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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
Yes, He takes lactulose three times a day. I have increased the amount over the last couple of days. I try to have him drink more fluids but it is difficult.
Thank you very much for the suggestions you emailed me. This site has been a big help to me. I appreciate it very much.
Thank you very much for the suggestions you emailed me. This site has been a big help to me. I appreciate it very much.
There's a couple of alternatives to dairy milk you can try; soy milk is a possible alternative, and almond milk is both tasty and a decent source of protein. Orphanedhawk knows about the lactulose better than I do, though, as my husband has not been using it.
It's a tough balance when they already have so little appetite, but keeping the sodium to a minimum is definitely a good thing. I hope his doc is right and his behavior and cognition improves once the residuals of interferon go away. A big hug to you.
It's a tough balance when they already have so little appetite, but keeping the sodium to a minimum is definitely a good thing. I hope his doc is right and his behavior and cognition improves once the residuals of interferon go away. A big hug to you.
He has not had red meat since December. I didn't know about the dairy products. He usually has 2% milk with cereal but hasn't had any the last couple of days. His appetite had decreased considerably. He eats a good breakfast but its downhill from there. We have been watching the sodium intake and that has helped reduce the swelling in his legs and belly.
The doctor said his intermittent bizarre behaviors are the residual effects of the inteferon shots he was taking and will subside with time. I sure hope so.
Thank you for your helpful responses.
The doctor said his intermittent bizarre behaviors are the residual effects of the inteferon shots he was taking and will subside with time. I sure hope so.
Thank you for your helpful responses.
Is you husband taking lactulose regularly?
He should not wait until he has an episode. He should be taking it at least twice a day, maybe more, I can't remember, exactly. It worked for me as long as I took it regularly.
My sister originally offered to be my donor but when the time came for her to commit, I began to think she was especially worried about a potential scar!
My son who kept hemming and hawing, just didn't have it in him to undergo surgery
.He was responding out of guilt.
My daughter was the perfect candidate but I never asked, she offered.
I can suggest you mention how you'd love to find a live donor to friends and family, don't push, just put the idea out there and see if anyone responds.
Yes, move on. Many people do just fine with cadaveric transplants.
Good luck.
OH
He should not wait until he has an episode. He should be taking it at least twice a day, maybe more, I can't remember, exactly. It worked for me as long as I took it regularly.
My sister originally offered to be my donor but when the time came for her to commit, I began to think she was especially worried about a potential scar!
My son who kept hemming and hawing, just didn't have it in him to undergo surgery
.He was responding out of guilt.
My daughter was the perfect candidate but I never asked, she offered.
I can suggest you mention how you'd love to find a live donor to friends and family, don't push, just put the idea out there and see if anyone responds.
Yes, move on. Many people do just fine with cadaveric transplants.
Good luck.
OH
I'm so sorry that you were disappointed and kudos to you for maintaining your compassionate attitude ... the circumstances you and your husband are facing are not easy, but at least you know you are pursing all your options in moving forward. I hope your husband's condition stabilizes well and his HE diminishes. It's important he not eat any red-meat or dairy products at all if he is having HE. Best of luck to you on the calls to the TP center. ~eureka
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.
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
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.
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
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.
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
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.
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.
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
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
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.
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
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.
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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.