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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

1 Like

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

Quick update - I am about 14 weeks post transplant. My new liver is doing all the things that livers do, and I’ve been discharged from the post-transplant clinic. Of course, the UWMC will monitor me and manage my care for my whole life, but I don’t have to see a hepatologist again until December. I started back to work last week, and this weekend my family and I were able to keep our annual tradition of attending the state fair - in the rain of course.

Take care,
Tobin

Tobin,

Wonderful news. So glad that your transplant did so well and that you are back to work. Just one little tip, one way I have found to keep from getting sick with colds, etc. is to avoid shaking hands as much as possible with people. And if you do, to use hand sanitizer or wash them soon after. As I often tell folks at church, it’s not that you are sick, but possibly someone whose hand you shook today may be sick and that be passed on to me. It’s so critical to maintaining good handwashing hygiene being on immune suppression. I have had issues in the wintertime with getting bronchial infections from time to time, but my pulmonologist helps me keep that under control and this summer has been uneventful. I never had issues like that before transplant, but with immune suppression, things will happen.

I encourage you to stay as active as you wish in the group. There’s much I’m sure you could contribute to those going through the same battles you have gone through. The very best to you and your family.

Tobin, I am glad you’re getting your live back in order. Being able to do that made me appreciate things a lot more and differently. I try to take nothing for granted.

Glad it’w working well for you.
Jeff

Tobin, thanks for sharing your transplant story. I am at the beginning stages of getting my mind wrapped around possibly having to get a transplant due to increased PSC volatility. Your story makes me feel positive about my future moving towards a transplant except for the fact that it appears to include a very long time to recover. I’m relatively young with very young children and it scares me silly being out of work for 2-3 months and or not being there for my children.

GlasshalfFULL,
If you do well through a transplant you don’t necessarily have to be out of work 2 to 3 months post-transplant. It depends of course on many factors including how physically weak you are going into surgery, etc. As a younger man hopefully you can get back on your feet much sooner. I was able to return to work for 2 hours a day desk work 30 days after my surgery. Over the next 3 months I gradually increased my number of hours. Depending on the type of work you do your time back to full time work status may be shorter or longer. Don’t let this discourage you. You will feel like a new man hopefully after surgery and be ready to take on the world!

Mark

I agree with Mark; three months was the right window for me, but I had pretty serious post-transplant issues with my lungs. If not for that I would have easily have shaved a month off of that. Although we shouldn’t soft pedal the reality of recovery, and the need to have a really supportive caregiver in the early days at home, the truth is you are very likely to feel much better after your transplant than before in many ways, even in the first days. I know PSC can be a tough road - hang in there!