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jacinta (@jacinta)

Primary Sclerosing Cholangitis (PSC)

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

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@jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately, because PSC is the reason for my transplant in 2009 at Mayo, Rochester. My donor was an anonymous deceased donor.

I would like to share the following link with you. You can access the living donor and living recipient toolkits that contain the Mayo Clinic information for living donation.
I want to let you know that I am happy that you have an appointment at Mayo. Mayo Clinic is the expert for PSC – Primary Sclerosing Cholangitis. My local transplant team sent me to Mayo in Rochester when complications developed that they could not diagnose locally.

I can honestly say that you will have ample opportunity to discuss the living transplant issue with them.

Are you currently on the transplant list? When is your appointment?

I look forward to reading what others, who have had living donation have to say.

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Replies to "@Jacinta, Hi Jacinta, and welcome to Connect. The title of your discussion caught my eye immediately,..."

I have a Donor. I was to have the surgery on the 16th August, but a few people that I got to know were disappointed with my the hospital, both with the surgery and the after care was horrific according to those individuals. Others that had it done encouraged me to go to Mayo Clinic. They said they were the best and

Hi jacinta,
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 !

@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,

Your response makes me feel great. I have my appointment rescheduled for 30 October. I do have a Donor ready to go

Before I retired from work , I would take a basket of candy and give it out and tell new people my story! And I always called my son , my donor and thanked him for my life ! A lot of times I give him a gift !
Since retirement, I talk to a coordinator and ask them to thank everyone at the Mayo Phoenix! Still call my son !

@sandyblair, That is a wonderful act of kindness that you are doing by sharing your blessing with others. I am sure that they enjoy the candy! And I know that your story is amazing – and will encourage other people to think about Living Donation.

I wish that I had known you back in 2001. I did not know anyone with PSC, and I did not know anyone with an organ donation. You would have been able to help me understand what I was going thru. But, I am happy to meet you now, and I getting to know you.

@sandyblair, I want to share a helpful hint with you in case you want to direct your reply to a particular person. Just highlight their @name, then do a copy then past in the reply box. It took me a little practice before I could do it because my hands still get shaky from my meds.

Do you get shaky or have the trembles after taking your transplant medications?


It is a blessing to get to share my story ! I have been on Prograf since 2001 and have never had any side affects ! What do you take ?

You make me feel good about going to Mayo and accepting that I may need the surgery. Plus you had it done 2001, which means that surgeries have come along way since then. . . Meaning even more success.

Thank You

@jacinta, I hope that you will find the answers that you are looking for when you visit Mayo. If you take your questions, they will be able to give you answers. I am also happy that our members have been able to help you to feel better about your surgery.
I continue to learn and to be amazed by the inspiring stories shared by out members. I hope to hear more from you.
Sending you a hug and prayers for your journey,

Thank You so much. Im on the bus to Rochester from the Airport