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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.
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Thank you for your response. There is nothing you wrote that I have not thought about myself. His son (my stepson) is not married and has no children so he seemed the logical person, as his two daughters are both married with children. But logic doesn't take into account the possible risks, does it? And it doesn't take into account the disruption to his life (i.e. work,
moving temporarily to another state, the pain involved, possible complications, etc.). But then I think about how his son would feel if his Dad got really sick waiting for a transplant (and possibly die) when he might have helped him sooner.
I appreciate your bluntness, As you said this is not an easy answer. I spoke to his transplant center today and they told me the proposed donor must make the call and he would have his own evaluation team. My husband's insurance would cover the cost of all of the testing involved.
I think I owe it to his son to give him the information and then let him decide what he wants to do.
Thank you to all who responded. It is really helping me to think it through.
moving temporarily to another state, the pain involved, possible complications, etc.). But then I think about how his son would feel if his Dad got really sick waiting for a transplant (and possibly die) when he might have helped him sooner.
I appreciate your bluntness, As you said this is not an easy answer. I spoke to his transplant center today and they told me the proposed donor must make the call and he would have his own evaluation team. My husband's insurance would cover the cost of all of the testing involved.
I think I owe it to his son to give him the information and then let him decide what he wants to do.
Thank you to all who responded. It is really helping me to think it through.
Like your husband, I tried tx with decompensated cirrhosis and had to stop.
I had a live liver transplant in April 2009 with my daughter ( who was 31) as my donor.
Originally my sister offered but was rejected. Ditto my husband.
My son and wife just had a baby.
My daughter confided afterwords that she felt it was her place in the family to do this.
She said she's rather be going into surgery with me than going to my funeral.
The idea of waiting, while I got sicker and sicker for someone to die so I could have their liver, was repulsive to me.
I don't want to offend anyone but that's how felt.
We did a lot of research into different places to have the surgery with the emphasis on donor mortality and complication rates.
For us, the surgery was a big success. My daughter was back at work 2 months post tp and her liver was fully regrown 3 months post.
We joke about how 'her' liver is.
I feel it is a huge benefit to have a living related donor.
As a genotype 2, I began hep C SOC treatment 6 weeks ago, and am doing great.
Please, feel free to ask me anything.
Good luck,
OH
I had a live liver transplant in April 2009 with my daughter ( who was 31) as my donor.
Originally my sister offered but was rejected. Ditto my husband.
My son and wife just had a baby.
My daughter confided afterwords that she felt it was her place in the family to do this.
She said she's rather be going into surgery with me than going to my funeral.
The idea of waiting, while I got sicker and sicker for someone to die so I could have their liver, was repulsive to me.
I don't want to offend anyone but that's how felt.
We did a lot of research into different places to have the surgery with the emphasis on donor mortality and complication rates.
For us, the surgery was a big success. My daughter was back at work 2 months post tp and her liver was fully regrown 3 months post.
We joke about how 'her' liver is.
I feel it is a huge benefit to have a living related donor.
As a genotype 2, I began hep C SOC treatment 6 weeks ago, and am doing great.
Please, feel free to ask me anything.
Good luck,
OH
I am so happy to hear your story. Your daughter is truly a wonderful human being. It must be quite a feeling to know she saved her mother's life. I agree with her. I too would rather go into surgery with him than attend his funeral. Unfortunately, I must be his caregiver after the surgery so that is not a possibility.
I have one question that I have not found any information about. Is there less chance of rejection of the new liver if the donor is an immediate family member? Or, does it make no difference who the donor is as long as it is compatible in all of the necessary ways?
Thank you so much for sharing your story.
I have one question that I have not found any information about. Is there less chance of rejection of the new liver if the donor is an immediate family member? Or, does it make no difference who the donor is as long as it is compatible in all of the necessary ways?
Thank you so much for sharing your story.
To answer your question about chances of rejection. (Hope I'm not step on your toes here Ophanhawk).
It makes NO difference whether the liver is from a blood relative or not. In fact a number of years ago it was through that receiving a segment of liver from a relative was more dangerous but that was because centers hasn't done many Living Donor Liver Transplants as different complications can arise. So anyone wanting to have a LDLT should go to a center that has done many Living Donor Transplants.
I don't mean to imply that it LDLT are more more dangerous than deceased donor TPs but there is one more person involved who is healthy going into the operation.
I am very grateful that ophanedhawk got her transplant from her loving and heroic daughter and is doing so well on treatment. Truly inspiring! And I can tell you her example gives me hope that one day I too may be able to overcome my own challenges with this disease.
Cheers!
Hector
It makes NO difference whether the liver is from a blood relative or not. In fact a number of years ago it was through that receiving a segment of liver from a relative was more dangerous but that was because centers hasn't done many Living Donor Liver Transplants as different complications can arise. So anyone wanting to have a LDLT should go to a center that has done many Living Donor Transplants.
I don't mean to imply that it LDLT are more more dangerous than deceased donor TPs but there is one more person involved who is healthy going into the operation.
I am very grateful that ophanedhawk got her transplant from her loving and heroic daughter and is doing so well on treatment. Truly inspiring! And I can tell you her example gives me hope that one day I too may be able to overcome my own challenges with this disease.
Cheers!
Hector
Let mesay i'm really sorry about you and your husbands situation, being i'm also cirrhotic things like this has croosed my mine. What bothers me is this statement...."I think I owe it to his son to give him the information and then let him decide what he wants to do"
Wouldn't it be better for his father to talk with his son? While i don't have any stepchildern i don't think it would be my place with such a serious nature to do something like that. And if my wife was not the mother of my sons i would not be to happy with her going to them. It would have to be me to make that decision with them.
Sorry i don't mean to sound harsh but this could become a major guilt trip. Plus if i could do it for my wife i would find a way for care giving..... Good luck
Wouldn't it be better for his father to talk with his son? While i don't have any stepchildern i don't think it would be my place with such a serious nature to do something like that. And if my wife was not the mother of my sons i would not be to happy with her going to them. It would have to be me to make that decision with them.
Sorry i don't mean to sound harsh but this could become a major guilt trip. Plus if i could do it for my wife i would find a way for care giving..... Good luck
Though it seems by my stating that I am his stepmother that we have less of a mother-son relationship, that is not the case. I have been more mother to him throughout his life than his own mother and he considers me his mom.
My thinking on this is it would be easier for him to make the decision on what is best for him if I gave him the information than his Dad. I definitely do not want him to feel obligated to do this and I think if his Dad talked to him about it he would have a harder time saying no, if that were his decision. He has always turned to me when there was a difficult decision to be made for my support and advice so that is why I feel it should come from me.
I understand your comment that you would want to be the donor and not the caregiver if you could be, but having just gone through this extremely difficult triple Hep C therapy with him, I have come to realize the importance of having the best caregiver you can have. In our case, that is me. I can only imagine what kind of care both the living donor and he will need after the transplant. I guess every situation is different and we need to realistic about what will happen before and after.
Thank you for your input.
My thinking on this is it would be easier for him to make the decision on what is best for him if I gave him the information than his Dad. I definitely do not want him to feel obligated to do this and I think if his Dad talked to him about it he would have a harder time saying no, if that were his decision. He has always turned to me when there was a difficult decision to be made for my support and advice so that is why I feel it should come from me.
I understand your comment that you would want to be the donor and not the caregiver if you could be, but having just gone through this extremely difficult triple Hep C therapy with him, I have come to realize the importance of having the best caregiver you can have. In our case, that is me. I can only imagine what kind of care both the living donor and he will need after the transplant. I guess every situation is different and we need to realistic about what will happen before and after.
Thank you for your input.
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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.