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Primary Sclerosing Cholangitis (PSC)

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

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Hi Jacinta,

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)

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Replies to "Hi Jacinta, I had my transplant for PSC 2.5 years ago. Besides the wonderful hepatologists, the..."

Welcome to Connect, @monty49. We would love to hear more about your transplant story. Perhaps you could share it on this discussion thread:

- At home with my new liver transplant https://connect.mayoclinic.org/discussion/at-home-with-my-new-liver-transplant/

@monty49, Hi Julianne. I extend a delayed Welcome to Mayo Connect. I am thrilled to see that you have joined this conversation about PSC. Congratulations on your transplant!

I, too received my transplant at Mayo, Rochester (2009) I was sent to Mayo from Kentucky because of the complications that developed with my PSC. They are the #1 experts for PSC.

When I was first diagnosed with PSC, I was frightened, and alone. I would have welcomed the opportunity to chat with people like yourself. So, I invite you to look thru our discussion threads, and share any information that you are comfortable to share.

Julianne, we have recently experienced an increase in activity relating to PSC. Would you mind sharing the link to the PSC Partners group?

How has your life changed since your transplant?

I was diagnosed with PSC also ! Diagnose in 1993 ! Liver transplant 2001 , Live donor , my23 year old son !
It has been an amazing journey , a couple of valleys but have done so well for most of it ! God has truly blessed me !

@sandyblair, Good Morning! I feel like I'm answering the phone - your message popped up just now. I am smiling, and feel such peace and happiness right now because of your reply. Thank youI

What are a few of the blessings that you have experienced as a result of your son's loving living liver donation?

I look forward to hearing from you.

I had 3 grandkids when I had my transplant in 2001 ! I now have 10 grandchildren and have watched them grow ! The oldest is 17 and a senior in high school ! The youngest are 3 year olds , 2 of them , separate parents !
I have traveled with sisters on trips we call sisters reunions !
I have worked til I retired in 2014 at Walmart amidst being exposed to possible germs ! I have truly been blessed !

@sandyblair, You are amazing! So many beautiful grandchildren to enjoy. I have 1 granddaughter who will be 5 in December. My son, her dad/mom got married 4 months after my transplant in 2009. One of my blessings was to get to be at the wedding.

I, too enjoy travel now that I am well and we have retired. We like to hike, and we plan our visits to the National Parks. Where do you and your sisters like to go for your sisters reunions?