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Primary Sclerosing Cholangitis (PSC) - Online Support Group

My Upcoming Transplant

Hi all, I’m Tobin, and after using this site as an information resource for the last year or so, I’ve decided to officially join. I’ve been diagnosed for almost 2 years with PSC, and UNOS listed just in April. I have been experiencing the usual and initially mild but increasing/accelerating symptoms of fatigue, weight loss, minor itching, edema, portal hypertension with very depressed platelette count/splenomegaly, and feeling cold all the time after a lifetime of being the year round shorts and t-shirt guy. I also have a relatively rare blood type (B+) and that may explain why, with a current MELD of 16, I got my first call today to come in and serve as a backup candidate for a donor liver. My family and I have had some time to prepare mentally and emotionally and get ourselves educated, so I guess it is time to put that all to the test. I have really appreciated the information and sharing of experiences and perspectives from this site, so thanks to all.

Tobin,
It’s good to hear from you and know that you are listed for transplant. Your symptoms are certainly normal for a person at this stage of progression with PSC. Do keep a close eye on your labs over the next few months. Mine jumped from 19 to 36 in just 3 months so it’s important at this stage to stay on top of things. I hope you get that perfect liver soon my friend. Do keep in touch and let us know how you are doing. We are here for you if you have any need or questions.

Mark
PSC 2011 / Liver Transplant 2015

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Tobin, you said some thing that is key for those who are close to a transplant-prepare mentally and emotionally. Having that mindset will make what you go through much better. I am not going to say easy.

I think you’re right about the B+. I am also B+ and had been told it is pretty uncommon, which meant less people needing them but on the downside, fewer livers.

With a meld score of 18 and a rotten spring 2017, my doc was able to get 4 exception points so that my meld was 22. I was transplanted within a month of getting to the top of the list. So we tend to be transplanted at a lower meld score.

Well, it happened much faster that I could have ever expected or hoped for. I received my transplant on Fathers Day and boy was it the best Fathers Day gift I’ve ever gotten. I’ve been home for a week now, and liver is doing great with a post transplant ERCP stent placement at the bile duct anastomoses. My challenge now is hepatopulmonary syndrome, which is a relatively rare and totally reversible condition causing poor oxygenation of the blood as it passes through the lungs. Anyone had any pre or post transplant experience with HPS?

Tobin,
So glad to hear that you received your life-saving transplant. Congratulations!!!

I don’t have any experience with this hepatopulmonary syndrome. Hopefully someone here will have some ideas for you. Glad you are home now and I hope things will continue to improve day by day. Try and get in a little walking every day to keep that scar tissue from hurting too much. Life will begin to greatly improve day by passing day. We are all very thankful that you have been given this precious gift of life.

Mark

Tobin, glad you got your transplant. Good luck getting through the homestretch of getting back to the real you.

Post-transplant

Post-transplant update - I am 8 weeks post-surgery now, and coming up on a week with no supplemental oxygen needs from my hepatopulmonary syndrome. I have my appetite back, and am past the phase where my team is concerned about me losing weight and threatening me with a feeding tube. I feel like I am really getting back to normal - better than pre-transplant normal for sure. Still a process ahead for me, regaining fitness, returning to work, etc., but I am filled with gratitude for my donor and their family, my transplant team, and my own family and friends who continue to support me through my recovery. My transplant program at the Univ. of Washington has a pre and post support group that meets twice a month, and I have been attending for about 8 months and continue to go. If any members have access to something like this at their transplant hospital, I can’t tell you how beneficial it has been for me. The post people really helped my understand and prepare for the surgery and recovery in ways you just don’t get from the docs - the good, bad, and ugly. And seeing people who have gone through it and are leading normal healthy lives 5, 10, even 20 years out makes it all seem really possible and way less scary. On we go!

Tobataska,
What great news to hear you have had your transplant and are 8 weeks out! Wonderful. I’m glad you shared about the patient support group. These are far and few between in many transplant centers. I’m thankful you had that opportunity while planning for your surgery and even afterwards. This is one of the reasons I have tried to contribute so much to this forum. Patients go into PSC and don’t have the tools and information they need to live life without fear and hopelessness. I hope you will continue to be a part of the forum with us and contribute to the conversation as you are able. I just finished my year 4 last month. What a precious gift we have received. Take care and many blessings to you and your family in the days ahead.

Mark

Mark,

Thanks for your kind words. I realized this content would be better categorized in the transplant section - is there a way to reclassify the topic thread?

Thanks,

Tobin

Tobin,
I renamed it My Upcoming Transplant and moved it to the Transplant category. Thanks

Mark