I hope everyone is doing well! I have a two part question regarding living donor transplants. Over the past few weeks I have been undergoing the evaluation process at 2 of the hospitals in my area to be placed on the transplant list. While going through the meetings with the team (surgeons,dietician,hepatologist…) one of the options discussed was having a living donor. Doctors at one hospital strongly felt that a live liver transplant was the best option for me. Due to the large number of people waiting for a transplant in this area it is likely that I will be waiting for several years for a traditional transplant, all the while the disease will be continuing to progress. They feel as though the earlier the transplant the better, and they don’t want to miss this window of opportunity where my body will be able to endure the surgery and recover quicker while I am some what healthy. I already had some knowledge about this kind of transplant and I have my reservations about allowing a family member to make such a risky sacrifice. My questions are?
Has anyone received a living donor transplant?
Have any of you been given the recommendation to consider this form of transplant?
I appreciate any feedback, P.S. My sister is adamant about being the one to give and has scheduled her testing to ensure that she is a match.
My transplant surgeon recommended the LDLT route as soon as possible while my transplant Hep recommended I wait. The surgeon's main fear was the development of CCA by waiting. There was also the concern I would get stuck with an untreatable infection if I waited. My transplant Hep's argument is that it is not all sunshine on the other side even when everything works out perfectly, what with the immunosuppression doubling the odds of all cancers, etc.
Another factor to consider is that LDLT is associated with higher rates of PSC recurrence. The speculation is that the genetic similarity of the organ causes this, but I don't think we don't have numbers (LDLT of parents/children/siblings vs. LDLT from others) to know for sure the cause.
I received a LDLT 3 yrs ago tomorrow. My son was the donor. I live in Victoria, BC and the surgery was at Vancouver General.
My sisters were also interested in donating, but the transplant team liked my son better. I found this horribly stressful. But what if I died and denied him the chance to be a donor? It was really hard to say yes. My family sat down with my son and made sure he knew the risks (my brother is a doctor).
You really cannot interfere much with the choice of donor for ethical and other reasons. The transplant team gets to choose the donor looking at match and the person with the best prognosis for a good outcome. There has to be a blood type compatibility and the structures of the donor liver have to be compatable as well in order to ‘fit’ with the recipient. Livers are not standard in shape and size like kidneys. They took a large section of the bigger right lobe.
The liver grew back in my son in about 12 weeks. He recovered over the summer and was back at university in the fall. He is doing great, but thinks he is invincible because he thinks he has a brand new liver!
There have been a few bad outcomes with donors, mostly because of flukes that can happen with any surgery.
I have been reading studies, and the rate of recurrence of PSC is significant with a donor and regular transplants. This was never brought up as an issue by the transplant team.
I got the sense at the time that they liked LDLT for PSC patients because we tend to do better if we can get the transplant before being critically sick. There are also some huge advantages to scheduling the surgery and being able to arrange life around the date rather than living with waiting for a phone call.
I have to take the anti-rejection drugs and they are harsh with several side effects. Unless the donor is a twin, I imagine you would have to take the meds. They lower the dosage for many patients and other patients lower the dosage themselves. With a living donor, I feel obligated to do my best to keep the liver and take the medications.
in the big picture, I still feel soooo much better even with the medications than I did before the surgery and have an overall good quality of life. Working is dicey due to sleeping and other issues, (was hospitalized with a septic infection last year) but, I am now doing some consulting and getting my Counselling credentials going again (I was an exec before the surgery- a very stressful job)
You can also expect a change in attitude after the surgery and have less tolerance for and postponing important things in life. I know I see each day as a gift and do not waste time with petty people and issues. I am not rude, I just would rather be by the ocean enjoying the nature here. I have even named the 2 eagles and a pair of humming birds that I see almost every day. I feel very happy and peaceful.
Ruby
I received a living donor transplant 10 years ago from my mother but I am now back on the waiting list. The living donor was much easier because I didn't have to wait to get sick. With the living donor I had never been hospitalized before the surgery and worked right up to that time. This past winter I was admitted to the hospital 7 different times and my MELD score is still only 21. If you haven't learned yet, the MELD score system oaten does not work well for people with PSC, so my advice would be to take the living donor transplant if you have the opportunity
So the bottom line seems to be, a lot can go wrong. Take your best shot when it comes up because you can not control outcome, no matter what kind of transplant you choose.
Rejection with PSC is a much bigger risk. The study below talks about everything that can go wrong. I think that mitigating rejection is as important as the fear of recurrence. They also are clear about being wary of findings based on low numbers as they do not seem to hold up.
I had a LDLT three years ago. I would have died without it - I mean I would not have lived long enough for a cadaveric doner, given my rarish bloodtype (B), and the doner stats in my area which aren't great. Here a B liver comes up once a year, and there are usually a dozen souls on the wait list. Of course if your dying you get bumped but remember the pattern of PSC is you are functioning and totally active/ineligeable and then you fall off a cliff. With one in a year , I wouldn't have lasted 3 months. Personally I went from being at work and relatively active (although fatigued) , to next day hospitalized, rushed onto the list , then languishing 3 months before kidney failure and they scheduled the surgery. They told me I had 2 days otherwise. A family member donated (they had been going through the tests for months at that point of course).
At first suggestion of live doner (back when I thought I had years not months), I wanted nothing to do with it. I can't even ask for directions let alone a vital organ from a loved one. God bless them, they (more than one volunteer) gave me no choice - and I owe my survival to them. so remember PSC can be a fall off a cliff one day type of disease, catching you and your dr's by surprise - don't kid yourself into thinking they know all. Frankly if they read this forum, even with appropriate scrutiny of information they would increase their PSC state- of -the- art understanding 3fold by my guestimate (some regions may vary). This forum is valuable.
So yes the facts support increased recurrance. In my case I had recurrance in 2 years. I worried for 2 hours and then I did something none of my dr's do, and did one of them so-called "google searches" - highly obscure search terms admittedly "PSC treatment", they can be forgiven for not coming up with those. Anywas I started on Vancomycin and all LFT's normalized, itching went away - and so far so good. So very good.
My family member had guts. Faced it without a thought. Became one of the 100% survival rate doner stats, and enjoyed hero status amongst many for about a year after. Free dinners, awards, a lot of personal satisfaction, and a respect gratitude and new special relationship from me that is a great gift for us both. I told her to wear her scar with pride.
Keep informed - don't shy from the technical papers, keep the dr's on their toes and you will be fine. Good Luck!
Thank you, everyone for your feedback, lots of Great information! Sadly we found out my sister is not a match as we have different blood types. I haven’t shared this information with the rest of the family just yet, I know others initially expressed interest in being tested, I guess I will let whomever voluntarily requests to be tested do so, but I don’t think I can bring myself to ask anyone. My hepatologist did discuss the risk of reoccurrence of PSC after transplant however he explained it to be the same no matter the type of transplant. Ruby, rjm, and ej, thank you for sharing your experience and I’m happy you all had succeful transplants and have been doing relatively well since. It helps me stay optimistic!
All other variable being equal, there should be a proportional supply and demand, regardless of bloodtype - your right. But there are wildcards in the statistical situation. Note that these are region specific depending on the medical rules at your institution, the donation rate culture, and ethnicity of that population (for which there is a blood type dependance), and the nature of our disease (that chestnut that PSC people, go from last minute finally qualifying to list to desperate in a few months (i.e.as opposed to people with a disease that allows them to be on thelist for years - with patience one will eventually come up). So specifically in my case, the medical policy was heavy on MELD score for qualification so I ended up with a 4 month window on the list, only 1 B liver comes up a year with dozen or so on waiting list for my area - therefore one in three chance one would come up before death. In my region, donation rate is less than other areas, but the disease rate is the same and the particular ethnicity in the area has a high need/proportion of B blood type - the, so B livers have less availability than demand. There is also a policy that universal O doners go to O's and not B's unless emergency. For PSC'ers emergency time it may be too late.
this information is accumulated wisdom, and few snippets for Drs/nurses on the floor -- not published stuff. So PSC's need to remember that Dr's don't know or factor in the fall of cliff nature of pSC, or all the above nuances of a PSCer with a rare boodtype - none were factored in when I got turned down for the list - because I looked fine- 5 months before I showed up a the hospital in toxic shock. Be armed with facts, press, ask the specific b liver availability/demand stats, ask for PSC handicap points for meld score, ask about local policy for giving you an O liver. Again, my factors were specific to my area (both individual hospital policies, and local population), other parts of the country are altogether differetn - if I had known all this unpublished information, I might have moved to another area to maximize my chances.
If you go downhill you will get encephalopathy (?) which leaves you in no mental state to fight your case. So do the nagging early and have a loved one with yu ,an advocate who can help you through. remember you will be fine, this is all just to help you survive with margin!
Dennis said:
HI rjm, I have some questions regarding bloodtype. Just like you, I also have bloodtype B (B+). Does this mean the liver donor also has to have B+ or is it also possible (just with a blood transfusion for B+ receivers) that the liver donor has B-, O+ or O- ? Also, I don't understand how a rare bloodtype would be a disadvantage. Should it not mean that, even tough there are less donors, there are also less patients on the waiting list for such a specific blood type donor?
Wyldflower, yes please stay optimistic as you said. Do more than that. Summon more guts, more will to perservere suffering than you've ever known. Hack it out one day at a time, and if it becomes necessary one minute at at time. I did it - I just kept living and living untill it embarrassed them enough to decide to get their thumb out. ( I suspect my region has different characteristics to many.). But even in the best regions, if luck does not line up, you can be waiting into the suffering stages, don't let your mind give up. Now, sitting here with my family, out sailing on the ocean today - in my worst times, towards the end, I could not have imagined now - but I kept going , like Joe Simpson in Touching the Void, because i knew in theory I would be thankful I did, and there would be good life again, and my boys needed a father not grief. Summon your resolve, and make the decision to kick its ass.
I had the same issue. My son was in Ottawa and I am in Victoria.
They really treat the donor well in BC. They see them as the heroes of the transplant world.
Check it out through the live donor coordinator at your hospital.
If I remember correctly, my son had a flight and a few nights accomodation covered in Vancouver.
Ruby
I am very close to having my living donor approved for donation for my transplant. It would be helpful to hear some discussion about the actual day of surgery. I have heard that they actually wait to start my surgery until they have removed my donors liver portion first. May I open this up to some input from you who have had a living donor liver to discuss that actual day of surgery. Ttake me for a walk through the day, time wise, etc. I'm trying to give my family a sense of waiting times for my brother who is the donor and for me the recipient, what to expect, etc. Thanks.
I received a living donor transplant to cure my PSC 31/2 years ago. PSC develops differently than other liver diseases and thus, does not make you as eligible for a cadaver liver as would cirrhosis caused by alcohol or hepatitis C. Living donor may become the only option that works for a PSC patient.
I was told that it averages only one in five people tested for compatibility as a donor actually are a match. They test people one at a time. It takes about a month for each person to be tested. Don't be discouraged if they are not a match. Keep sending volunteers to be tested. If you are having trouble finding family or close friends, Facebook is a way to widen the search to others who you know well and they know you well. The donor is going to have major surgery. It is very safe, but it has medical risks associated with recovery and can even be fatal. That is a hard thing to contemplate, but the donor will have their own set of doctors and surgeons that will not let him/her go ahead with the surgery if there is any doubts. You just have to trust God to work things out.
My actual day of surgery actually started the night before when you do not eat or drink after midnight. You will arrive early in the morning and get into a surgical gown, sign some final papers and then wait until you meet your anesthesiologist. I was on a gurney along side my donor and we chatted until they gave us a mild sedative. I vaguely remember being rolled into the operating room, but then nothing more until recovery.
My surgery took 12.5 hours. This is longer than normal because they had to re-section my small intestine and make a port for the bile duct to discharge from the liver. Surprises like this happen all the time to transplant surgeons. My surgeon said he did one that took 36 hours! Can you imagine that!! Your donor will probably be conscious and recovering long before you will. Once you are awake, you will be groggy while they start disconnecting tubes and wires from you.
The first week is very surreal. If you look in a mirror, you will see you have normal color. You will be in and out of sleep. They will be taking you places for imaging and testing all the time. They will have you up on your feet the same day you come out of unconsciousness. You learn to cope with discomfort. Pain was not an issue, but not a big thing, to me. Gradually, you regain strength and feel you are getting back into the land of the living.
Expect it to take longer by several months to recover from a living donor transplant. Cadaver liver transplants usually get a complete liver that goes on-line right away. Your live donor liver graft is about 2/3rds of a normal liver and takes time and energy to grow back to normal. You feel better than you did with PSC right away, but it takes about 6 months for the new liver to grow and fully function.
Thanks Paul for those words of encouragement. Everything my brother has been hearing to date shows that it looks pretty good to being approved. Hopefully we will hear something before the days out. This old liver doesn't have much time it seems. Thank God He has his hand upon the throttle of our lives.
Mark
Paul Hain said:
I received a living donor transplant to cure my PSC 31/2 years ago. PSC develops differently than other liver diseases and thus, does not make you as eligible for a cadaver liver as would cirrhosis caused by alcohol or hepatitis C. Living donor may become the only option that works for a PSC patient.
I was told that it averages only one in five people tested for compatibility as a donor actually are a match. They test people one at a time. It takes about a month for each person to be tested. Don't be discouraged if they are not a match. Keep sending volunteers to be tested. If you are having trouble finding family or close friends, Facebook is a way to widen the search to others who you know well and they know you well. The donor is going to have major surgery. It is very safe, but it has medical risks associated with recovery and can even be fatal. That is a hard thing to contemplate, but the donor will have their own set of doctors and surgeons that will not let him/her go ahead with the surgery if there is any doubts. You just have to trust God to work things out.
My actual day of surgery actually started the night before when you do not eat or drink after midnight. You will arrive early in the morning and get into a surgical gown, sign some final papers and then wait until you meet your anesthesiologist. I was on a gurney along side my donor and we chatted until they gave us a mild sedative. I vaguely remember being rolled into the operating room, but then nothing more until recovery.
My surgery took 12.5 hours. This is longer than normal because they had to re-section my small intestine and make a port for the bile duct to discharge from the liver. Surprises like this happen all the time to transplant surgeons. My surgeon said he did one that took 36 hours! Can you imagine that!! Your donor will probably be conscious and recovering long before you will. Once you are awake, you will be groggy while they start disconnecting tubes and wires from you.
The first week is very surreal. If you look in a mirror, you will see you have normal color. You will be in and out of sleep. They will be taking you places for imaging and testing all the time. They will have you up on your feet the same day you come out of unconsciousness. You learn to cope with discomfort. Pain was not an issue, but not a big thing, to me. Gradually, you regain strength and feel you are getting back into the land of the living.
fcmmark I wish you all the best and I pray your brother is a match for you! Since my last update I have had several family members step up to be tested, the hospital I am receiving care at actually tests more than one person at a time, so far 2 of my cousins have made it past the preliminary tests, one of them is in another state and they have been working with him to get as much done as possible where he lives to avoid costly flights here just to do testing. Since my last update I had to be hospitalized again for a blockage, which they where able to stent. It’s the same area I had just had stented 2 months prior so we definitely weren’t expecting it to block off again so quickly. I will have this one removed at the end of the month and hopefully it last a little longer! Other than that things are going well, and it helps to read all the wonderful success stories on here! Everybody stay strong out there!
Thank you WyldFlower for your reply to my post. I do hope you find a living donor match soon and can have your transplant.
Unfortunately, we found out yesterday that although my brother was a match, there was a blood vessel that would have made the resection of his liver very dangerous and life threatening, so they had to disqualify him as a donor. It has been quite a let down, but I know the Lord has a perfect match for me somewhere. I have a few potential living donors and still hope for a deceased donor though they are very difficult to get here with a MELD of 19. Perhaps one day UNOS will re do their point system to allow extra points for patients with PSC. Until then we watch and pray.
Mark - so sorry to hear things did not work out for your brother to be a donor. Hoping you will have some good news soon re the other potential donors.
One can only hope that UNOS will get their act together with their rigid point system where PSC is concerned.