Guest guest Posted January 27, 2012 Report Share Posted January 27, 2012 Very interesting!! More so I think, because my brain fog won't allow the entire concept to filter through. So I kept wondering what Hawkins would say. ________________________________  Dear Roni, I am sorry about you going through all that.   It is just insane the chaos which can come from ignorance. I expect things to get much worse before they get better, and then everything will suddenly change--when the singularity happens,-- we will be given nano robots through an IV and they will clean up liver fibrosis, restore normal portal pressure, correct genetic defects causing autoimmune hepatitis, and so on an so forth. If any one does not know what the singularity is here is a link. Do not go there is you frighten easily. The concept is not for the faint of heart Love, Bobby http://en.wikipedia.org/wiki/Technological_singularity  ________________________________ To: livercirrhosissupport Sent: Thursday, January 26, 2012 10:09 AM Subject: Re: Bad News Bonnie, Does he take Lactulose for the cirrhosis? It's the medication that keeps ammonia down by making you go to bathroom alot. This keeps me from getting constipated from the morphine. Detoxing from morphine is basically detoxing from heroine. It's a horrible thing to go through. It's also dangerous and should be done under a doctor. Sadly, my ex-pharmacist has sent me into detox once and my doctor. I learned I had to find something in case this happens again. Once my pharmacist refused to give me medication even after doctor called it in and another time my pain doctor denied my refill because I had gotten my days mixed up and was a day late for an appointment when the doctor wasn't there. They didn't bother to inform me of this until I called for refill. All of you that have great doctors, you are very lucky. Maybe when he is jerking......he is due for another dose? I'm not a doctor but it wouldn't surprise me if the morphine is causing that particular symptom. Wish you both the best. Roni > I think maybe the jerking is from the morphine but instead of > running out like you did he may be getting too much. I mentioned > that to the dr but she didn' t seem to say much and never changed > the amount. And of course he wants it!! And doesn't want to cut it > down. > With the 60 mg 2 times a day of the slow acting and then popping the > fast acting 15mg when needed he's getting alot in his body. He will > be sitting and all of a sudden his arms fly out with no control. one > day I was driving him back from the Dr and he had been sitting > sleeping and all of a sudden his arms started to fly and his legs > were kicking and i was afraid i was in arms length to get hit as > wild as he was . i hollered at him to wake him up and said whats > wrong and then he kind of woke up and said--what was that? did you > see that?==so i think he was trying to hit and kick at something he > saw in his mind. It was pretty wild for alittle bit. Thought I was > going to have to stop until he settled down. He gets so constipated > from the morphine so takes alot of milk of magnesia. Maybe then > when you got off of it for a time like that it reversed and gave you > the diarrhea so bad instead. Dr told him he would be on the morphine > for the rest of his > life. That has got to be really hard on a persons body too to take > it every day. He tried alot of other pain pills and seems like none > worked until the morphine and then he had to have that doubled from > what he was on too originally. It makes him sleep so much too. . > > > > > > > > > > > Subject: Re: Bad News > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > > > > > Bob > > > > > > In my books, you are allowed to come in and vent your feelings!!! > > > Can't hold them in so that they become a pressure cooker. One > day, > > > I want to put a short version of my walk with all these health and > > > family issues, so that I can just refer folks to it. > > > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > > For the following 3-1/2 yrssometimes I worried a bit; but, > mostly I > > > watched the new drugs coming up the ladder. That were going to > > > allow me to try and kick the dragon. I figured they would hit the > > > market until 2011. Well, they are the new drug out there now, > since > > > last spring; but, I'm Canadian and as far as I know they have not > > > been accepted by every echelon of the red tape here. However, I > was > > > asked to participate in a trial for just these these very drugs in > > > 2009. Finally, the dragon got caught and mortally wounded. > > > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > > resection in Apr 2010; but, the cancer returned in only 15 months. > > > I have looked around for some miracle to totally stop the cancer; > > > but, the only thing offered was a procedure which takes several > > > times to perfect and in the meantime, spills chemo into my system. > > > No thanks!!! I've had enough of feeling like somebody has > dragged > > > me through a keyhole several times. Truly, I do not have a desire > > > to get quantity of life anymore, I want quality for whatever I > have > > > left. > > > > > > I don't have to guess, I know how I'm going to die (barring an > > > accident). I just don't know the end date. However, I try to > have > > > a good and grateful day, every time I wake up. Like today. I'm > on > > > the very west coast of Canada and we had some pretty nasty, back > to > > > back storms hit us. Yet, this morning is an absolutely beautiful > > > day so far. > > > > > > By the way - I was experiencing a lot of falls as well. This time > > > the Dr sent me to an Ophthalmologist who has told me that my > > > distance sight is so bad that I literally can not see my feet in > the > > > dusk. I have to go back for 2 more visits and buy some glasses > > > now. In fact, he told me that if I continued the way I was, he > was > > > obliged to notify Motor Vehicles and they would pull my license. > > > Also, I have slight tremors that I notice especially if I hold my > > > arms out and have even had a little difficulty with a cup of > > whatever. > > > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > > the shakes and how unsteady I am on my feet when I'm walking some > > > days, you sure would think that I just had my last drink a few > hours > > > ago. > > > > > > Hope this helps Bob!!! I only wanted to tell you this, because > I do > > > know how it feels to literally be given the death sentence. For > me, > > > I have a strong spiritual faith to lean on and that is why I am > not > > > afraid. No, I'm not religious, although I have absolutely nothing > > > to say on how people find a Higher Power. > > > > > > Gloria > > > > > > ________________________________ > > > > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 > because > > > of a 18000+ white count and severe rebound tenderness to my > > > gallbladder. Several gall stones were discovered last week in my > > > semiannual sonogram. My hepatologist admitted me to the hospital > > > that day and started me on a course of iv antibiotic that lasted 3 > > > days before the white count dropped to normal. I had also > developed > > > shaking in my hands to the point I could no longer write and have > > > had a heck of a time typing on this keyboard. A cbc was done and > my > > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > > infusions. I've had several falls recently. I got a cane to help > > > with my unsteadyness. > > > My wife spoke to my hematologist and asked her what my prognosis > is. > > > The doc said that due to my heart problems (double bypass) and the > > > ongoing anemia plus my age (63), I was not a good candidate for a > > > transplant. I've been seeing the transplant group since early > 2006. > > > I was told because the damage to my liver, that if I required > > > anesthesia, that I would not wake up. Therefore, They would not > > > allow any surgery. Sounds like a death sentence to me. > Apparently, I > > > have been diagnosed with Parkinson's and got a Rx upon discharge > > > Sunday that will treat the Parkinson's. > > > I apologize for venting. I had to tell someone who knows what I'm > > > going through. I don't drink or do drugs and I don't have any > > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > > have no idea what caused the cirrhosis. I'll shut up now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2012 Report Share Posted January 28, 2012 Bobby, You wouldn't believe some of the stuff I've been through with people. Sadly, in my case most seem to judge me right off the bat without knowing anything about me. The worst was when I went before the disability judge......that was so terrible I don't even want to talk about it. The guy had a real attitude toward me and was very condescending and rude. I try not to let it get to me and just remember that it's all in God's hands. I'll definitely have to get one of those nano robots when they come out. I will say one thing about my disability case.....in my final letter he wrote that I had called the pharmacist and was irate and slurring my words. As far as irate........they had just told me no matter what doc said, they were not going to fill my prescription and slurring my words......ENCEPHALOPATHY. He made it sound like I was a drunken drug addict. My file is now at final court to reviewed since the judge just flat out stated I couldn't be trusted because I had the audacity to file for unemployment which was recommended by my lawyer. That pharmacist had a real problem with me getting pain medication and obviously called my doctor to complain. Much love, Roni > Dear Roni, I am sorry about you going through all that. It is > just insane the chaos which can come from ignorance. I expect > things to get much worse before they get better, and then > everything will suddenly change--when the singularity happens,-- we > will be given nano robots through an IV and they will clean up liver > fibrosis, restore normal portal pressure, correct genetic defects > causing autoimmune hepatitis, and so on an so forth. If any one does > not know what the singularity is here is a link. Do not go there is > you frighten easily. The concept is not for the faint of heart Love, > Bobby > http://en.wikipedia.org/wiki/Technological_singularity > > > > ________________________________ > > To: livercirrhosissupport > Sent: Thursday, January 26, 2012 10:09 AM > Subject: Re: Bad News > > Bonnie, > > Does he take Lactulose for the cirrhosis? It's the medication that > keeps ammonia down by making you go to bathroom alot. This keeps me > from getting constipated from the morphine. Detoxing from morphine is > basically detoxing from heroine. It's a horrible thing to go > through. It's also dangerous and should be done under a doctor. > Sadly, my ex-pharmacist has sent me into detox once and my doctor. I > learned I had to find something in case this happens again. Once my > pharmacist refused to give me medication even after doctor called it > in and another time my pain doctor denied my refill because I had > gotten my days mixed up and was a day late for an appointment when the > doctor wasn't there. They didn't bother to inform me of this until I > called for refill. All of you that have great doctors, you are very > lucky. Maybe when he is jerking......he is due for another dose? I'm > not a doctor but it wouldn't surprise me if the morphine is causing > that particular symptom. Wish you both the best. > > Roni > > > > > I think maybe the jerking is from the morphine but instead of > > running out like you did he may be getting too much. I mentioned > > that to the dr but she didn' t seem to say much and never changed > > the amount. And of course he wants it!! And doesn't want to cut it > > down. > > With the 60 mg 2 times a day of the slow acting and then popping the > > fast acting 15mg when needed he's getting alot in his body. He will > > be sitting and all of a sudden his arms fly out with no control. one > > day I was driving him back from the Dr and he had been sitting > > sleeping and all of a sudden his arms started to fly and his legs > > were kicking and i was afraid i was in arms length to get hit as > > wild as he was . i hollered at him to wake him up and said whats > > wrong and then he kind of woke up and said--what was that? did you > > see that?==so i think he was trying to hit and kick at something he > > saw in his mind. It was pretty wild for alittle bit. Thought I was > > going to have to stop until he settled down. He gets so constipated > > from the morphine so takes alot of milk of magnesia. Maybe then > > when you got off of it for a time like that it reversed and gave you > > the diarrhea so bad instead. Dr told him he would be on the morphine > > for the rest of his > > life. That has got to be really hard on a persons body too to take > > it every day. He tried alot of other pain pills and seems like none > > worked until the morphine and then he had to have that doubled from > > what he was on too originally. It makes him sleep so much too. . > > > > > > > > > > > > > > > > Subject: Re: Bad News > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > > > > > > > > > Bob > > > > > > > > In my books, you are allowed to come in and vent your > feelings!!! > > > > Can't hold them in so that they become a pressure cooker. One > > day, > > > > I want to put a short version of my walk with all these health > and > > > > family issues, so that I can just refer folks to it. > > > > > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I > began > > > > the 1st tx. However, in 2005, at the end of that tx - I was a > NR. > > > > For the following 3-1/2 yrssometimes I worried a bit; but, > > mostly I > > > > watched the new drugs coming up the ladder. That were going to > > > > allow me to try and kick the dragon. I figured they would hit > the > > > > market until 2011. Well, they are the new drug out there now, > > since > > > > last spring; but, I'm Canadian and as far as I know they have > not > > > > been accepted by every echelon of the red tape here. However, I > > was > > > > asked to participate in a trial for just these these very > drugs in > > > > 2009. Finally, the dragon got caught and mortally wounded. > > > > > > > > However, it left me a parting gift. Liver cancer!! I had a > liver > > > > resection in Apr 2010; but, the cancer returned in only 15 > months. > > > > I have looked around for some miracle to totally stop the > cancer; > > > > but, the only thing offered was a procedure which takes several > > > > times to perfect and in the meantime, spills chemo into my > system. > > > > No thanks!!! I've had enough of feeling like somebody has > > dragged > > > > me through a keyhole several times. Truly, I do not have a > desire > > > > to get quantity of life anymore, I want quality for whatever I > > have > > > > left. > > > > > > > > I don't have to guess, I know how I'm going to die (barring an > > > > accident). I just don't know the end date. However, I try to > > have > > > > a good and grateful day, every time I wake up. Like today. I'm > > on > > > > the very west coast of Canada and we had some pretty nasty, back > > to > > > > back storms hit us. Yet, this morning is an absolutely > beautiful > > > > day so far. > > > > > > > > By the way - I was experiencing a lot of falls as well. This > time > > > > the Dr sent me to an Ophthalmologist who has told me that my > > > > distance sight is so bad that I literally can not see my feet in > > the > > > > dusk. I have to go back for 2 more visits and buy some glasses > > > > now. In fact, he told me that if I continued the way I was, he > > was > > > > obliged to notify Motor Vehicles and they would pull my license. > > > > Also, I have slight tremors that I notice especially if I hold > my > > > > arms out and have even had a little difficulty with a cup of > > > whatever. > > > > > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, > between > > > > the shakes and how unsteady I am on my feet when I'm walking > some > > > > days, you sure would think that I just had my last drink a few > > hours > > > > ago. > > > > > > > > Hope this helps Bob!!! I only wanted to tell you this, because > > I do > > > > know how it feels to literally be given the death sentence. For > > me, > > > > I have a strong spiritual faith to lean on and that is why I am > > not > > > > afraid. No, I'm not religious, although I have absolutely > nothing > > > > to say on how people find a Higher Power. > > > > > > > > Gloria > > > > > > > > ________________________________ > > > > > > > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 > > because > > > > of a 18000+ white count and severe rebound tenderness to my > > > > gallbladder. Several gall stones were discovered last week in my > > > > semiannual sonogram. My hepatologist admitted me to the hospital > > > > that day and started me on a course of iv antibiotic that > lasted 3 > > > > days before the white count dropped to normal. I had also > > developed > > > > shaking in my hands to the point I could no longer write and > have > > > > had a heck of a time typing on this keyboard. A cbc was done and > > my > > > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > > > infusions. I've had several falls recently. I got a cane to help > > > > with my unsteadyness. > > > > My wife spoke to my hematologist and asked her what my prognosis > > is. > > > > The doc said that due to my heart problems (double bypass) and > the > > > > ongoing anemia plus my age (63), I was not a good candidate > for a > > > > transplant. I've been seeing the transplant group since early > > 2006. > > > > I was told because the damage to my liver, that if I required > > > > anesthesia, that I would not wake up. Therefore, They would not > > > > allow any surgery. Sounds like a death sentence to me. > > Apparently, I > > > > have been diagnosed with Parkinson's and got a Rx upon discharge > > > > Sunday that will treat the Parkinson's. > > > > I apologize for venting. I had to tell someone who knows what > I'm > > > > going through. I don't drink or do drugs and I don't have any > > > > tattoos. My dx is cryptogenic cirrhosis which of course means > they > > > > have no idea what caused the cirrhosis. I'll shut up now. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2012 Report Share Posted January 28, 2012 Bobby I wasn't good with street drugs and gave up any hint of an addiction, when I really got to work with my drinking.  I know of 1 fella that had been a friend, that did get hooked on his pain meds. He and his wife left the valley and we didn't know anything for a few years. Then word filtered back that he had died of the addiction. I can only bet that he was definitely not taking them as prescribed... I've just always figured that when the time comes, the last thing I'm going to be thinking of is addiction. Who's gonna care?? I'd rather go out being in a good space with Oxy anyway. You do not sound arrogant to me at all. You've got so much more time invested and have done the research. I appreciate when anyone can bring me up to speed. By the way, a number of years ago, I was just getting to know one of the recovery centers counselors after he'd had to retire due to his health. He loved getting me to play crib with him. One night, I had come in for a Board meeting and he waited for me so that we could have a game. About 1/2 way, I was suspecting something wasn't right. Of course, I had offered him a ride home; but, when he stood up, he went down just as fast. So, I rushed him into the hospital and when they were booking him in, my name got on some of his paperwork. Well, he came back easily that time, a little harder the next and then the 3rd time - I was too chicken to phone the hospital. Hubby came home that day and 1st thing in the morning, told me I had to call. They told me that he likely wouldn't make it through the day. So, we rushed up to be with him. That was the very first time that I sat vigil and helped someone leave this life. It was upsetting the first time he gasped for breath; but, the nurses explained it to me and I calmed. I wasn't actually holding his hand when he passed; but, I didn't get all upset. After all, it wasn't up to me to keep him here, when the Higher Power had it all in hand. Another friend here, had to have one leg amputated due to his diabetes. Recently, he was rushed to the hospital and I went up to sit with him that 1st day. Unfortunately, I chose not to go back once his son had arrived. You know, we just get busy?? One afternoon I went to the hospital to visit with my Dad, who was doing just fine after his operation. When I asked about my friend, I was told basically, that I was too late, he'd passed earlier that day. There is no way that I can be sad though. I knew that his life had not been so happy when he lost his first leg. However, when I learned that they had taken his other leg - I knew that he had to go. I'm content that his Higher Power took him out, to whatever awaits us. I want my close family and friends to understand, that when it's my turn - it's not sad!!! When everything came together like a puzzle in Sept, it was like all those paths that I didn't understand came together and now my Creator and I will walk the final journey together. I've told my son that I want happy music at my service and that all he has to say, to get it started, is how much his mother talked. That will bring out a huge laugh because that's my claim to fame. ________________________________  I was worried that I might sound arrogant is all. I am glad you didn.t take offense. I am glad to hear that you sound much more open minded about it than I was when Ardis was in the hospice. I did not want her to be doped up, and unable to say good bye to me. I know it sound so selfish. Plus, I have always been against drugs in general. My whole life I have had this irrational bias. Now I rely on medication myself in order to have any kind of decent life, and my opinion is much changed. By the way, Ardis, despite being opiate naive, and having a 30 mg dose of roxynol, (liquid morphine), (5 mg is a lot for some one not used to it) she was still able to talk to me on her last day, and in her own way, she was able to say good bye. love, Bobby > > > > > > Subject: Re: Bad News > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > Bob > > > > In my books, you are allowed to come in and vent your feelings!!!   > > Can't hold them in so that they become a pressure cooker. One day, > > I want to put a short version of my walk with all these health and > > family issues, so that I can just refer folks to it. > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > the 1st tx. However, in 2005, at the end of that tx - I was a NR.   > > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > > watched the new drugs coming up the ladder. That were going to > > allow me to try and kick the dragon. I figured they would hit the > > market until 2011. Well, they are the new drug out there now, since > > last spring; but, I'm Canadian and as far as I know they have not > > been accepted by every echelon of the red tape here. However, I was > > asked to participate in a trial for just these these very drugs in > > 2009. Finally, the dragon got caught and mortally wounded. > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > resection in Apr 2010; but, the cancer returned in only 15 months.   > > I have looked around for some miracle to totally stop the cancer; > > but, the only thing offered was a procedure which takes several > > times to perfect and in the meantime, spills chemo into my system.   > > No thanks!!!   I've had enough of feeling like somebody has dragged > > me through a keyhole several times. Truly, I do not have a desire > > to get quantity of life anymore, I want quality for whatever I have > > left. > > > > I don't have to guess, I know how I'm going to die (barring an > > accident). I just don't know the end date. However, I try to have > > a good and grateful day, every time I wake up. Like today. I'm on > > the very west coast of Canada and we had some pretty nasty, back to > > back storms hit us. Yet, this morning is an absolutely beautiful > > day so far. > > > > By the way - I was experiencing a lot of falls as well. This time > > the Dr sent me to an Ophthalmologist who has told me that my > > distance sight is so bad that I literally can not see my feet in the > > dusk. I have to go back for 2 more visits and buy some glasses > > now. In fact, he told me that if I continued the way I was, he was > > obliged to notify Motor Vehicles and they would pull my license.   > > Also, I have slight tremors that I notice especially if I hold my > > arms out and have even had a little difficulty with a cup of whatever. > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > the shakes and how unsteady I am on my feet when I'm walking some > > days, you sure would think that I just had my last drink a few hours > > ago. > > > > Hope this helps Bob!!! I only wanted to tell you this, because I do > > know how it feels to literally be given the death sentence. For me, > > I have a strong spiritual faith to lean on and that is why I am not > > afraid. No, I'm not religious, although I have absolutely nothing > > to say on how people find a Higher Power. > > > > Gloria > > > > ________________________________ > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > > of a 18000+ white count and severe rebound tenderness to my > > gallbladder. Several gall stones were discovered last week in my > > semiannual sonogram. My hepatologist admitted me to the hospital > > that day and started me on a course of iv antibiotic that lasted 3 > > days before the white count dropped to normal. I had also developed > > shaking in my hands to the point I could no longer write and have > > had a heck of a time typing on this keyboard. A cbc was done and my > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > infusions. I've had several falls recently. I got a cane to help > > with my unsteadyness. > > My wife spoke to my hematologist and asked her what my prognosis is. > > The doc said that due to my heart problems (double bypass) and the > > ongoing anemia plus my age (63), I was not a good candidate for a > > transplant. I've been seeing the transplant group since early 2006. > > I was told because the damage to my liver, that if I required > > anesthesia, that I would not wake up. Therefore, They would not > > allow any surgery. Sounds like a death sentence to me. Apparently, I > > have been diagnosed with Parkinson's and got a Rx upon discharge > > Sunday that will treat the Parkinson's. > > I apologize for venting. I had to tell someone who knows what I'm > > going through. I don't drink or do drugs and I don't have any > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > have no idea what caused the cirrhosis. I'll shut up now. > > > > Quote Link to comment Share on other sites More sharing options...
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