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Primary Sclerosing Cholangitis (PSC)

Transplants | Last Active: Mar 23, 2020 | Replies (89)

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26 Sept for 4 Days. They told me I wouldn't leave their hospital until I was absolutely sure of their plans

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Replies to "26 Sept for 4 Days. They told me I wouldn't leave their hospital until I was..."

@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

@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.

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