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

Discussion
Comment receiving replies
@glover

Hi everyone,

I am 11 months post-transplant. I had a liver transplant at Mayo-Jacksonville. Here are a couple of thoughts that I hope help:

The transplant team may start with handling everything but gradually wean you off them and push you toward other professionals. In talking with my liver doctor during a four-month visit, he told me this and explained that our nurse manager's workload is something like 200 patients. Due to the volume of patients, they need to move us out of surgical care and into more general care. They have increased the number of managers in the Jacksonville department, which will help. Thank you, Mayo.

I blame the drugs for everything - weight gain, personality change, memory issues, anxiety, tremors, my favorite football team losing a game - everything! They all mess with body function, and our body function determines how we function as people. Some of it's conscious (I'm very wary of going out to eat), and some of it's not (forgetting that I put the chips into the shopping cart). At first, I was very frustrated and upset about my issues, but I've gradually moved toward how to overcome the side effects - just like I tried to overcome the symptoms of liver disease. You got this; keep going.

I watched a video a while ago where a doctor suggested that medical care focuses on functionality rather than wellness. I'm not saying that this theory is THE answer, only that it made sense to me in terms of my liver transplant. The team focuses on keeping my liver healthy so that it functions well and helps me live. I may not return to how things were when I was "healthy." It's probably why folks talk about "the new normal." Add this to the caseload of nurse managers, and it helps me cope with those issues where I feel like I'm not being heard.

That's not to say that I'm not being listened to by some doctors. I keep trying to remember for me (us), the transplant was a significant life event that will impact everything that I will do for the rest of my days. For the medical team, it's Saturday. I'm not saying they do not understand the weight of their work because I wholeheartedly believe that they do. However, it's their job/life to do this work. Hopefully, we only need to do this once. The differences in perspectives clash sometimes. However, I get stuck when I feel that the doctor does not hold my health/well-being in the same regard as I do. I'm changing PCP because of it and trying to work things out with my GI doctor. Again, this is my current thinking in my drug-drenched brain! 🙂

The hardest part of the transplant, I believe, is the recovery. The hazing to get listed is brutal but relatively short. The waiting to get an organ can be awful, regardless of the time. But the rest of my time on the planet is the recovery, and I must be active to overcome the challenges. We absolutely can do this. We have made it this far and can make it through the challenges of recovery.

Good luck, everyone! and Happy New Year!

Dave

Jump to this post


Replies to "Hi everyone, I am 11 months post-transplant. I had a liver transplant at Mayo-Jacksonville. Here are..."

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!