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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
Thanks for posting.
Contact the transplant center and get all of their paper work on Living Donor Transplantation. It will tell you about the process and who can qualify to be a donor and who can't. And give you guidelines for thinking about some of the question I ask below. If you need more help they probably have resources at the TP center that can help you with the decision.
Living Donor Transplants are a complicated issue. This is something that should not be entered into lightly.
Has your son offered to donate part of his liver to his dad on his own?
There needs to be no pressure on him to do so. He must be doing it of his own free will which is very difficult in a family environment.
Does your husband and yourself want your son to undergo a major operation where they is a risk, although it is very small, of him having medical complications or possibly die? A transplant is major surgery. Any surgery implies some risk. Could you and your husband live knowing that in order for your husband to live you allowed your son to have medical problems or possibly die?
I hate to be so blunt but this is the really of the situation.
The next step is to get your son's blood type. Is it compatible with match your husband's? If so, then he will start the process of seeing with his liver will work inside of your husband. They have to look at the size, connections, etc. Lots of imaging will be done. Make sure your husband's insurance will pay for all this.
A good thing to keep in mind. ONLY 1/3 of Living Donor Transplant donors match the recipient.
So it is a very daunting psychological and medical ordeal for everyone involved but because of the shortage of deceased donor organs and the long wait times in regions such as New York and California LDT has an important role to play in liver transplants.
I do have a close friend who has received a LDT about 4 months ago so my knowledge is based on what I have seen him go through.
I wish your family all the best!
Hector
Contact the transplant center and get all of their paper work on Living Donor Transplantation. It will tell you about the process and who can qualify to be a donor and who can't. And give you guidelines for thinking about some of the question I ask below. If you need more help they probably have resources at the TP center that can help you with the decision.
Living Donor Transplants are a complicated issue. This is something that should not be entered into lightly.
Has your son offered to donate part of his liver to his dad on his own?
There needs to be no pressure on him to do so. He must be doing it of his own free will which is very difficult in a family environment.
Does your husband and yourself want your son to undergo a major operation where they is a risk, although it is very small, of him having medical complications or possibly die? A transplant is major surgery. Any surgery implies some risk. Could you and your husband live knowing that in order for your husband to live you allowed your son to have medical problems or possibly die?
I hate to be so blunt but this is the really of the situation.
The next step is to get your son's blood type. Is it compatible with match your husband's? If so, then he will start the process of seeing with his liver will work inside of your husband. They have to look at the size, connections, etc. Lots of imaging will be done. Make sure your husband's insurance will pay for all this.
A good thing to keep in mind. ONLY 1/3 of Living Donor Transplant donors match the recipient.
So it is a very daunting psychological and medical ordeal for everyone involved but because of the shortage of deceased donor organs and the long wait times in regions such as New York and California LDT has an important role to play in liver transplants.
I do have a close friend who has received a LDT about 4 months ago so my knowledge is based on what I have seen him go through.
I wish your family all the best!
Hector
P.S. I also may have the opportunity to have my 21 year old nephew donate part of his liver to me but as of now I personally don't feel I want him to do it because he is just starting his life. He has offered to do this for me. It is a tough decision. If it is either death or a LDT I can't say if I might change my mind. It is someone each of us has to decides according to our own moral code.
Hector
Hector
as usual Hector gives a heartfelt, insightful and well written response. the following is a news story about a liver donor dying in denver. this death was heartbreaking to all the staff in the transplant team at university of colorado hospital. the donor was a young father with 3 children.
http://www.kdvr.com/news/kdvr-liver-transplant-death-txt,0,3369112.story
http://www.kdvr.com/news/kdvr-liver-transplant-death-txt,0,3369112.story
There are risks for both donor and recipient, but many living donor transplants have happy endings. An article about one of the NY/tri-state area's most renowned docs and living donor liver TP success:
http://www.bioethicsinternational.org/blog/2008/01/18/liver-of-love-to-save-his-dying-uncle-man-agrees-to-risky-living-donor-transplant-1st-in-ct/
Both the recipient and donor have to go through very extensive evaluation and assessment, and as Hector points out, it is not a straightforward decision; lots of caveats, medically, emotionally, and psychologically. Best of luck working this through and moving forward. ~eureka
http://www.bioethicsinternational.org/blog/2008/01/18/liver-of-love-to-save-his-dying-uncle-man-agrees-to-risky-living-donor-transplant-1st-in-ct/
Both the recipient and donor have to go through very extensive evaluation and assessment, and as Hector points out, it is not a straightforward decision; lots of caveats, medically, emotionally, and psychologically. Best of luck working this through and moving forward. ~eureka
i apologize if my previous post was a bummer. another member of this board received a living donor transplant and is currently starting the triple therapy. i believe the donor was her child and believe both have done well. perhaps she will say a few words about her experience. things can be slow around here on the weekends, and she may not respond.
blessings
eric
blessings
eric
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.
Thank you for your answer to my question. I think it is really important to know all the facts and the best possible scenario for survival. I agree that OH's story is so inspiring and gives hope to us all.
The process and decision making ahead of you is not an easy one, and I wish you the best of luck. My husband and I were in a similar situation a year ago; my stepson was willing to donate his liver, but my husband was hesitant about the risks for him. Unfortunately, when his liver cancers were detected last year, there were too many of them for my husband to be even considered eligible for transplant, so he cannot even accept a living donor liver now.
Though the occurrence of HCC does not necessarily affect people with cirrhosis, about 5% per year, it can be a game-changer, so to say. The unfortunate reality is that the window of opportunity for transplantation can be very narrow, depending on circumstances, so good to have that conversation with your stepson sooner rather than later. My heart goes out to you in all this. It can be so tough being a caregiver, and you seem to be doing a wonderful job... take care of yourself, too. ~eureka
Though the occurrence of HCC does not necessarily affect people with cirrhosis, about 5% per year, it can be a game-changer, so to say. The unfortunate reality is that the window of opportunity for transplantation can be very narrow, depending on circumstances, so good to have that conversation with your stepson sooner rather than later. My heart goes out to you in all this. It can be so tough being a caregiver, and you seem to be doing a wonderful job... take care of yourself, too. ~eureka
I got so emotional when I read your post. I am so sorry for your husband. This is my greatest fear and why I feel this unbelievable feeling to HURRY now that we know the the possibility of curing his Hep C is over. Thank you for confirming what I felt in my gut.
My husband is more the exception than the rule, I believe, but I completely understand the anxiety that goes along with the circumstances. I would say don't panic, but apply due diligence -- if your husband's already been through the evaluation process for transplantation you know how extensive it can be, and a living donor basically has to go through the same process, and then some.
There are also logistical considerations; if your stepson lives out of the area, his needs post-surgery will be almost as demanding as those of your husband's, and he will need a support system in place if he is to be considered a donor. Most likely he and his caretaker(s) would need to relocate for the duration of surgery and recovery, so it may take some time to arrange for all those provisional needs as well.
Lots of considerations, certainly, but the first necessary step will be for your stepson to contact your husband's Transplantation Center directly if he is willing to donate and your husband is willing to accept. One thing that TP centers DO want to see is 100% commitment from the donor, and that means the person donating will have to actively pursue the donation process.
I'd also echo what Hector said: you do want to choose a TP center that has a good track-record with LDTs; hopefully your husband's TP center already has extensive experience with LDTs and can assist you well in the process.
Thank you for your sympathy; all things considered, my husband is fortunate in that he's not had too many symptoms of decompensation over the years (his MELD is only an 8), and has outlived just about every doctor's prognosis for him, so we've learned to count our blessings. May God give you and your husband many in the coming future.~eureka
There are also logistical considerations; if your stepson lives out of the area, his needs post-surgery will be almost as demanding as those of your husband's, and he will need a support system in place if he is to be considered a donor. Most likely he and his caretaker(s) would need to relocate for the duration of surgery and recovery, so it may take some time to arrange for all those provisional needs as well.
Lots of considerations, certainly, but the first necessary step will be for your stepson to contact your husband's Transplantation Center directly if he is willing to donate and your husband is willing to accept. One thing that TP centers DO want to see is 100% commitment from the donor, and that means the person donating will have to actively pursue the donation process.
I'd also echo what Hector said: you do want to choose a TP center that has a good track-record with LDTs; hopefully your husband's TP center already has extensive experience with LDTs and can assist you well in the process.
Thank you for your sympathy; all things considered, my husband is fortunate in that he's not had too many symptoms of decompensation over the years (his MELD is only an 8), and has outlived just about every doctor's prognosis for him, so we've learned to count our blessings. May God give you and your husband many in the coming future.~eureka
You give me great hope at a time when I need it. This has been tough on both of us but the thought of the alternative is much worse. I know every case is different and maybe he won't be as blessed as you have been with your transplant but I want to help him get the best shot possible for success.
I am very cognizant of what is being asked of his son and if I get any sense that he is not 100% for doing this, I will drop it and move on to getting him on a list in the state where he has extended family just 20 miles from the transplant center.
Thank you all for your input. It has been truly helpful in clarifying everything for me in how to proceed.
I am very cognizant of what is being asked of his son and if I get any sense that he is not 100% for doing this, I will drop it and move on to getting him on a list in the state where he has extended family just 20 miles from the transplant center.
Thank you all for your input. It has been truly helpful in clarifying everything for me in how to proceed.
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
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.
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.
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
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.
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
I spoke to his son and could tell immediately from the way the conversation was going this was not something he could do. So I backed off. Last night my husband had the worst attack of encephalopathy he has had to date.
It took me 8 hours to get him to take the lactulose. Once he did, he was able to get to sleep. He is better today but I have no idea when it will happen again or what sets it off. This is taking such a toll on both of us. I will be calling the transplant center in the other state tomorrow morning. I understand that this is so much to ask of someone so I am not upset with his son..maybe just a little disappointed. But now we will just move on.
It took me 8 hours to get him to take the lactulose. Once he did, he was able to get to sleep. He is better today but I have no idea when it will happen again or what sets it off. This is taking such a toll on both of us. I will be calling the transplant center in the other state tomorrow morning. I understand that this is so much to ask of someone so I am not upset with his son..maybe just a little disappointed. But now we will just move on.
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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.