Hello my dear friends
Is there a chance for us out here that we can get living donor transplant before our conditions get worse or any biliary cholangiocarcinoma? I have heard on the latter case surgeons won’t even perform transplantation.
What are the best places in USA for living donor transplantation ?
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Sami,
Regarding living donation opportunities. There is a certain criteria of people that the transplant program will allow to be living donors for you. It’s not so much the best place in the country to get living donors, for they have to be someone you know well and often have to be a realtive or close friend or co-worker. Then not all transplant centers do living donor transplants so you would need to research that. If you give me the state you are living in I’d be glad to check out transplant centers in your state and surrounding. Here’s a link where you can find out more about the living donor process and how it works. Also, most major medical insurance companies will pay for the living donors medical expenses surrounding the transplant and their recovery. Hope this helps.
https://unos.org/donation/living-donation/
Mark
Mark thanks for your response . I live in Northern VA very close to DC and Maryland. I have family members that would like to donate before my conditions get worse or any cancers. I don’t mind traveling anywhere as long as they are the best! I am very devastated I know I’m not in a bad shape now other than my severe colitis I’m on day 4 of antibiotics and just got discharged from George Town Hospital but I want to get transplant before I get very ill. I know I need to be strong but I’m having very difficult time.george Town Hospital told me they are not expert in adult transplantation mainly children. Thanks in advance . I don’t know what I would have done without this website specially you mark for being there for me and listening to me . God bless you all
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And when you got your transplant did they connect the new liver to your intestine to prevent further PSC recurrence ?
You may get PSC (recurrence) again with the new liver, about 20% chance of that.
Your current liver may be fine the next 30-40 years, and new treatment options may be available within next 5-10 years. [median time from diagnosis to transplant or death is about 21 years, according to largest ever PSC study, in the Netherlands]
Also, oral vancomycin is already being used by many patients so that their PSC progress has halted.
So I would be cautious about living donor too early.
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Hi Ted thanks for your response my friend . Question Even if they connect the new liver to the small intestines it will recur?? And my hepatologists ( I saw 4 already) didn’t even offer vancomycin. Is there any centers in US I can go that’s their doctors actually are prescribing vancomycin ?
Sami,
Yes, they did the Rou-in-Y procedure and redirected part of my colon so my ducts feed direct into the colon. They kept me on Prednisone for a year to prevent recurrence. Doing great!
Mark
Yes, I believe PSC can recur, no matter what/how transplant is done. Estimates vary between 15 and 35% or so.
Oral vancomycin: Stanford uni is the main place, but vanco has been prescribed by many doctors around the country (though sometimes only after consulting Stanford doc).
Search this forum for more info.
Hi Mark sorry to bother you . I have ERCP scheduled this wed at 1 and I’m freaking out about stents. Asked two doctors they both said they may use it. Would you please give me a call . I do need to speak with you. Sami xxx-xxx-xxxx. Thanks so much
Sami,
I may be wrong about this, but if your disease has not progressed much and you are not dealing with severe symptoms, I think it will be quite difficult to find a doctor willing to do a transplant. Although its a highly successful procedure, its still significant and serious. Most doctors will not do such a procedure until it is truly warranted.
Additionally, although I can’t cite the source, I am pretty sure the recurrence of PSC is higher with living donor transplants versus deceased donated livers.
I was 59 when my 21 year old son was diagnosed, and since the cut off for liver donation is 60, I asked our heptologist about doing a living donor transplant. He stopped me before I even finished the question, saying that he would never put anyone through such a surgery until it was necessary.
I know its hard to remain calm, but if your disease has not progressed significantly, you need to try and take a step back. You could go your whole life not needing a transplant, or your could go 20 years. In the meantime, there is significant research ongoing that may provide a cure, or an effective treatment long before you reach transplant stage.
My son has been on Vancomycin since early October, and we will get our 1st blood work Thanksgiving week. There has been very successful results with Vanco, so I urge you to read up on it and discuss with your heptologist.
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Sami,
I blocked out your phone number for your privacy. I saved the original message so if you need me to call again just let me know. It’s better to do a private message. Thanks!
Mark
Jace thanks so much for the info and also your positive words to give me hope. I pray each and everyday for everyone who is sick to be healed and for us affected with PSC to have a cure/medication that helps us get through this. I will ask my hepatologist on wed about Vancomycin.
Thanks Mark you are the BEST! God Bless
Hi Sami,
Transplants are a great thing but they carry significant risks in themselves. Not just with the procedure itself but also some of the potential complications associated with receipt of a new organ and the long term effects of anti rejection medication. Those in themselves can become life threatening. I can’t speak for the US, as i’m based in the UK, but I would be very surprised if any surgeon would undertake a transplant before it was necessary to do so.
I’m sorry if this isn’t what you wanted to hear. I certainly appreciate your concerns about cholangiocarcinoma and your desire to get something done gefore that becomes a problem. However, I wouldn’t want to give you false hope. The key thing is that your condition is actively monitored. That way should it become necessary to consider transplant, that will be picked up early.
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Northwestern Memorial Hospital in Chicago is one of the nations leading living donor transplant hospitals. There are others, but not all transplant hospitals do living donor transplants. Like many PSC patients, I had a low MELD number (18), but was very sick. I learned about living donor transplantation late in the game and found a donor through my daughter’s Facebook, “Help Paul find a donor.”
The doctors do the transplant when the health benefit to you is greater than the risks. They also monitor your surgery survival index. When everything indicates you need the transplant, your doctors will let you know. There is waiting and uncertainty with this process. You just have to do your best to get through the waiting.
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Sami,
Hello. I was just going back through some old posts and saw where you were going to have an ERCP in November. How did that turn out? You may have told me in another post but right now I can’t remember how things went.
I trust you and your family have a very blessed Christmas.
Mark