Hi everyone. My name is Ed and I was diagnosed with PSC at the age of 14 in 1994. 10 years ago I had my first transplant which was a living donor transplant from my mother. That surgery was in Pittsburgh. Before the transplant I felt fine, and they were able to schedule the surgery before I experienced many symptoms. For 8 years everything went very well, but about 2 years ago the PSC returned and I am now on the waiting list for a second transplant. This time I have experienced many of the symptoms that other discuss and it has been a completely new experience for me. Since the first transplant I have also gotten married and have a son who is almost 2 which definitely raises my anxiety level going through all of this. I currently live in New England and my doctors are at Mass General Hospital, but in May I am headed to Mayo in Jax to be evaluated and hopefully be listed down there as well.
If anyone ever has questions I do have quite a bit of experience with different hospitals and doctors and different types of transplants. I also have UC so I can sympathize with that as well, although luckily my UC has never been a big problem. Please feel free to ask me any questions and I know I will be asking some of you questions along the way.
Just wondering, how come they did a transplant before you had any symptoms? Is this an option in the USA! Were you on any medications prior to transplant?
Hi Ed, I have been living with PSC for 9 years now and have 3 serious episodes of cholangitis which required hospitalizations and have been very symptomatic for the past 3 years rendering me disabled to work or do anything pretty much. My brother has always from the beginning told me to do the live donor transplant with him but until about 2 months ago I just couldn't bear the thought of making him or anyone go through that. Did you feel similarly before going through the live donor transplant with your mother? How is she doing now? Has she had any whether major or minor side effects or complications related to the transplant donation? I love my brother, he is very healthy no problems whatsoever, is a successful doctor, has a wife and 2 kids that havent even started school yet...and this is why I have been having so much trouble agreeing to take part of his liver.
Hi Ed, I would love to be able to give my daughter part of my liver. I'm going to ask her doctors tomorrow if this is possible. Archer your brother is amazing, its no wonder you love him so much. x
Hi Ed! Welcome! I’m glad you’re here as you may be able to answer some of our questions as well. I’m so sorry that you are having trouble again - bring a parent definitely does put a whole new light on how we face our illnesses and surgeries.
I have many of the same questions Archer has at this point. Any experience and insight
you have will be helpful!
Just wondering, how come they did a transplant before you had any symptoms? Is this an option in the USA! Were you on any medications prior to transplant?
Even though I was not experiencing any symptoms at the time, there were multiple lesions on my liver, and as they started to see more the risk of cancer was increasing. I also think the fact that I was young and fairly healthy made the surgery and recovery a little easier. There is another act to this that has to do with what they were doing at UPMC in Pittsburgh at the time that lead to multiple lawsuits and the director of the transplant program being let go, but I won’t get into all of that you can find the info online if you want.
Hi Ed, I have been living with PSC for 9 years now and have 3 serious episodes of cholangitis which required hospitalizations and have been very symptomatic for the past 3 years rendering me disabled to work or do anything pretty much. My brother has always from the beginning told me to do the live donor transplant with him but until about 2 months ago I just couldn't bear the thought of making him or anyone go through that. Did you feel similarly before going through the live donor transplant with your mother? How is she doing now? Has she had any whether major or minor side effects or complications related to the transplant donation? I love my brother, he is very healthy no problems whatsoever, is a successful doctor, has a wife and 2 kids that havent even started school yet...and this is why I have been having so much trouble agreeing to take part of his liver.
This is a hard question. When I had my transplant I was 24 and my mother said she was going to do it if she was a suitable match, so there really wasn’t much discussion. Now that I am married and have a son of my own I completely understand where you are coming from.
As far as my mother she made it through the operation very well. She was in the hospital about a week then got out and began the slow recovery. Most of the recovery process for the donor revolved around the stress of the surgery and the size of the scar. For someone working a full time job, I would think the recovery would be 2-3 months before they start to feel normal again. The liver generally does pretty well with the operation and actually regenerates fairly quickly. To answer your question, my mother did not experience any complications and the follow up was mostly labs and imaging. I’m sure every hospital does it differently, and its probably differently now than it was 10 years ago, but if you have other questions please ask. Now that I am back on the waiting list and am going through the stress of never knowing what’s going to happen next week or month, I can tell you the living donor transplant eliminates a lot of that stress. Good lick to you and your bother on your decision.
Thanks for sharing that with me, my doctors had explained to me it is completely safe for the donor but it means so much more coming from a patient. Wish you the best.
My daughter was in the Vanco study a couple years back. We had to take her out due to the cost of the Vanco here in Canada.
We want her back on, but her GI here isn’t so sure about it.
He did and MRCP last week to see her liver as it hasn’t been checked for over three years.
We are waiting for the results.