What physicians are part of your transplant follow-up care?

Posted by cinheart @cinheart, Dec 25, 2024

What follow up physicians are part of your care? I am having issues that are not being addressed by surgical team. Went for second opinion only (consult only) and they came to the conclusion liver is doing great but possible side effects from cellcept including headaches, shortness of breath, fatigue and a huge belly (I mean looking like last term pregnancy) filled with gas with pain. All of these issues have not been resolved or even discussed by transplant team. I have walked, exercised, plenty of water, good diet. Cannot even take walks now. Has anyone experienced
these issues? Taking cellcept, cyclosporine, prednisone. These issues have caused quality of life issues and impeding my recovery. Thank you. I have just joined group this evening. Hoping you all are having a wonderful Christmas! Oh by the way typing awful from tremors, apologies.

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Thank you for sharing and the encouragement. Your statement, "Don't let your transplant define you," is particularly poignant. I've shared the advice with others who have suffered tragic life events, but not to me! Maybe it's because I don't see my transplant as tragic? At any rate, a redefinition is in order. Refinding myself is going to be an interesting adventure.

Happy New Year!

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Hi, David! Indeed, your transplant is not tragic, it is a Gift of Life. Think back of who you were before getting sick and have fun re-inventing a better version of yourself, older - wiser and above all a survivor. We go through a lot before we arrive to needing and being approved for a transplant and then helping our bodies re-learn to function in harmony, the way it is supposed to be. After the surgery and onward? baby steps. Try to have fun as you make new life choices. The canvas is a little crumpled from past experiences but very usable for new strokes of life, color, friendships. The people around you need to learn that you are not the same person as before, when you were sick. Drag them along in your new journey. One year, that is awesome!

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@cromme50

Your post resonates big time! I am 26 years out and you took me back to earlier days. A couple of things that helped me in the earlier days - hearing a psychologist tell me "do not let the transplant define you, do not let it change the person you were before, prior to liver disease".
Hard to do because liver disease is slow and it takes years to get sick enough to be eligible for a transplant. We lose ourselves over the years. It took a couple of years but I did go back to riding horses and having a good life.
The other help for me were postings form a heart transplant recipient who ended up aggregating his writings into an unpretentious but wonderful online free book. Here is the link:
https://www.rjwitte.com/changeofheart/GiftFromTheHeart/
You might pick and choose what to read, which article description speaks to you. Something quite touching about this man/author is that he met the mother of the young man who was the donor and they ended up marrying. Isn't that touching?

What I learned from that is that we have to get out of our own way, out of our heads and overthinking it and start participating in other lives - family, animals or otherwise - because there is a whole world out there , outside of our liver disease and transplant - waiting for us to participate and contribute. The novelty and the extra attention wear out and the world does not wait for us. Jump on the wagon or be left behind.
Please celebrate your upcoming one year anniversary, say a prayer for yourself, your donor and family and please tackle those challenges. Yes, there are a few but.....you can do this! Please, keep your wonderful sense of humor along the journey.....it helps!

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Hi, @cromme50.
Great post! First of all, congratulations on 26 years post liver transplant. I am one year post kidney transplant and, day by day, I am slowly learning to embrace your psychologist's words: "do not let the transplant define you, do not let it change the person you were before, prior to liver disease." That's excellent advice for everyone that's undergone a transplant. It has apparently served you well for 26 years.

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Hello

A liver transplant is a God’s gift and a second chance at life. Once you are out of the operating room, you become a brand new person. It is entirely different and one must get used to the adjustments. As for me, I am a 6-year post liver transplant patient. I take the rejection medication like clockwork with no exceptions—every 12 hours. There is a major adjustment in food intake: only fiber, nothing else. No soda, salt and sugar. Fast food, albeit tempting, is a thing of the past. I work out every day with medium impact exercises to build my muscles. Sounds funny, but this advice came directly from the hospital in Charlottesville, VA, UVA. I live in Florida but go to VA every year for consultation and further discussion. My monthly blood work is great, and recently the hospital required me to get a liver scan to check for any anomalies. The analysis was great. In my case, I was blessed to have a young lady who gave me part of her liver so that I could survive. Do not lose hope. Have faith and make the most of it. This is your life. I take it one day at a time. Sometimes, I feel that I will not make it to the bathroom. Yet, I am still around. Consult your hepatologist often. He is the one who can perform miracles. All the best.

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