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liver transplant
my hubby give up to continue medication due to all those side effects and cant wait longer time anymore, he decide to liver transplant maybe this would be this month,i cant refuse his decision knowing that he's really suffering from it, but sometimes confusion and fera runs to my mind what if this transplant doesnt work, i really dont have idea at all... any help and advice please!!!
My brother is in the hospital now in serious condition. In August we learned that he had cirrhosis and is in end stage. He was drinking alcohol two weeks prior to his hospital admission in August. He was sick for a long time prior and due to the fact that he had no insurance, he didn't seek medical help when he should have. If he doesn't get a transplant before six months, he wont survive. We heard that he has to wait a year because of his alcohol usage. Has anybody ever heard of an exception being made due to the urgancy of his getting a transplant sooner? Could a doctor from the hospital write a referral? Please let me know what you know about the system. Kathy
I'm glad that you posted your experience but sorry that you've had to endure so much. Your attitude sounds like you really have it together despite all of the setbacks you've had to face. I didn't mention that I rejected on 2 or 3 occasions - I can't recall which it is - and I was treated with solumedrol administered intravenously. I stayed in the hospital for at least a night on those occasions but was okay after the treatment. If I understand you, you're currently awaiting another liver - is that right? That must be a stressful situation and I hope that everything resolves quickly and positively for you. Having hep c and auto-immune hepatitis is rough. I assume that you're not treating the HCV. I was transplanted at Starzl Transaplantation Institute in Pittsbugh, PA. May I ask you where you were transplanted? I would like to hear more about your experiences if you care to talk about this stuff. I wish you good luck Nancy. Mike
Hello. I am new here, but I thought I should add my 2 cents because I had a liver transplant May 24, 2001. My experience was not typical, so you should definitely give more weight to Mike's input. I was one of the few who have serious complications, and these past 5 years haven't been easy, but I am still here. When I learned I had Hep C, it was already too late for treatment. My cirrhosis progressed to end-stage rapidly.
I waited a year, had a few emergencies, then my doctors hospitalized me in the hope that would get me a liver sooner.
After 2 and a half months in-hospital, 2 instances of near-coma, huge amounts of fluid being drained every 10 days or so, I received a (cadaveric) liver of a 32 year old woman. I was 53.
Unfortunately, I needed surgery before even awakening from transplant surgery, to clear a blocked Hepatic Artery. Several months later I learned it was still blocked, was re-admitted for a 2nd unsuccessful surgery. I was re-listed for a 2nd transplant, which I haven't had. My bile ducts became obstructed as well, and there have been other problems I won't go into now.
Still, I've done far better than expected.
I went home 11 days after my transplant, but only because fluid continued to leak (actually pour) from the abdominal cavity, causing much discomfort, and because I was unable to walk! I think this is very rare. I had Peripheral Vascular Disease/
poor circulation in my legs. Immediately after transplant, a machine squeezes or compresses your legs. I think my legs reacted badly to that. Once a physical therapist worked with me a few times, I could walk. I did have a bad fall in the hospital--and wasn't treated very well by the weekend latenight staff, who couldn't lift me, left me lying on the cold floor, etc.-- and 2 falls at home.
There is a great deal of medication to be taken the first year or so. A transplant patient needs to get used to taking some medication for the rest of his/her life. There are some unpleasant side effects, like hair loss, but they're temporary.
My Hep C has returned. I've also developed auto-immune hepatitis. During recent months, the joint and bone pain I've had has intensified, and movement has become very painful.
Yesterday, while searching various word combinations, I found posts on this forum indicating the connection between Hep C and arthritis-like chronic pain. I mentioned this today during my Transplant Institute visit, and I'm being referred to a Rheumatologist and, hopefully, a Pain Management Center.
I want to emphasize that my bad luck isn't typical. Most have very few problems. For example, it's common to have a Rejection episode or 2 after transplant. It surprised me at first that they have treatments for Rejection, all but one as an outpatient, and very brief.
I, too, would recommend completing treatment for HCV while you can. I think it's better if you never need a transplant but, if you do, the option will be there. Now it can be from a living donor which, if someone is willing to donate a portion of their liver to you, will eliminate the long wait, and the need to be near-death before you're eligible for an available organ. But I think transplant is for after you've tried everything else.
Nancy
I waited a year, had a few emergencies, then my doctors hospitalized me in the hope that would get me a liver sooner.
After 2 and a half months in-hospital, 2 instances of near-coma, huge amounts of fluid being drained every 10 days or so, I received a (cadaveric) liver of a 32 year old woman. I was 53.
Unfortunately, I needed surgery before even awakening from transplant surgery, to clear a blocked Hepatic Artery. Several months later I learned it was still blocked, was re-admitted for a 2nd unsuccessful surgery. I was re-listed for a 2nd transplant, which I haven't had. My bile ducts became obstructed as well, and there have been other problems I won't go into now.
Still, I've done far better than expected.
I went home 11 days after my transplant, but only because fluid continued to leak (actually pour) from the abdominal cavity, causing much discomfort, and because I was unable to walk! I think this is very rare. I had Peripheral Vascular Disease/
poor circulation in my legs. Immediately after transplant, a machine squeezes or compresses your legs. I think my legs reacted badly to that. Once a physical therapist worked with me a few times, I could walk. I did have a bad fall in the hospital--and wasn't treated very well by the weekend latenight staff, who couldn't lift me, left me lying on the cold floor, etc.-- and 2 falls at home.
There is a great deal of medication to be taken the first year or so. A transplant patient needs to get used to taking some medication for the rest of his/her life. There are some unpleasant side effects, like hair loss, but they're temporary.
My Hep C has returned. I've also developed auto-immune hepatitis. During recent months, the joint and bone pain I've had has intensified, and movement has become very painful.
Yesterday, while searching various word combinations, I found posts on this forum indicating the connection between Hep C and arthritis-like chronic pain. I mentioned this today during my Transplant Institute visit, and I'm being referred to a Rheumatologist and, hopefully, a Pain Management Center.
I want to emphasize that my bad luck isn't typical. Most have very few problems. For example, it's common to have a Rejection episode or 2 after transplant. It surprised me at first that they have treatments for Rejection, all but one as an outpatient, and very brief.
I, too, would recommend completing treatment for HCV while you can. I think it's better if you never need a transplant but, if you do, the option will be there. Now it can be from a living donor which, if someone is willing to donate a portion of their liver to you, will eliminate the long wait, and the need to be near-death before you're eligible for an available organ. But I think transplant is for after you've tried everything else.
Nancy
Hello again.
I believe that the 80% refers to the percentage of transplant patients who are alive one year after transplant surgery. The odds of getting through might even be a bit higher - maybe 85% but 80% sounds about right.
After transplantation the virus recurs. This happen almost universally so I think that you can expect that your husband will have the hepatitis after transplantation. It would be a good thing if he could eradicate the virus prior to transplant but many people can not. If the hepatitis recurs virulently he can treat after his transplant with the same drugs that we all take - interferon and ribavirin. Of course, it is not an easy treatment to tolerate before or after transplantation so be prepared for that if the virus appears to be doing damage to his new liver.
After his transplant your husband will need to take anti-rejection drugs to stop his body from rejecting his new liver. Everyone who has a transplant takes these drugs.
I was in the hospital for only 5 days when I was transplanted in 2000. There is a trend today to try and get the transplant patient out of the hospital sooner in an effort to protect them from getting an infection. Because there are a lot of infections in hospitals they are not the safest place to be when you are immune suppressed due to the anti-rejection drugs. 5 days was fast and most people don't get out that quickly.
The surgical pain isn't as bad as you probably imagine. I was walking the halls the 3rd day after transplant.
I hope that answers some of your concerns. I will be happy to answer other questions if I know the answer.
I don't know if your husband has already stopped the TX but if he hasn't I would strongly advise him to try and continue if his tests are indicating that the TX is working. The virus will likely have to be dealt with at some point and my belief is that the sooner the better and I think most transplant surgeons would agree with me in the majority of cases.
I wish you luck.
Mike
I believe that the 80% refers to the percentage of transplant patients who are alive one year after transplant surgery. The odds of getting through might even be a bit higher - maybe 85% but 80% sounds about right.
After transplantation the virus recurs. This happen almost universally so I think that you can expect that your husband will have the hepatitis after transplantation. It would be a good thing if he could eradicate the virus prior to transplant but many people can not. If the hepatitis recurs virulently he can treat after his transplant with the same drugs that we all take - interferon and ribavirin. Of course, it is not an easy treatment to tolerate before or after transplantation so be prepared for that if the virus appears to be doing damage to his new liver.
After his transplant your husband will need to take anti-rejection drugs to stop his body from rejecting his new liver. Everyone who has a transplant takes these drugs.
I was in the hospital for only 5 days when I was transplanted in 2000. There is a trend today to try and get the transplant patient out of the hospital sooner in an effort to protect them from getting an infection. Because there are a lot of infections in hospitals they are not the safest place to be when you are immune suppressed due to the anti-rejection drugs. 5 days was fast and most people don't get out that quickly.
The surgical pain isn't as bad as you probably imagine. I was walking the halls the 3rd day after transplant.
I hope that answers some of your concerns. I will be happy to answer other questions if I know the answer.
I don't know if your husband has already stopped the TX but if he hasn't I would strongly advise him to try and continue if his tests are indicating that the TX is working. The virus will likely have to be dealt with at some point and my belief is that the sooner the better and I think most transplant surgeons would agree with me in the majority of cases.
I wish you luck.
Mike
Thanks for all the post and concern knowing that is good enough to give us comfort, God bless you all guys!!!
= Mike hi again! hope it doesnt disturb you, i know your the only one who can give me exact advice and idea being a liver transplant in the group. situation is much confusing for my husband, like anybody else hcv infected there's time he feel ok and a lot of time not ( weak, fever, stomach ache, back ache and etc) he is giving up the tx due to that & plan to have transplant, the dr told us that result is 80% successfull, sometimes im thinking what if it doesnt work for him and so and so? ? ? what after the transplant? is he going to have or to take medication maintenance? what is the possibility of being be totally clear from the virus and it will not comeback again? please your advice would be a big help for us, thank you so much & God bless you!!!
= Mike hi again! hope it doesnt disturb you, i know your the only one who can give me exact advice and idea being a liver transplant in the group. situation is much confusing for my husband, like anybody else hcv infected there's time he feel ok and a lot of time not ( weak, fever, stomach ache, back ache and etc) he is giving up the tx due to that & plan to have transplant, the dr told us that result is 80% successfull, sometimes im thinking what if it doesnt work for him and so and so? ? ? what after the transplant? is he going to have or to take medication maintenance? what is the possibility of being be totally clear from the virus and it will not comeback again? please your advice would be a big help for us, thank you so much & God bless you!!!
Sorry , I don't know much about the transplants but a friend of mine just had 1 and is goin real good . Was in the hospital for less than I week .
mike is a great guy hope he can help you...
if you also go to this site below, there is a ton of information and alot of people who know about cirhosis, liver failure and transplants...many folks at this site are going through these same things too...and can help.
http://forums.delphiforums.com/liverfailure/messages
if you also go to this site below, there is a ton of information and alot of people who know about cirhosis, liver failure and transplants...many folks at this site are going through these same things too...and can help.
http://forums.delphiforums.com/liverfailure/messages
thanks for posting! i hope mike would be available to give me some advice. i dont see him posting a while ago
Sorry can't help you, but put mikes name with yours. He's had the transplant and might be able to help you. Very fine guy he is. Best to both of you
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