bad, but seems they are > mostly that way now...what has always been a great weekend when my daughter > and grandson come up was full of agony for most of my visit...my legs, feet, > and ankles swelled up so bad I could hardly walk, and my feet hurt very > bad...finally this noon the swelling has mostly gone down..but I wonder for > how long? I should call my doc tomorrow, but I get weary of doc's...this is > a first in my journey of my feet and ankles swelling like this...I thought > the ascites was bad, but that is more horrific..walking is terrible and just > laying with my feet up to try and make the pain go away...and knowing things > will, only progress into being worse... > Dave > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Phyllis, I may be the one who referred to him as your dad. As far as I know, I don't have hepatic encephalopathy, but I sure do get things mixed up, and forget things. Jan H On Mon, Sep 14, 2009 at 5:01 PM, Phyllis Delgado wrote: > Phil & I thank you. > Yes, one day at a time. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Monday, September 14, 2009 2:35:19 PM > Subject: Re: (unknown) > > > Terry never had to deal with excess iron, so never dealt with these > treatments. I know this does put an entirely new face on dealing with the > disease. The other things you mentioned, we did deal with on a > progressively worse basis as time went by. We just dealt with whatever was > happening at the moment and then moved on until the next hurdle presented > itself. I am praying for you and Ed. I know it is hard and the days and > nights are long. > > Warm Hugs........ ... > > Di > http://auntdisexper imentallife. blogspot. com/ > > ____________ _________ _________ __ > From: Phyllis Delgado <pdelgado354@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, September 14, 2009 4:52:38 PM > Subject: Re: (unknown) > > > Thx Jan > I try to not let it occupy our lives but it is there, every day, reminding > us of our limitations. > My husband is currently on a 12 hr home infusion of deferoxamine( remove > excess iron) which I have to administer every other day. This is his sixth > treatment and every day we encounter new issues, an infection on one of the > injection sites. confusion, vision problems,vomiting, sleeps constanly, > can't eat (tho his stomach is growling) etc, etc....One day he took > medication and didn't know what he took, he came into the room with white > powder residue on his mouth, I had to induce vomiting. I am awaiting a call > back from Dr's office,we are not going to continue on ths course of > treatment, he is worst instead of better. When he doesn't take the > treatment he is back to normal eating, coherent, playing with dog, normal BP > etc.. > He flooded bathroom yesterday, as he didn't know how to turn off faucet. > Trying times, the mind is scrambled, unable to turn off this madness. > Phyllis > > > ____________ _________ _________ __ > > From: Jan Holman <janholmangmail (DOT) com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, September 14, 2009 11:40:31 AM > Subject: Re: (unknown) > > Phylllis - I know you asked the question of Diane, but I feel much the same > way. Of course, I never forget that I have it, but it isn't the topmost > thing on my mind. Some of the side effects are on my mind every day, the > lack of energy, having to ration it to do what I want to do including > reading all these emails and the emails from other sources. But, I think > it is the acceptance of my medical problems, finding new ways of doing > things that don't require so much energy, spacing activities, staying as > active as possible. And my faith makes it so much easier to not become > cirrhosis, cad, pad, kidney disease, peripheral neuropathy, hypothyroid > disease, I haven't even bothered to find out what effects hasimotos disease > has on me. I am not my medical problems. I am a child of God with a job to > do here on earth. The most troublesome problem on a daily basis, and > comparitively rather minor, is osteo arthritis. It keeps reminding you with > pain. But when you know God is with you, that is so much more important > than how you might leave this world, or what will happen to you while you > are here. Now when I had an abcessed tooth that really flared up after my > last angioplasty, hurt from the top of my head down the side of my neck, > that was hard to keep out of my mind,[?] but I still continued to do as > much > as possible. Jan H > > On Mon, Sep 14, 2009 at 11:53 AM, Phyllis Delgado <pdelgado354@ yahoo.com > >wrote: > > > wow, you don't let cirrhosis occupy your mind much? Tell me how to > > accomplish that? > > > > > > > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 10:10:30 PM > > Subject: Re: (unknown) > > > > > > Yes, Dave, Hospice care is for the end-of-life and is something you > > shouldn't consider until you have made your decision regarding > > transplant. Give it much thought and consideration, both for yourself and > > your grandson. > > > > None of us knows the number of our days. We walk about every day living > > like we think we will live forever; but the truth is that any of us could > go > > within the next minute. I don't allow the thought that I have cirrhosis > to > > occupy too much of my time. I live my life and try my best to take care > of > > myself. When my time comes, it comes; end of story. I'm not a fatalist, > > just a realist. > > > > I am always here if you need a friend or an ear to listen. I can't hide > my > > faith, but I won't shove it down your throat either. Good luck with the > > call to your doctor tomorrow! > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:57:15 PM > > Subject: Re: (unknown) > > > > > > Diane, thanks for the moral support, and for praying for me. I guess you > > could say, Lord knows I need it. What you were saying about my grandson > is > > very true. His Grandmother, my X, is very sick also. He could easily lose > > out on knowing either of us well. He just turned two. My circumstances > are > > so much better than some that it annoys me I get on so much self-pity. I > > could, when time comes, look into hospice. I think hospice is for the > last > > 6 months. I may be wrong, though. I don't know how far away I am from > > needing a transplant yet. Several doc's gave me 5 yrs. a little less than > 4 > > yrs. ago. My liver doc would not give me a length, saying he does nor > > forecast the future. I appreciated him for that answer, and the others > for > > their honesty. As they say be careful what you ask. I kind of wish now, > > when I asked, the other's would not have told me. I am sure they were > going > > by percentage's giving my symptoms. If they > > were correct I am about 16 months away. As I have often thought, since > > their prediction, very few really know how long they have or how they > will > > go. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:23:35 PM > > Subject: Re: (unknown) > > > > > > Dave, you have in no way offended me. To say that have faith, without > > question, is certainly far from reality. I have come to a place in my > life > > where I rarely allow myself to question God; that has not always been so. > I > > struggled with my faith for many, many years through some terribly > difficult > > circumstances. I hope I won't offend you by saying I will pray for you > and > > ask you not to give up on God. He hasn't given up on you. > > > > That being said, I do honestly care about you and about what you are > going > > through. Cirrhosis is hard, just plain HARD. Every day is a journey into > > the unknown and leads us down paths we never dreamed we would have to > walk. > > Uncertainly and depression are familiar friends. I do so hope your doctor > > can help you with the edema. BTW, I just wanted to add that you should > give > > serious consideration to that transplant. Whether you do it or not, give > it > > every chance when deciding. You have a beautiful grandson who would so > > desperately miss his Grandpa, and I'd be willing to bet your daughter > would > > sure miss you too! Sometimes, bad things happen to good people so they > can > > reacess their lives and make fresh starts. > > > > I'm praying for you Dave! > > > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 6:13:15 PM > > Subject: Re: (unknown) > > > > > > Diane, this is one of my biggest problems. I do not have a strong belief > > in the here after, religion, etc. I do not want to offend those that do. > I > > wish I did, but I don't. I see how much it helps people, but I have not > > been able to grasp the concept. I come from a family that both parents > were > > strong believers and they took me to church regularly. I don't know why I > > have had such a hard time with faith. I am not of the belief that the > world > > happened in a vacuum. There is a degree of spirituality in me. I'm sure > > you don't want me to go into the usual talk of why bad things happen to > good > > people and good things happen to bad people. I just am unable to square > the > > suffering people endure with the idea of God having his hand on the > > throttle, so to speak. I hope I have not offended you or anyone. I admire > > your ability to believe without question. I know there is a force of good > > in the universe, and certainly a evil in the > > universe. I know it would help me if I had your faith, but it avoids me > or > > I avoid it. Whichever way it is, the outcome for me is the same, lack of > > faith for which I, in the end, pay the price. > > Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:28:49 PM > > Subject: Re: (unknown) > > > > > > Hi Dave, > > > > No, Terry opted not to try for a transplant. He had been at death's door > a > > couple of times prior to even knowing about his liver disease. He felt > much > > more peaceful about death than dealing with life after a transplant. > Also, > > he had a genetic disorder that predisposed him to liver disease. He > thought > > it would be selfish of him to ask for a donor liver, knowing his body > would > > begin attacking it as soon as it was transplanted, when so few are > > available. It was so hard to sit by and watch him make that decision, but > I > > had watched Momma die of renal failure and had seen all she had gone > through > > with the dialysis and didn't want to emotionally force anything on Terry > > that he wasn't ready to deal with. I told him I would support him fully > in > > whatever decision he made; if he chose to go for the transplant, I would > be > > there every step of the way but if not, I would also help him live his > life > > to the fullest until the time came for him to go home > > with the Lord. As hard as it was to give him up, I did so knowing I had > > done for him what his heart desired and loved him completely until Jesus > > came for him. > > > > Now that I have cirrhosis as well, I am much in the same boat as > > you. Terry and I had three children who never made it to this world. I > > have two sisters and a niece and four nephews who love me dearly. > However, > > I am not comfortable asking them to take on the role of my caregiver as > this > > disease progresses. I know how hard that is on the loved one and I don't > > want them to have to go through that. I have already started checking in > to > > in-patient hospice care for when that time comes. Whether I will consider > a > > transplant or not is something I haven't really even thought about yet. I > > pray about it and just ask the Lord to help me make the right decision > when > > the time comes. > > > > Whatever decision you make, please know that I am praying for you. I do > > not look forward to dealing with this disease, but I also don't allow > myself > > to worry about it. I simply leave it with the Lord and know He already > has > > a plan and all I have to do is submit myself to His will and plan for my > > life. My faith carries me through this, just as it has through so many > > other areas of my life. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 5:05:45 PM > > Subject: Re: (unknown) > > > > > > Thanks for writing back Diane..And I am sorry you had to go through this > > with your husband...I know from dealing with close friends and family how > > difficult a progressive fatal disease is on the caregiver and others > > close..if I may ask, did your husband have a transplant? I am wrestling > > with that decision when it comes, and whether to put myself and family > > through that. I don't really have someone I can move in with during the > > recovery process, and would not put that burden on my daughter and her > > significant other. For one there is not room in her house, except a > > finished basement, and I don't see how someone could negotiate the stairs > in > > that condition. For another reason her relationship is fragile I believe, > > and that would certainly not help, and though we are civil, we really > don't > > care a lot for each other. I know some go into medical centers to > > recuperate and I'm fine with that option, since likely the progression > > either way will put > > me into one, but I still have a lot of soul searching to do about a > > transplant. Dave > > > > ____________ _________ _________ __ > > From: diane chandler <dianechandler@ att.net> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 4:42:49 PM > > Subject: Re: (unknown) > > > > > > Dave, I am so sorry. Dealing with this disease wears so quickly on your > > nerves and makes you so sad, so often. Please know I am praying for you. > > Do make that call to your doctor tomorrow morning, especially since this > is > > your first experience with the swelling in your extremities. Terry, my > late > > husband, used to swell so badly in his feet that he couldn't walk because > > his feet would actually be rounded on the bottom and wouldn't flaten out, > > even when he was fully weight-bearing. I cannot say I know what you are > > going through from my personal experience, but I do know from having been > > with Terry as he went through it. It is agonizing for you and for those > who > > love you. Again, I am so sorry that this has infringed upon your weekend > > with your daughter and grandson. Please update us after you speak with > your > > doctor. My prayers are with you. > > > > Warm Hugs........ ... > > > > Di > > http://auntdisexper imentallife. blogspot. com/ > > > > ____________ _________ _________ __ > > From: dave dodds <daveliltoe@ yahoo. com> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Sunday, September 13, 2009 11:59:08 AM > > Subject: (unknown) > > > > > > I'm sorry I only seem to come here when things are bad, but seems they > are > > mostly that way now...what has always been a great weekend when my > daughter > > and grandson come up was full of agony for most of my visit...my legs, > feet, > > and ankles swelled up so bad I could hardly walk, and my feet hurt very > > bad...finally this noon the swelling has mostly gone down..but I wonder > for > > how long? I should call my doc tomorrow, but I get weary of doc's...this > is > > a first in my journey of my feet and ankles swelling like this...I > thought > > the ascites was bad, but that is more horrific..walking is terrible and > just > > laying with my feet up to try and make the pain go away...and knowing > things > > will, only progress into being worse... > > Dave > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.