Primary Sclerosing Cholangitis (PSC)

Posted by jacinta @jacinta, Aug 21, 2017

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.

Jacinta

@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.
https://connect.mayoclinic.org/page/transplant/
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.
Rosemary

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@rosemarya

@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.
https://connect.mayoclinic.org/page/transplant/
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.
Rosemary

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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

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@jacinta, I remember when I heard of my diagnosis of PSC, I thought that my world was falling apart. I had never even heard of it. And since I felt ‘normal’ I was completely confused, as well as frightened.

How long have you had this diagnosis? How are you feeling?

Please let me know if I can be of any assistance with PSC questions.
Rosemary

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I have in since 1989. I have had many ERCPs over the years. The worst part is the constant scratching with no relief

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@jacinta

I have in since 1989. I have had many ERCPs over the years. The worst part is the constant scratching with no relief

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I know that we are all different, and I had a deceased donor liver, but I will share that I had very good surgery results and great follow-up at Mayo. I was in hospital for 6 days after surgery. And on my way home (800 miles) on post transplant day 21. They are used to doing post transplant monitoring from a distance, and it is very satisfactory for us.

I hope that all proceeds smoothly for you. When is your appointment?
Rosemary

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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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@jacinta, That sounds great. You can get all your answers, and go home with a plan!

If you will be traveling and need lodging for your transplant, I recommend that you look into the transplant housing that is available at each of the three Mayo Campuses. I was in Rochester. My husband and I stayed at Gift of Life House. I’ll send links if you need them.
Rosemary

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@jacinta, Here is a link to a featured patient with PSC and living donor. You can find her full story there. Very inspiring!
https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/
Rosemary

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@rosemarya

@jacinta, Here is a link to a featured patient with PSC and living donor. You can find her full story there. Very inspiring!
https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/
Rosemary

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Rosemary. Thanks for all your help on this website. I'm not really good at navigating around it 

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@rosemarya

@jacinta, Here is a link to a featured patient with PSC and living donor. You can find her full story there. Very inspiring!
https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/
Rosemary

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@jacinta, It is my pleasure to help you. I am actually extremely happy to meet, you, another person with PSC. (although I am sorry that you have it) I felt completely alone with the diagnosis. It wasn’t until I was became a patient at Mayo that I realized that I was not the only one with it, and that the doctors were experienced with it. too. It is 8 years since my transplant, and the only people who I have encountered are here on Connect.

-If you want to navigate the site, there is a dark grey area at the bottom of this page. And if you click on the “Get Started on Connect” you will find some helpful tips and directions. https://connect.mayoclinic.org/get-started-on-connect/

-Another easy way is to click on the DISCUSS label on the top left.
-You can click GROUPS -which lists all of our discussion groups, even Transplant. You can scroll thru the ongoing discussions, and join in, or simply read.
or
-You can click on PAGES and you can access the many related Pages that are written by the staff. I sent you the Transplant page yesterday.

We are here on Connect to support each other and to share from our experiences. I want you to feel welcome here with any questions or comments.
I am trying to imagine your disappointment at having passed your scheduled original surgery date. I hope that the next month passes easily for you. From my experience, time almost stood still as I was waiting for the Call for my transplant. I look forward to learning from you about the living donation process. Which Mayo Campus are you going to go to? How are you feeling?

Rosemary

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@jacinta

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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@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?
JK

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@jacinta

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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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

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