Guest guest Report post Posted April 23, 2006 Welcome in Ohio and wife! It amazes me how many new people keep coming to join us...and how many people who have had their lives touched in a positive way by Steve's story. .I love it! Jane Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 23, 2006 Hi, I've been lurking for the last 2 weeks, and am just now getting around to introducing myself. I'm . My wife & I live & work the Canton, OH area. Between my wife's motivation, and following Steve's travels, I decided that this was the year I was going to drop the extra pounds, and. I had about 50 pounds to lose (40 now). My wife has been going to the gym, and bringing me along for motivation, although I'm not sure who's motivating who. :-) . I'd like to get to my target weight, then keep it off by running/walking regularly. My initial goal is to run a 5K (not sure when). After that, we'll see. I've not followed all the threads on this list, but I scan through as many posts as I have time for. I just took time tonight to enter my steps on the AOM site, then joined Move mates, so my miles could be added to the total. I discovered Steve's journey about 6 weeks ago, I think from a local newspaper story. Way to go Steve! in Ohio Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 24, 2006 welcome, it sounds as if you and your wife are doing great. my neighbor comes over and gets me and 'forces' me to go, it's very good for me. laurie my favorite links www.thefatmanwalking.com http://health.groups.yahoo.com/group/thefatmanwalking_group http://health.groups.yahoo.com/group/Peoplewalkingandtalking http://goliath.mail2web.com/Journals/ > > Hi, > > I've been lurking for the last 2 weeks, and am just now getting around > to introducing myself. I'm . > My wife & I live & work the Canton, OH area. Between my wife's > motivation, and following Steve's travels, I decided that this was the > year I was going to drop the extra pounds, and. I had about 50 pounds to > lose (40 now). > My wife has been going to the gym, and bringing me along for motivation, > although I'm not sure who's motivating who. :-) . > I'd like to get to my target weight, then keep it off by running/walking > regularly. My initial goal is to run a 5K (not sure when). After that, > we'll see. > I've not followed all the threads on this list, but I scan through as > many posts as I have time for. I just took time tonight to enter my > steps on the AOM site, then joined Move mates, so my miles could be > added to the total. > I discovered Steve's journey about 6 weeks ago, I think from a local > newspaper story. Way to go Steve! > > in Ohio > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 Thank you for the support. I was wondering if you had fear and anxiety about your mother dying before she actually passed away? I have terrible fear and anxiety about it. Some times it can be so bad that I will have a panic attack. She has had a UTI for the past couple of days. She is now on antibiotic for it. We had a long night. She started to get encephalopathy. She was on the toilet for an hour. I finally went in there and she had poop all over her, the toilet and the rug and she was wiping it up with her sock. I put her in the shower and cleaned up. I gave her some clothes and came back 20 minutes later. She had her top undergarmet on like underwear and her diaper over it. She had her bottom garmet on her head with her arms stuck out of the leg holes. I asked her what she was doing and she said " I don't know " . Finally got her to bed and got back up at 4am and cleaned up another poop mess. We are going in today to have her levels tested. I kept thinking last night, who signed me up for this job. It is very hard to watch my mother who is 59 go through this. The doctors can't even give us a reason that she has Cirrhosis. She has never drank, never had hepatitis and is not obese. I do not understand. Thanks for being willing to listen. It is kind of strange talking to a complete stranger. > > > > Hi to everyone, my name is Kurt and I am the primary care giver for > > my wife who was told she has non-alcoholic cirrhosis of the liver. > > According to her doctors she is in stage 4. > > This was found out after being treated for continued pain after an > > operation. > > I also lost a sister in March of this year from liver cancer. > > > > I was asked by my wife how I am handling all the stress of taking > > care of her, my sister passing away, and helping another sister who > > son passed away a year ago, and having some problems. She asked who > > do I talk to about my concerns and feelings. Thinking to myself I > > have never really sat down and talked to anyone yet, but I would > > like to know how other care givers handle their stress, who do they > > talk to etc. > > > > Oh what is bad(possible good), my wife is/was a hospice nurse, so I > > know the doctors can bs her. > > > > Anyway sorry to ramble on, and thanks for letting me join. > > > > > > Kurt > > > I am so sorry to hear about your wife. My mother was just diagnosed > with Cirrhosis of the liver in feb. 2008. She has been in and out of > the emergency room 7 times in 3 months. She is also in the later > stages of liver Cirrhosis. She has been living with my husband, > daughter and I for a month. It is very draining to take care of her. I > also need some support. I think I need to get some hospice care. I was > just wondering if your wife is bed ridden. My mother is not yet. Well > keep smiling the best you can. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 Hi Stefanie, I am sorry that your mom is so ill. I read your first few posts and I want to welcome you to the group. This group has a lot of knowledge, experience and support to offer you. I was going to reply to your first post and ask what the doctors diagnosed but you answered it with the reply to Pamela. So, since the doctors do not know the cause of the cirrhosis has she been evaluated for a transplant? Based on your input and observations, if she hasn't she should be immediately evaluated. (in my opinion) but I'm not a doctor. By the way, a normal general physician can recommend or refer the patient for evaluation but they do not determine who gets a transplant. Only a transplant team at an official UNOS transplant center can make that decision. Do not ever let a lay person or doctor tell you that she is not a candidate. Let a transplant center make that decision. I lost my wife to cirrhosis and no one brought up transplant until a year too late. So I try to advocate the necessity of early evaluation. What you are going through is very challenging. But, be your Mom's advocate. You will have to learn to speak up on her behalf. Read about this disease because knowledge is power. Especially with doctors. Which leads me to a tough question. Does your mom have a medical power of attorney? You will need this to make important decisions when she is mentally impaired. Which she is with hepatic encephalopathy. This isn't something that comes and goes. The symptoms of it may be slight or exaggerated, but it is continuous and is a major complication of cirrhosis. I will post more about this complication in a later post. I wish and hope the best for your mother and you. MaC stefanieputnam wrote: Thank you for the support. I was wondering if you had fear and anxiety about your mother dying before she actually passed away? I have terrible fear and anxiety about it. Some times it can be so bad that I will have a panic attack. She has had a UTI for the past couple of days. She is now on antibiotic for it. We had a long night. She started to get encephalopathy. She was on the toilet for an hour. I finally went in there and she had poop all over her, the toilet and the rug and she was wiping it up with her sock. I put her in the shower and cleaned up. I gave her some clothes and came back 20 minutes later. She had her top undergarmet on like underwear and her diaper over it. She had her bottom garmet on her head with her arms stuck out of the leg holes. I asked her what she was doing and she said " I don't know " . Finally got her to bed and got back up at 4am and cleaned up another poop mess. We are going in today to have her levels tested. I kept thinking last night, who signed me up for this job. It is very hard to watch my mother who is 59 go through this. The doctors can't even give us a reason that she has Cirrhosis. She has never drank, never had hepatitis and is not obese. I do not understand. Thanks for being willing to listen. It is kind of strange talking to a complete stranger. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 Stefanie, Your poor mom, I just want to give you and her a hug. I hope the doc gives you some leeway on the lactulose. Mom's doc said 15-30 ml 1-4 times a day as needed. So I would give it to her until she got diarrhea then back off a bit, lower the dose for the rest of the day with the knowledge that if she got confused again I could up the dose. If you have to wait to get permission every time she acts strange/confused it seems like that isn't providing her with the appropriate amount of comfort when she needs it. I would ask for a " range " dose, so you can give as needed. Can you just call, or do you have to take her in? My mom had non alcoholic cirrhosis, she took Rheumatoid Arthritis medicines for the last 8 yrs, was not told how to avoid cirrhosis. And the final straw, she fell, broke her back, had a spinal fusion/lamenectomy which was a traumatic surgery and resulted in her going into DIC which could've been caused by the cirrhosis. The liver can be damaged in a lot of different ways. Yes I was anxious, so much unknown. I think knowledge, research, taking charge, staying busy kept me from crawling out of my skin. Also my faith is strong, I know what the future holds so I don't fear death, but the dying process was unknown to me. What was going to happen day-to-day, how mom's disease would affect her life, would she have a lot of pain, how would I handle it, was I doing all that I could to help her, ....those were thoughts I had. It was very stressful. The home health nurse answered many questions, researching the dying process helped me a lot as well, so I knew as things changed what to expect next. Tough stuff, but I believe we are given grace in the dying process, and grace in grief. We are incredibly strong, we can do so much more than we think. In my weakness He is strong. Stefanie, I can't remember if you mentioned this in your first post, did your mom get evaluated for a liver transplant? We know what you are going through, you aren't alone. Hang in there! Let us know how it goes with the doc. Pamela Re: Hello Thank you for the support. I was wondering if you had fear and anxiety about your mother dying before she actually passed away? I have terrible fear and anxiety about it. Some times it can be so bad that I will have a panic attack. She has had a UTI for the past couple of days. She is now on antibiotic for it. We had a long night. She started to get encephalopathy. She was on the toilet for an hour. I finally went in there and she had poop all over her, the toilet and the rug and she was wiping it up with her sock. I put her in the shower and cleaned up. I gave her some clothes and came back 20 minutes later. She had her top undergarmet on like underwear and her diaper over it. She had her bottom garmet on her head with her arms stuck out of the leg holes. I asked her what she was doing and she said " I don't know " . Finally got her to bed and got back up at 4am and cleaned up another poop mess. We are going in today to have her levels tested. I kept thinking last night, who signed me up for this job. It is very hard to watch my mother who is 59 go through this. The doctors can't even give us a reason that she has Cirrhosis. She has never drank, never had hepatitis and is not obese. I do not understand. Thanks for being willing to listen. It is kind of strange talking to a complete stranger. > > > > Hi to everyone, my name is Kurt and I am the primary care giver for > > my wife who was told she has non-alcoholic cirrhosis of the liver. > > According to her doctors she is in stage 4. > > This was found out after being treated for continued pain after an > > operation. > > I also lost a sister in March of this year from liver cancer. > > > > I was asked by my wife how I am handling all the stress of taking > > care of her, my sister passing away, and helping another sister who > > son passed away a year ago, and having some problems. She asked who > > do I talk to about my concerns and feelings. Thinking to myself I > > have never really sat down and talked to anyone yet, but I would > > like to know how other care givers handle their stress, who do they > > talk to etc. > > > > Oh what is bad(possible good), my wife is/was a hospice nurse, so I > > know the doctors can bs her. > > > > Anyway sorry to ramble on, and thanks for letting me join. > > > > > > Kurt > > > I am so sorry to hear about your wife. My mother was just diagnosed > with Cirrhosis of the liver in feb. 2008. She has been in and out of > the emergency room 7 times in 3 months. She is also in the later > stages of liver Cirrhosis. She has been living with my husband, > daughter and I for a month. It is very draining to take care of her. I > also need some support. I think I need to get some hospice care. I was > just wondering if your wife is bed ridden. My mother is not yet. Well > keep smiling the best you can. > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 Pamela thank you for the support. I really could use a hug, so could my mom. Yes the dosage says 1-4, I usually give her 3. When I don't she gets constipated. Her and I have IBS(irritable bowel syndrome). We both get constipated very often. She actually does well on the 3 to 4 dose. The doctors told us that she was not healthy enough to get a liver transplant. They said it would probably kill her. I really don't know what to do. I worry about her all the time. I worry if I am doing enough for her. I feel very over whelmed. My mother and I have a strong faith, but I still fear her dying. I know I will see her again after that happens, but it is still hard to accept. I know Heavenly Father will take care of her and I. > > > > > > Hi to everyone, my name is Kurt and I am the primary care giver for > > > my wife who was told she has non-alcoholic cirrhosis of the liver. > > > According to her doctors she is in stage 4. > > > This was found out after being treated for continued pain after an > > > operation. > > > I also lost a sister in March of this year from liver cancer. > > > > > > I was asked by my wife how I am handling all the stress of taking > > > care of her, my sister passing away, and helping another sister who > > > son passed away a year ago, and having some problems. She asked who > > > do I talk to about my concerns and feelings. Thinking to myself I > > > have never really sat down and talked to anyone yet, but I would > > > like to know how other care givers handle their stress, who do they > > > talk to etc. > > > > > > Oh what is bad(possible good), my wife is/was a hospice nurse, so I > > > know the doctors can bs her. > > > > > > Anyway sorry to ramble on, and thanks for letting me join. > > > > > > > > > Kurt > > > > > I am so sorry to hear about your wife. My mother was just diagnosed > > with Cirrhosis of the liver in feb. 2008. She has been in and out of > > the emergency room 7 times in 3 months. She is also in the later > > stages of liver Cirrhosis. She has been living with my husband, > > daughter and I for a month. It is very draining to take care of her. I > > also need some support. I think I need to get some hospice care. I was > > just wondering if your wife is bed ridden. My mother is not yet. Well > > keep smiling the best you can. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 - I also have cirrhosis of unknown origin. or rather, not known which of the possible causes it could be. I think it is a combination of them. My family has a history of liver problems, not all the same but they say that doesn't matter, it is all liver. Also, for years I wasn't treated for a thyroid condition and then years later, I was significantly under treated. Just before my bypass surgery in April I finally got a doctor to order the special test to see how much medication is getting to my brain, not how much is in my blood. They doubled my meds again. And for years I have been very over weight. I was also on meds for arthritis which can aggravate the liver. But as my pcp keeps telling me, it really doesn't matter what caused it, I have it and have to deal with it. When I first was diagnosed with it, the quack quack dr. I had at the time kept telling me to quit drinking, told him every time I didn't drink. Problem with pcps and lesser specialists, they think they know more than they do. I believe what the ultimate specialist tells me such as the doctor who does transplants. Jan H On Tue, Jul 29, 2008 at 12:56 PM, stefanieputnam wrote: > Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > Hi to everyone, my name is Kurt and I am the primary care giver for > > > my wife who was told she has non-alcoholic cirrhosis of the liver. > > > According to her doctors she is in stage 4. > > > This was found out after being treated for continued pain after an > > > operation. > > > I also lost a sister in March of this year from liver cancer. > > > > > > I was asked by my wife how I am handling all the stress of taking > > > care of her, my sister passing away, and helping another sister who > > > son passed away a year ago, and having some problems. She asked who > > > do I talk to about my concerns and feelings. Thinking to myself I > > > have never really sat down and talked to anyone yet, but I would > > > like to know how other care givers handle their stress, who do they > > > talk to etc. > > > > > > Oh what is bad(possible good), my wife is/was a hospice nurse, so I > > > know the doctors can bs her. > > > > > > Anyway sorry to ramble on, and thanks for letting me join. > > > > > > > > > Kurt > > > > > I am so sorry to hear about your wife. My mother was just diagnosed > > with Cirrhosis of the liver in feb. 2008. She has been in and out of > > the emergency room 7 times in 3 months. She is also in the later > > stages of liver Cirrhosis. She has been living with my husband, > > daughter and I for a month. It is very draining to take care of her. I > > also need some support. I think I need to get some hospice care. I was > > just wondering if your wife is bed ridden. My mother is not yet. Well > > keep smiling the best you can. > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2008 Thank you. Can I ask what type of doctor you had seen at the University Hospital? University Hospitals are usually learning hospitals. Was the doctor someone from a transplant team? Was she ever sent for an evaluation? For a doctor to just say she won't survive the operation is different than being evaluated by a transplant team. The transplant team take great controls to ensure patient safety. Many patients have been transplanted near death and some while even in a coma. So, it's important that the doctor who said no was the right doctor to say that. Was he even a hepatologist? MaC stefanieputnam wrote: MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 I was at the ER of my University hospital yesterday complaining of an unusual sore throat, with a white cottage cheese like lesion on the back of it. Funny how you say that they ensure patient safety. I was checked for strep, it came back negative, and they sent me on my way. 24 hours later, after having been to an urgent care center (different from an ER, not attached to a hospital) and been diagnosed with thrush, my airway is 50% closed. I am in a panic. If it closes anymore, I will have to have a tube. Those A-holes over there didn't even entertain the possibility of thrush. It can happen as a result of low white cells. Last week my routine bloodwork showed very low absolute monocytes, mine being 179 and normal ranging from 200 to 900. I am pissed, but more than that I am scared to death, becuase I am having a hard time swallowing, and breathing. I see 911 in my future. Re: Re: Hello Thank you. Can I ask what type of doctor you had seen at the University Hospital? University Hospitals are usually learning hospitals. Was the doctor someone from a transplant team? Was she ever sent for an evaluation? For a doctor to just say she won't survive the operation is different than being evaluated by a transplant team. The transplant team take great controls to ensure patient safety. Many patients have been transplanted near death and some while even in a coma. So, it's important that the doctor who said no was the right doctor to say that. Was he even a hepatologist? MaC stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 I was referring to the transplant team when your being evaluated by them. ER is a whole different ball of wax. MaC Bob Aragon wrote: I was at the ER of my University hospital yesterday complaining of an unusual sore throat, with a white cottage cheese like lesion on the back of it. Funny how you say that they ensure patient safety. I was checked for strep, it came back negative, and they sent me on my way. 24 hours later, after having been to an urgent care center (different from an ER, not attached to a hospital) and been diagnosed with thrush, my airway is 50% closed. I am in a panic. If it closes anymore, I will have to have a tube. Those A-holes over there didn't even entertain the possibility of thrush. It can happen as a result of low white cells. Last week my routine bloodwork showed very low absolute monocytes, mine being 179 and normal ranging from 200 to 900. I am pissed, but more than that I am scared to death, becuase I am having a hard time swallowing, and breathing. I see 911 in my future. Re: Re: Hello Thank you. Can I ask what type of doctor you had seen at the University Hospital? University Hospitals are usually learning hospitals. Was the doctor someone from a transplant team? Was she ever sent for an evaluation? For a doctor to just say she won't survive the operation is different than being evaluated by a transplant team. The transplant team take great controls to ensure patient safety. Many patients have been transplanted near death and some while even in a coma. So, it's important that the doctor who said no was the right doctor to say that. Was he even a hepatologist? MaC stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Walking Eagle  My friend up in Alabama that died of cirrhosis/varices kept getting thrush over the years. 3 or 4 times a year he would come down with thrush. Oh Oh, the medical community was convinced it was from his ALD. The would give him some crap called Majic Swish-n Swirl and it would clear up only to return a few monts later.  Come to find out it was being caused by his nasty a** dentures that he would just lay around anywhere. He had the whole medical community certain that it was due to cirrhosis. I am sure the cirrhosis didn't help but it took a dentist to see the problem and correct it. He would lay them down anywhere. Fishing once he laid them on the floor of the boat. You know those ol' boats always had about inch of water in the bottom because the drain plug was about an inch and a half above the bottom and splashing around all day guaranteed a little water in the boat.  As kids Momma always told us that putting change (coins) in our mouth would cause thrush. None of us ever got thrush...we never had any money.  You are right on. These Dr.s can be wrong. Thats why they call it " practicing " medecine.  Good Luck WE  Hope you get to feeling better MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Bob Some women get thrush or what they call a vaginal infection. I had one incident of it, and then after that it would be in my throat. One of the things I was told is that it is common after taking certain antibiotics. They supposedly get rid of something in the system that ordinarily controls what causes thrush so the thrush gets out of control. In my experience, the thrush probably isn't just in the throat or vaginal, but that is where it shows itself. I get very tired, exhausted when I have it, so I think it is all through the body. It is very painful, and you need to do something. I always got a prescription from my doctor, might be similar to what abijann said you could do. Hope you get some relief soon. Jan H On Wed, Jul 30, 2008 at 3:34 AM, Bob Aragon wrote: > I was at the ER of my University hospital yesterday complaining of an > unusual sore throat, with a white cottage cheese like lesion on the back of > it. Funny how you say that they ensure patient safety. I was checked for > strep, it came back negative, and they sent me on my way. 24 hours later, > after having been to an urgent care center (different from an ER, not > attached to a hospital) and been diagnosed with thrush, my airway is 50% > closed. I am in a panic. If it closes anymore, I will have to have a tube. > Those A-holes over there didn't even entertain the possibility of thrush. It > can happen as a result of low white cells. Last week my routine bloodwork > showed very low absolute monocytes, mine being 179 and normal ranging from > 200 to 900. I am pissed, but more than that I am scared to death, becuase I > am having a hard time swallowing, and breathing. I see 911 in my future. > > Re: Re: Hello > > Thank you. > Can I ask what type of doctor you had seen at the University Hospital? > University Hospitals are usually learning hospitals. > Was the doctor someone from a transplant team? Was she ever sent for an > evaluation? For a doctor to just say she won't survive the operation is > different than being evaluated by a transplant team. The transplant team > take great controls to ensure patient safety. Many patients have been > transplanted near death and some while even in a coma. So, it's important > that the doctor who said no was the right doctor to say that. Was he even a > hepatologist? > > MaC > > stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC > Thank you for the information. Sorry to hear about your wife. > When we took my mother to the University of Utah hospital we asked > them if she would be able to get on the list for a liver transplant. > They told us that her health was too poor and she would probably die > faster with a liver transplant than she would if she didn't. She has > high blood pressure, she had her gallbladder taken out 2 years ago. > Her health has been going down hill since 2003. I don't know what to > do. I agree that hepatic encephalopathy is a continuous thing. She has > more severe symptoms when she has a UTI or has sever symptoms of > ascites. Right now I need to find a home health company who will come > more often than the one we have now. They come maybe 20 min. a week. > Thanks again > Stefanie > > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Thank you Jan. I am glad to see you around. I did get exactly what our resident guru (Abijann you amaze me) said, and it seems to be making things better. Thanks Abijann. I'm swishing 4 times a day and at least all the white spots are mostly gone. Now the only problem is that my throat has swelled up in size to twice what it was. This morning I was so close to going in by ambulance, but afraid if I did they would want to intubate me. Does anybody know why my absoloute monocytes could be low? Love, Bobby Re: Re: Hello > > Thank you. > Can I ask what type of doctor you had seen at the University Hospital? > University Hospitals are usually learning hospitals. > Was the doctor someone from a transplant team? Was she ever sent for an > evaluation? For a doctor to just say she won't survive the operation is > different than being evaluated by a transplant team. The transplant team > take great controls to ensure patient safety. Many patients have been > transplanted near death and some while even in a coma. So, it's important > that the doctor who said no was the right doctor to say that. Was he even a > hepatologist? > > MaC > > stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC > Thank you for the information. Sorry to hear about your wife. > When we took my mother to the University of Utah hospital we asked > them if she would be able to get on the list for a liver transplant. > They told us that her health was too poor and she would probably die > faster with a liver transplant than she would if she didn't. She has > high blood pressure, she had her gallbladder taken out 2 years ago. > Her health has been going down hill since 2003. I don't know what to > do. I agree that hepatic encephalopathy is a continuous thing. She has > more severe symptoms when she has a UTI or has sever symptoms of > ascites. Right now I need to find a home health company who will come > more often than the one we have now. They come maybe 20 min. a week. > Thanks again > Stefanie > > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Praying for you Bobby! Love, Pamela Re: Re: Hello > > Thank you. > Can I ask what type of doctor you had seen at the University Hospital? > University Hospitals are usually learning hospitals. > Was the doctor someone from a transplant team? Was she ever sent for an > evaluation? For a doctor to just say she won't survive the operation is > different than being evaluated by a transplant team. The transplant team > take great controls to ensure patient safety. Many patients have been > transplanted near death and some while even in a coma. So, it's important > that the doctor who said no was the right doctor to say that. Was he even a > hepatologist? > > MaC > > stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC > Thank you for the information. Sorry to hear about your wife. > When we took my mother to the University of Utah hospital we asked > them if she would be able to get on the list for a liver transplant. > They told us that her health was too poor and she would probably die > faster with a liver transplant than she would if she didn't. She has > high blood pressure, she had her gallbladder taken out 2 years ago. > Her health has been going down hill since 2003. I don't know what to > do. I agree that hepatic encephalopathy is a continuous thing. She has > more severe symptoms when she has a UTI or has sever symptoms of > ascites. Right now I need to find a home health company who will come > more often than the one we have now. They come maybe 20 min. a week. > Thanks again > Stefanie > > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Thanks Pamela. Sent via BlackBerry from T-Mobile Re: Re: Hello Praying for you Bobby! Love, Pamela Re: Re: Hello > > Thank you. > Can I ask what type of doctor you had seen at the University Hospital? > University Hospitals are usually learning hospitals. > Was the doctor someone from a transplant team? Was she ever sent for an > evaluation? For a doctor to just say she won't survive the operation is > different than being evaluated by a transplant team. The transplant team > take great controls to ensure patient safety. Many patients have been > transplanted near death and some while even in a coma. So, it's important > that the doctor who said no was the right doctor to say that. Was he even a > hepatologist? > > MaC > > stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC > Thank you for the information. Sorry to hear about your wife. > When we took my mother to the University of Utah hospital we asked > them if she would be able to get on the list for a liver transplant. > They told us that her health was too poor and she would probably die > faster with a liver transplant than she would if she didn't. She has > high blood pressure, she had her gallbladder taken out 2 years ago. > Her health has been going down hill since 2003. I don't know what to > do. I agree that hepatic encephalopathy is a continuous thing. She has > more severe symptoms when she has a UTI or has sever symptoms of > ascites. Right now I need to find a home health company who will come > more often than the one we have now. They come maybe 20 min. a week. > Thanks again > Stefanie > > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 I am so sorry you are feeling this way and going through this....I do know a little bit about thrush bc one of my best friends daughters had this for quite sometime.....babies get it sometimes when they are nursing from their mothers and if the mother is taking some sort of antibiotic they pass it to the baby....they did give the baby some sort of medication and it did go away eventually.....Did they give you meds for it? From what I know it will clear up soon......gosh sometimes we give the doctors too much credit I think. MaC Thank you for the information. Sorry to hear about your wife. When we took my mother to the University of Utah hospital we asked them if she would be able to get on the list for a liver transplant. They told us that her health was too poor and she would probably die faster with a liver transplant than she would if she didn't. She has high blood pressure, she had her gallbladder taken out 2 years ago. Her health has been going down hill since 2003. I don't know what to do. I agree that hepatic encephalopathy is a continuous thing. She has more severe symptoms when she has a UTI or has sever symptoms of ascites. Right now I need to find a home health company who will come more often than the one we have now. They come maybe 20 min. a week. Thanks again Stefanie Thank you for the support. I was wondering if you had fear and anxiety > about your mother dying before she actually passed away? I have > terrible fear and anxiety about it. Some times it can be so bad that I > will have a panic attack. She has had a UTI for the past couple of > days. She is now on antibiotic for it. We had a long night. She > started to get encephalopathy. She was on the toilet for an hour. I > finally went in there and she had poop all over her, the toilet and > the rug and she was wiping it up with her sock. I put her in the > shower and cleaned up. I gave her some clothes and came back 20 > minutes later. She had her top undergarmet on like underwear and her > diaper over it. She had her bottom garmet on her head with her arms > stuck out of the leg holes. I asked her what she was doing and she > said " I don't know " . Finally got her to bed and got back up at 4am and > cleaned up another poop mess. We are going in today to have her levels > tested. I kept thinking last night, who signed me up for this job. It > is very hard to watch my mother who is 59 go through this. The doctors > can't even give us a reason that she has Cirrhosis. She has never > drank, never had hepatitis and is not obese. I do not understand. > Thanks for being willing to listen. It is kind of strange talking to a > complete stranger. > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Walking Eagle,  Some people get thrush after a long battery of antibiotics. It has happened to me twice. As an adult, although thrush is possible at any age one mostly hears about it in children. I never had it to the extent you describe with the throat swelling for me it was mostly just white blisters on the roof of my mouth. I can sympathize  with you when one has thrush they feel horrible. That Majic Swish and Swirl should take care of it. If it where me I would go have that throat swelling checked out again. Better safe than sorry.  The other time I came down with a horrifying case of thrush was years back when I was hitting the Vodka and Pineapple Juice hot and heavy. That was miserable. I " figured " (?) it was either the juice or the vodka/or a combination of both that was killing the good germs we have in our bodies. That was Little Eagle's diagnosis a not from a medical professional. It was more of an assumption on my part. I can see why liver damage could contribute to it. At the time I had no idea I had liver damage. Pineapple Juice is good for a person but 30 glasses a day half full of vodka can't be, know what I mean?  Godspeed on feeling better. MaC > Thank you for the information. Sorry to hear about your wife. > When we took my mother to the University of Utah hospital we asked > them if she would be able to get on the list for a liver transplant. > They told us that her health was too poor and she would probably die > faster with a liver transplant than she would if she didn't. She has > high blood pressure, she had her gallbladder taken out 2 years ago. > Her health has been going down hill since 2003. I don't know what to > do. I agree that hepatic encephalopathy is a continuous thing. She has > more severe symptoms when she has a UTI or has sever symptoms of > ascites. Right now I need to find a home health company who will come > more often than the one we have now. They come maybe 20 min. a week. > Thanks again > Stefanie > > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Bobby - glad to be around. I seem to be getting some energy back after my triple bypass three months ago. But having trouble with severe arthritis in the lumbar area. Supposed to be taking meds to help, but my insurance denies them. Hoping the request can be put differently so they will approve it. Also, my grandson came to stay after my surgery as I wasn't supposed to be alone. He decided to stay, got a job, and I have to make the most of his work schedule to get on my computer. I keep telling him it is my computer so I should have first chance at using it, but he gets invovled in long online games. Glad to hear you are getting some relief. Hopefully, it will continue to increase in the next few days. Sorry, I know nothing about absolute monocytes J an H On Wed, Jul 30, 2008 at 10:51 AM, Bob Aragon wrote: > Thank you Jan. I am glad to see you around. I did get exactly what our > resident guru (Abijann you amaze me) said, and it seems to be making things > better. Thanks Abijann. I'm swishing 4 times a day and at least all the > white spots are mostly gone. Now the only problem is that my throat has > swelled up in size to twice what it was. This morning I was so close to > going in by ambulance, but afraid if I did they would want to intubate me. > Does anybody know why my absoloute monocytes could be low? Love, Bobby > > Re: Re: Hello > > > > Thank you. > > Can I ask what type of doctor you had seen at the University Hospital? > > University Hospitals are usually learning hospitals. > > Was the doctor someone from a transplant team? Was she ever sent for an > > evaluation? For a doctor to just say she won't survive the operation is > > different than being evaluated by a transplant team. The transplant team > > take great controls to ensure patient safety. Many patients have been > > transplanted near death and some while even in a coma. So, it's important > > that the doctor who said no was the right doctor to say that. Was he even > a > > hepatologist? > > > > MaC > > > > stefanieputnam <stefanieputnam@ yahoo.com> wrote: MaC > > Thank you for the information. Sorry to hear about your wife. > > When we took my mother to the University of Utah hospital we asked > > them if she would be able to get on the list for a liver transplant. > > They told us that her health was too poor and she would probably die > > faster with a liver transplant than she would if she didn't. She has > > high blood pressure, she had her gallbladder taken out 2 years ago. > > Her health has been going down hill since 2003. I don't know what to > > do. I agree that hepatic encephalopathy is a continuous thing. She has > > more severe symptoms when she has a UTI or has sever symptoms of > > ascites. Right now I need to find a home health company who will come > > more often than the one we have now. They come maybe 20 min. a week. > > Thanks again > > Stefanie > > > > Thank you for the support. I was wondering if you had fear and anxiety > > > about your mother dying before she actually passed away? I have > > > terrible fear and anxiety about it. Some times it can be so bad that I > > > will have a panic attack. She has had a UTI for the past couple of > > > days. She is now on antibiotic for it. We had a long night. She > > > started to get encephalopathy. She was on the toilet for an hour. I > > > finally went in there and she had poop all over her, the toilet and > > > the rug and she was wiping it up with her sock. I put her in the > > > shower and cleaned up. I gave her some clothes and came back 20 > > > minutes later. She had her top undergarmet on like underwear and her > > > diaper over it. She had her bottom garmet on her head with her arms > > > stuck out of the leg holes. I asked her what she was doing and she > > > said " I don't know " . Finally got her to bed and got back up at 4am and > > > cleaned up another poop mess. We are going in today to have her levels > > > tested. I kept thinking last night, who signed me up for this job. It > > > is very hard to watch my mother who is 59 go through this. The doctors > > > can't even give us a reason that she has Cirrhosis. She has never > > > drank, never had hepatitis and is not obese. I do not understand. > > > Thanks for being willing to listen. It is kind of strange talking to a > > > complete stranger. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Jan Sorry to hear you have Cirrhosis. Ya some doctors don't know much at all. When some of the symptoms of my mom's liver disease started manifesting themselves, the Dr. kept telling us that she had Bipolar. We had no clue. They put her on depression meds. and antiphsychotics, some times 10 different ones at a time. None of them helped only made her skinny and lethargic. It wasn't until feb. 2008 that they did a liver biopsy and found out that she had advanced Cirrhosis. I don't have much faith in Doctors. > > > > > > > > Hi to everyone, my name is Kurt and I am the primary care giver for > > > > my wife who was told she has non-alcoholic cirrhosis of the liver. > > > > According to her doctors she is in stage 4. > > > > This was found out after being treated for continued pain after an > > > > operation. > > > > I also lost a sister in March of this year from liver cancer. > > > > > > > > I was asked by my wife how I am handling all the stress of taking > > > > care of her, my sister passing away, and helping another sister who > > > > son passed away a year ago, and having some problems. She asked who > > > > do I talk to about my concerns and feelings. Thinking to myself I > > > > have never really sat down and talked to anyone yet, but I would > > > > like to know how other care givers handle their stress, who do they > > > > talk to etc. > > > > > > > > Oh what is bad(possible good), my wife is/was a hospice nurse, so I > > > > know the doctors can bs her. > > > > > > > > Anyway sorry to ramble on, and thanks for letting me join. > > > > > > > > > > > > Kurt > > > > > > > I am so sorry to hear about your wife. My mother was just diagnosed > > > with Cirrhosis of the liver in feb. 2008. She has been in and out of > > > the emergency room 7 times in 3 months. She is also in the later > > > stages of liver Cirrhosis. She has been living with my husband, > > > daughter and I for a month. It is very draining to take care of her. I > > > also need some support. I think I need to get some hospice care. I was > > > just wondering if your wife is bed ridden. My mother is not yet. Well > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 30, 2008 Mac I believe they were just regular doctors. Who would I need to contact in order to see if she would qualify? A liver specialist maybe? I live in Southern Utah and we don't even have a hepatologist in this town. Salt lake City Utah is only 5 to 6 hours away, we could take her there. The University of Utah Hospital, where we took her, is in Salt Lake City. It is suppose to be one of the best hospitals in the USA. I don't know where to go from here. > Thank you for the support. I was wondering if you had fear and anxiety > > about your mother dying before she actually passed away? I have > > terrible fear and anxiety about it. Some times it can be so bad that I > > will have a panic attack. She has had a UTI for the past couple of > > days. She is now on antibiotic for it. We had a long night. She > > started to get encephalopathy. She was on the toilet for an hour. I > > finally went in there and she had poop all over her, the toilet and > > the rug and she was wiping it up with her sock. I put her in the > > shower and cleaned up. I gave her some clothes and came back 20 > > minutes later. She had her top undergarmet on like underwear and her > > diaper over it. She had her bottom garmet on her head with her arms > > stuck out of the leg holes. I asked her what she was doing and she > > said " I don't know " . Finally got her to bed and got back up at 4am and > > cleaned up another poop mess. We are going in today to have her levels > > tested. I kept thinking last night, who signed me up for this job. It > > is very hard to watch my mother who is 59 go through this. The doctors > > can't even give us a reason that she has Cirrhosis. She has never > > drank, never had hepatitis and is not obese. I do not understand. > > Thanks for being willing to listen. It is kind of strange talking to a > > complete stranger. > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 4, 2008 I don't understand why it took so long to diagnose. St. Utah is such a small town with few doctors. Some of the ones we have see so many elderly patients that you end up being just a number to them. My moms Gastro. Doc. acts that way and there is not another one we can go to in this town. I believe he just didn't really care what was wrong with my mom. One time we went to an appointment with my mom and he started talking about her having diabetes and all this other information. Well my mom does not have diabetes, he was talking about another patient. Unbelievable to say the least. My mom had her gallbladder taken out 2 years ago. When we got all her hospital records a couple months ago, it says that he saw severe scarring on the liver when he did the surgery. They never gave that information to us or my mother back then. I would think that was malpractice. > > > > > > > > > > > > > > Hi to everyone, my name is Kurt and I am the > primary care > > > giver for > > > > > > > my wife who was told she has non-alcoholic > cirrhosis of > the liver. > > > > > > > According to her doctors she is in stage 4. > > > > > > > This was found out after being treated for > continued pain > after an > > > > > > > operation. > > > > > > > I also lost a sister in March of this year from > liver cancer. > > > > > > > > > > > > > > I was asked by my wife how I am handling all the > stress of > taking > > > > > > > care of her, my sister passing away, and helping > another > > > sister who > > > > > > > son passed away a year ago, and having some > problems. She > > > asked who > > > > > > > do I talk to about my concerns and feelings. > Thinking to > myself I > > > > > > > have never really sat down and talked to anyone > yet, but I > would > > > > > > > like to know how other care givers handle their > stress, who do > > > they > > > > > > > talk to etc. > > > > > > > > > > > > > > Oh what is bad(possible good), my wife is/was a > hospice nurse, > > > so I > > > > > > > know the doctors can bs her. > > > > > > > > > > > > > > Anyway sorry to ramble on, and thanks for letting > me join. > > > > > > > > > > > > > > > > > > > > > Kurt > > > > > > > > > > > > > I am so sorry to hear about your wife. My mother was > just > diagnosed > > > > > > with Cirrhosis of the liver in feb. 2008. She has been > in > and out of > > > > > > the emergency room 7 times in 3 months. She is also in > the later > > > > > > stages of liver Cirrhosis. She has been living with my > husband, > > > > > > daughter and I for a month. It is very draining to > take care of > > > her. I > > > > > > also need some support. I think I need to get some > hospice care. > > > I was > > > > > > just wondering if your wife is bed ridden. My mother > is not yet. > > > Well > > > > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 4, 2008 Mac, Thank you for the information > > Thank you for the support. I was wondering if you had fear and > anxiety > > > about your mother dying before she actually passed away? I have > > > terrible fear and anxiety about it. Some times it can be so bad > that I > > > will have a panic attack. She has had a UTI for the past couple of > > > days. She is now on antibiotic for it. We had a long night. She > > > started to get encephalopathy. She was on the toilet for an hour. I > > > finally went in there and she had poop all over her, the toilet and > > > the rug and she was wiping it up with her sock. I put her in the > > > shower and cleaned up. I gave her some clothes and came back 20 > > > minutes later. She had her top undergarmet on like underwear and her > > > diaper over it. She had her bottom garmet on her head with her arms > > > stuck out of the leg holes. I asked her what she was doing and she > > > said " I don't know " . Finally got her to bed and got back up at > 4am and > > > cleaned up another poop mess. We are going in today to have her > levels > > > tested. I kept thinking last night, who signed me up for this > job. It > > > is very hard to watch my mother who is 59 go through this. The > doctors > > > can't even give us a reason that she has Cirrhosis. She has never > > > drank, never had hepatitis and is not obese. I do not understand. > > > Thanks for being willing to listen. It is kind of strange > talking to a > > > complete stranger. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 4, 2008 Stefani - My 'doctor' (using 'doctor' instead of doctor because he wasn't very good, we called him quack, quack) was told about a couple of conditions I had by specialists he sent me to. He never told me, but claimed he had because he put it in my chart. I think when you live in a small town, the best doctor you can get for your general care is one who will refer you to a specialist when something systemic seems to be a problem. When I had my gall bladder taken out about 18 months ago, my surgeon also did a biopsy on my liver because he was aware of my cirrhosis. He told me about it saying that he thought I would prefer to have him do it then, know how much it had changed since my original one, and not have to go through the procedure to have it done from the outside. I really appreciated that. Then he sent the results to my gastro and hemotologist for them to interpret since that is really more their field than his. This is a doctor I like. one who makes me feel I am being cared for medically. Since you live in St. which is even a smaller population than we are staffed for, I am not surprised it would take a doctor there to diagnose a serious illness. My quack, quack, did the same thing with diabetes with me as your mother's doctor did. When it became obvious what he was talking about, I told him I didn't have diabetes, and he looked at my chart to find out that I didn't have it. Even my doctors when I had the bypass thought I had copd, never had it diagnosed, never told I had it, but they started treating me for it. I had asthma induced by medication they gave me after I had told them it induced asthma in me. grrrrrrrrrrr. You mention that most of the patients your doctors see are elderly. I think doctors are influenced in their diagnosis by the patients they see. If they see elderly people, they expect certain things. I have been told too that I am getting older and should expect to be bothered by certain things. But, I am 10 to 20 years younger than most of their patients. Granted most of the people around here are in better physical shape than I am even though they are actually older. Sorry for rambling, still have some mental disorientation left from the surgery I guess hahahahaha Jan H On Mon, Aug 4, 2008 at 7:57 AM, stefanieputnam wrote: > I don't understand why it took so long to diagnose. St. Utah is > such a small town with few doctors. Some of the ones we have see so > many elderly patients that you end up being just a number to them. My > moms Gastro. Doc. acts that way and there is not another one we can go > to in this town. I believe he just didn't really care what was wrong > with my mom. One time we went to an appointment with my mom and he > started talking about her having diabetes and all this other > information. Well my mom does not have diabetes, he was talking about > another patient. Unbelievable to say the least. My mom had her > gallbladder taken out 2 years ago. When we got all her hospital > records a couple months ago, it says that he saw severe scarring on > the liver when he did the surgery. They never gave that information to > us or my mother back then. I would think that was malpractice. > > > > > > > > > > > > > > > > > Hi to everyone, my name is Kurt and I am the > > primary care > > > > giver for > > > > > > > > my wife who was told she has non-alcoholic > > cirrhosis of > > the liver. > > > > > > > > According to her doctors she is in stage 4. > > > > > > > > This was found out after being treated for > > continued pain > > after an > > > > > > > > operation. > > > > > > > > I also lost a sister in March of this year from > > liver cancer. > > > > > > > > > > > > > > > > I was asked by my wife how I am handling all the > > stress of > > taking > > > > > > > > care of her, my sister passing away, and helping > > another > > > > sister who > > > > > > > > son passed away a year ago, and having some > > problems. She > > > > asked who > > > > > > > > do I talk to about my concerns and feelings. > > Thinking to > > myself I > > > > > > > > have never really sat down and talked to anyone > > yet, but I > > would > > > > > > > > like to know how other care givers handle their > > stress, who do > > > > they > > > > > > > > talk to etc. > > > > > > > > > > > > > > > > Oh what is bad(possible good), my wife is/was a > > hospice nurse, > > > > so I > > > > > > > > know the doctors can bs her. > > > > > > > > > > > > > > > > Anyway sorry to ramble on, and thanks for letting > > me join. > > > > > > > > > > > > > > > > > > > > > > > > Kurt > > > > > > > > > > > > > > > I am so sorry to hear about your wife. My mother was > > just > > diagnosed > > > > > > > with Cirrhosis of the liver in feb. 2008. She has been > > in > > and out of > > > > > > > the emergency room 7 times in 3 months. She is also in > > the later > > > > > > > stages of liver Cirrhosis. She has been living with my > > husband, > > > > > > > daughter and I for a month. It is very draining to > > take care of > > > > her. I > > > > > > > also need some support. I think I need to get some > > hospice care. > > > > I was > > > > > > > just wondering if your wife is bed ridden. My mother > > is not yet. > > > > Well > > > > > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites