Primary Sclerosing Cholangitis (PSC)
I’m told I need to have a partial liver transplant. I do have a Donor. My question is: should I get a second opinion ? I have an appointment with Mayo Clinic. I heard that they are the best.
I’d love to hear from people that had the partial liver transplant. Are you glad that you had it done? And are you getting a better quality of life.
Interested in more discussions like this? Go to the Transplants Support Group.
@jacinta Hi Jacinta, you must feel a huge amount of relief to have an appointment approaching quickly and to know that you will have a plan soon. I know nothing about Primary Sclerosing Cholangitis, my transplant at Mass General was due to non-alcoholic cirrhosis. MGH too is a wonderful transplant center. My “transplantiversary” will be on September 23. I had one of my regular check-ups with my surgeon yesterday and that’s always a pleasure! He is very pleased to see how well I am doing and how enthusiastic I am about life at this point. I told him that I was just thinking about everything the day before and how a year ago I was so miserable so now it’s amazing how much I am doing and keeping very busy. I think my great recovery had a lot to do with attitude, I wanted to get back to living my life as soon as possible, so stay positive and embrace every opportunity you can to do things that give you pleasure, both now and after transplant.
Had MGH not come through soon with a transplant I was prepared to list at Mayo too. I know how great Mayo is but MGH is also really excellent and only one to two hours away driving. That depends on the time of the day.
Looking forward to hearing how things progress for you. I am sorry you have such a miserable condition but happy for you that you are now on the way to getting better. With PSC do they also use a MELD score to determine where you rank among transplant candidates?
Thank You so much for your kind thoughts. I’m not a drinker either, don’t eat meat, have lived a healthy and active life and it just happened to me
I was also diagnosed with primary sclerosing cholangitis at the Mayo Clinic ! I received a live donor liver on 9-10-2001, 16 years ago today ! It was instant success ! The surgeons , all of the staff at Mayo Clinic in Phoenix are excellent at what they do !
I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the surgeons and Transplant Center are top notch. I have been at Mayo Clinic since 2008.
I want to let you know that there is a nonprofit out there with excellent patient support and drive to find a cure. They have funded over $2 million in research, including some grants to Mayo Clinic. One of those research projects is now combining with the U.K. PSC Research Team to create a bigger pool of patient demographics to help find a cure. PSC Partners Seeking a Cure is a wonderful group and they happen to be leading an awareness campaign that started today. It’s PSC Week from Sept. 10-16. Please check out this nonprofit. You can ask me if you have any questions. There is a wonderful PSC family there.
My transplant involved a deceased donor, but I know a few people who have recently had living donor transplants and are doing well.
I wish you the best and please continue to ask questions.
Julianne (in Minnesota)
@sandyblair, Happy Belated Transplantiversary!
I was on vacation, and that is why I’m just now responding. 16 years is pretty amazing! And your son is amazing, too. I cannot think of a better act of selfless love that what he gave to you. Your son fits the real definition of a hero.
I want to welcome you to Mayo Connect. I am a liver/kidney transplant recipient (2009) at Mayo, Rochester. I also was diagnosed with PSC. In fact, I was diagnosed right about the time you received your transplant. As a mentor, I have the unique honor to meet persons like yourself, who have been blessed with a new life and hope through the gift of organ donation. My donor was an anonymous deceased donor and I honor his gift everyday by taking care of myself and by promoting organ donation whenever I can.
I invite you to become an active member of our community. I know that there are people who can be inspired by hearing about your experience.
Since you have recently celebrated your anniversary, I am including the link to “Happy Transplantiversary”
How do you celebrate your transplant anniversary?
I look forward to hearing more about your transplant experience,
@jacinta, I’m sending my thoughts and my prayers. I hope that your visit and appointments go well for you this week. You are in good hands at Mayo.
Rosemary – remember that we are here and we will be happy to walk with you and help you by sharing our experiences.
Your response makes me feel great. I have my appointment rescheduled for 30 October. I do have a Donor ready to go
I have it since 1989. I’ve been very sick over the years.
I rescheduled my appointment for 30 October
Yes, they do a MELD score and I didn’t qualify for a full Liver Transplant. I was advised to go for the partial liver transplant. I have a Donor ready to go.
I just needed a second opinion and that’s why I contacted and set up an appointment with Mayo Clinic
Clinic at Rochester