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Liver disease itching: What helps?

Transplants | Last Active: Nov 22, 2023 | Replies (155)
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@chuckg

Hi, @rosemarya. I was diagnosed with PSC in 2005. From that time until around 2020 I was coping and managing PSC with the usual drug regiment. I had a pretty bad bleed esophageal in Colorado (on vacation) and had an emergency banding done.

With that episode it was time to go to Duke transplant clinic. I had developed some scaring on the liver and it was determined that autoimmune hepatitis was causing that. Add inguinal hernia on right side below liver-diagnosed a few months back to the mix. Said there's a 13% chance for liver decomposation.

I am currently working to get stronger and get BMI down. Also will see a denist for a recommended deep clean. Plus other to do items such as an upcoming MRCP, EGD and some 34 lab test.
My current MELD is 17 and I have the listing which will be done in late October. I hope the listing is successful. When is accepted, then take care of hernia.

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Replies to "Hi, @rosemarya. I was diagnosed with PSC in 2005. From that time until around 2020 I..."
Rosemary, Volunteer Mentor | @rosemarya | Jul 25, 2023

Hi, @chuckg. I lived with my PSC diagnosis for around 8 years before my liver began to exhibit signs of cirrhosis. I had checkups and labs every 3 months from a wonderful GI who guided me until my symptoms and MELD indicated that I was ready for evaluation and placement on the UNOS liver transplant waiting list. That is when I began to develop complications and and was sent from Kentucky to Mayo in Rochester. In 2009 I received a simultaneous liver and kidney transplant from an anonymous deceased donor. My journey was like an out-of-control roller coaster, but my transplant team treated me and guided me to where I am today.
I can see that you are in a good place for good care, and it sounds like you are (in the words of my GI) getting things in order so that you will be ready when the time comes! Chuck, I want to encourage you to keep on taking care of yourself and following your doctors' advice as you proceed further toward the listing and eventual transplant.
I joined Connect because I was looking for someone/anyone who had PSC and a transplant. I am happy to meet you, and I want to let you know that I am a transplant recipient who had PSC, and I am living a healthy and active life!!

I will be thinking of you as your October evaluation approaches. And I am available to answer any questions or concerns that you or your caregiver might have. Do you have any questions?

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