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Living Donor Transplant
My husband had to stop his Hep C triple therapy treatment (with Incivik) as he has decompensated advance liver disease and was unable to tolerate the treatment after 5 weeks. His 4 week test result shows the treatment was working (viral load <43). His doctor said we can expect the virus to resurface quickly. We are now moving on to Plan B which is a liver transplant. His Meld score is now 24 after this latest hospitalization and the effect the treatment has had on his kidneys. Unfortunately, in NYC you need to have a Meld score of 30 to be highest priority. By the time he gets there I fear he will be a very sick man. So we are looking into other possibilities including maybe asking his 39 year old son if he would be a living donor for his Dad. I would appreciate it if any of you have any experience in this area that you can share. I don't even know if he is a match at this point but I am not feeling too good about putting any pressure on his son to do this.
Best Answer
If your husband has encephalopathy, he may not get his clarity back. . .
However, if he wants to take a couple of weeks, then sure do it.
Certainly an advantage to having a live liver transplant is the possibility of the recipient being in better health than if you had to wait.
My best to you both.
OH
However, if he wants to take a couple of weeks, then sure do it.
Certainly an advantage to having a live liver transplant is the possibility of the recipient being in better health than if you had to wait.
My best to you both.
OH
Wow, what an interesting road you took to get your health back. That's just wonderful
I started talking seriously to my husband today about our next steps. He said he needs a couple of weeks to get his strength back and to do some thinking now that it is a bit clearer. (Last night he was a little out of it. I think he is still having residual issues from the treatment which he stopped 2 weeks ago tomorrow). I told him okay but not a day more. We really need to decide what we are doing, as waiting for a transplant when he has a Meld score of 30 is just not an option as I see it.
I started talking seriously to my husband today about our next steps. He said he needs a couple of weeks to get his strength back and to do some thinking now that it is a bit clearer. (Last night he was a little out of it. I think he is still having residual issues from the treatment which he stopped 2 weeks ago tomorrow). I told him okay but not a day more. We really need to decide what we are doing, as waiting for a transplant when he has a Meld score of 30 is just not an option as I see it.
I'm fine with sharing most anything.
I did have encephalopathy. As long as I took lactulose I wasn't too looney tunes.Once, when I stopped taking it for a while, I landed up delirious in the ER.
For whatever reason I never did have varices.
I had acsites and towards the end, endema.
My biggest complication was an occluded ( blocked) portal vein.
My situation is unique. Since I didn't have insurance, I couldn't even get pretesting for my transplant.
It didn't matter how much money I had in the bank.
So, after some search, my husband, daughter and I landed up going to Taiwan where we had the surgery. ( The center claimed no donor mortalities in over 600 transplants)
This is my long winded story of why I have no idea what my MELD score was, other than it was over 20 and in my area, it would have to be at least 28 before I could get a transplant.
One interesting fact about this medical center in Taiwan, is all the transplants done there are from related donors, even if it's cadaveric.
If we could get records from them about rejection rates, we'd know more clearly how related donors affect rejection.
Take care,
OH
I did have encephalopathy. As long as I took lactulose I wasn't too looney tunes.Once, when I stopped taking it for a while, I landed up delirious in the ER.
For whatever reason I never did have varices.
I had acsites and towards the end, endema.
My biggest complication was an occluded ( blocked) portal vein.
My situation is unique. Since I didn't have insurance, I couldn't even get pretesting for my transplant.
It didn't matter how much money I had in the bank.
So, after some search, my husband, daughter and I landed up going to Taiwan where we had the surgery. ( The center claimed no donor mortalities in over 600 transplants)
This is my long winded story of why I have no idea what my MELD score was, other than it was over 20 and in my area, it would have to be at least 28 before I could get a transplant.
One interesting fact about this medical center in Taiwan, is all the transplants done there are from related donors, even if it's cadaveric.
If we could get records from them about rejection rates, we'd know more clearly how related donors affect rejection.
Take care,
OH
If you wouldn't mind saying, could you let me know what you Meld score was at the time of your transplant? I know when you have a living donor it doesn't matter but I'm just trying to better gauge where my husband is in terms of his illness. Did you also have varices and bouts of hepatic encephalopathy?
If you would rather not share this info, I perfectly understand.
If you would rather not share this info, I perfectly understand.
Based on what I have been going through since December, I have no doubt that your husband did have a very hard time. But I'm sure he feels it was all worth it now!
All the best with your new treatment.
All the best with your new treatment.
The potential donor will have to see a counselor at the hospital. The interview will be to determine that he has not been coerced into the decision and to be sure he is emotionally up to it.
He will undergo tests to be sure they are a match. The first thing would be to find out blood types.
When the decision came to do the transplant, I could tell my sister didn't really want to do it. She was relieved when told she was too old.
My son kept offering but in a hesitant way.
Whereas, my daughter was very clear and had few doubts.
I actually never asked anyone, they offered.
What I did was talk in general about how I liked the idea of live liver transplantation, I still do.
I felt the need to 'hurry' also.
My son wanted me to put off the transplant by a week or so as he might be able to be there with us.
Some inner voice kept saying, " I can't wait."
At the time of my transplant, I was living on 8% of my liver. The surgeon said I probably had only 6-8 weeks of life left.
If your son wants to talk to someone, I'll ask my daughter if she'd be willing to talk to him, at least via email.
Do take care of yourself. You have to be in good shape mentally and have the stamina to care for your husband.
At times I thought the transplant was harder on my husband than on me.
OH
He will undergo tests to be sure they are a match. The first thing would be to find out blood types.
When the decision came to do the transplant, I could tell my sister didn't really want to do it. She was relieved when told she was too old.
My son kept offering but in a hesitant way.
Whereas, my daughter was very clear and had few doubts.
I actually never asked anyone, they offered.
What I did was talk in general about how I liked the idea of live liver transplantation, I still do.
I felt the need to 'hurry' also.
My son wanted me to put off the transplant by a week or so as he might be able to be there with us.
Some inner voice kept saying, " I can't wait."
At the time of my transplant, I was living on 8% of my liver. The surgeon said I probably had only 6-8 weeks of life left.
If your son wants to talk to someone, I'll ask my daughter if she'd be willing to talk to him, at least via email.
Do take care of yourself. You have to be in good shape mentally and have the stamina to care for your husband.
At times I thought the transplant was harder on my husband than on me.
OH
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There is so much that people, including the surgeons, scientists and other doctors don't know about transplantation ( among other things!)
My heptaologist is conservative. Yet, he thinks there is a possibility that the genetic link may make rejection less likely. He also thinks it may make me a good candidate for going off immune suppression meds, I controversial topic amongst the transplant community.
I have had no rejection episodes. I'm on a very minimum of immune suppression meds, .5mg prograf twice daily.
Many people years out are taking more meds than me.
However, our children our not our clones.
I went into surgery with no health problems other than my liver.
And I feel this is very important, I walked as much as I could up until surgery and afterwords. Granted my energy was ebbing away prior to my transplant and I had days I made it from the bed to the couch and back again. But if I could, I got out and walked.
With people dying from the lack of cadaveric livers, live liver transplantation is an excellent choice.
And, I think there are many advantages to it over a cadaveric liver.
You will know his liver will be younger and healthy. The cells haven't gone through the shock of death or disease.
Now, I'm not a scientist, I have no data to back me up. I only have my gut feeling, or maybe, its my daughter's gut feeling!!
OH
Cando: The reason why the father isn't the one to talk to his son, is he is extremely sick. This illness effects our emotions and our mental capacities.
I was so out of it. Although it annoyed me to have people talking about me instead of to me, my mind was not clear. I understand this now.