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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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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
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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.