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

Hi, @cinheart, and Welcome to Mayo Connect. I am glad that you have joined the discussion where members who are patients share their experiences.
Thank you for the kind greeting and, by the way, I did have a wonderful Christmas with family. I hope that you were able to enjoy some happy time, inspite of your current physical discomfort. And, I do remember those tremors!
I received my transplant in 2009 at Mayo Clinic Rochester MN. Mayo's protocol was for my to follow-up at 4 months and then annually. Mayo monitors and manages all of my transplant related care. My local PCP takes care of everything else, and he cooperates with my transplant team about any meds he thinks I need. I hve routine labs drawn locally and they are sent to my transplant team who closely monitors my transplanted liver and kidney and adjusts meds when needed. I continue to communicate via the patient with my post transplant nurse. In the beginning, I used to contact nurse more often when I had concerns.

What kind of follow-up has your transplant team provided you? Cooperation and communication between patient, PCP, and transplant team is important so that we can return to a normal life, although the timing is going to be different for esch of us.
@cinheart, How long ago was your consult? Were these symptoms present at that time or are they getting worse? With what you are describing, I would encourage you to make another appointment to be seen at your transplant center. Take a list of all symptoms - visible (swelling abdomen) and the invisible ones. Tell them that you cannot take walks for exercise. Who do you have who can go with you?

I really want to hear from you.

I am just seven weeks post, and interested in this thread and your recovery. I do have mid back pain, leg cramps at night, blood pressure not coming down to my "old" normal, and some itching that has recently shown up. I am communicating with my wonderful post coordinator , but wondering how much of this is medication related OR how much of this is now showing up because I am slowly weening off Prednisone or adding new statin meds? The liver function and lab work has been good, but these symptoms are effecting my sleep and exercise = recovery. Trying to understand how we transition to cardiology, spine/back group, and pain management outside of transplant team. Thank you everyone for any input. I definitely don't want to complain as liver is doing well, and I am in a much better place now!

Hello and thank you for your kind response @rosemarya. I am happy to hear you had a wonderful Christmas. First and foremost congratulations on you and all others who have successful transplants and to those who are just entering this journey. Blessings to you all. After discharge from the hospital, I was seen 2X per week and am currently being seen 1X per month. I have little support within my home but have wonderful support outside the home given by family and a dear friend who has been my advocate with medical visits and my well-being. She is a precious gift.
EVERY TIME I go to my clinic appointment my concerns are not addressed. My advocate has tried to get them to address all concerns. And it appears to us that their only concern is the actual liver itself. I actually refer to myself as liver #268. They address nothing beyond the liver. Any side effects and quality of life issues are not addressed. I feel alone, sad, and frustrated. When I say alone I am saying I feel alone, I am feeling abandoned from the post op care. My coordinator does not even return my calls. I get recurring UTI's, when I call, I get NOTHING. I
I complained about the broken communication system, and I received even worse treatment. I did not choose the hospital as I was in imminent death to ALF and was flown to the nearest facility with a bed. They did an excellent job with the surgery itself but beyond that, the care has been more than disappointing. I really have no idea what to do. As I stated I went to a facility that agreed to give me a consultation, believes they found the issue as a bad reaction to cellcept. I have headaches, nausea and other gastric issues, constipation, dizziness, short of breath and the extended belly just to name a few. I have no quality of life. As said, my surgeon has been given these symptoms at EVERY appointment with no response. I have no idea how to have concerns addressed. I am beginning to fear the outcome if these issues are not addressed and become permanent. Thank you for consideration and kind response!

I am coming up almost four years post lung transplant, with the exception that mine was a double lung transplant. I have had bad side effects with prednisolone which caused problems with aggression, insatiable hunger and weight gain. I am lucky that in Australia I qualified for disability pension as it also caused type 2 diabetes therefore, I qualified for ozempic which helped address the hunger issues and weight gain but did nothing for the mood issues. I am on the lowest dose (5mg) but will be on it for the rest of my life. I dare say we would be on different anti-rejection medication as I am taking tacrolimus and everolimus, originally, I was taking mycophenolate but developed a melanoma, so they ceased mycophenolate and started me on everolimus.
Tacrolimus caused me to develop severe shaking which has now stopped but took almost a year. I have had issues attending the lung specialist clinic due to PTSD and issues with certain lung specialists to the point I would just cancel my appointments, so I didn't have to attend the hospital. I do a spirometry test at home and blood tests locally and then have a telehealth appointment using a hospital portal. I have a social worker who has been my best advocate when I have had issues.
After this amount of time, I was feeling weak and recently commenced testosterone via my GP and didn't even consult with them at the lung clinic. To address my mood, I commenced medicinal cannabis despite the lung specialists reluctance to support me doing so. It clashes with tacrolimus, so I take them five hours apart and have not had any problems. I feel your frustration it is a case of making them listen and explain their inaction regarding your side effects. I have reached the stage now where it is up to me to deal with existing issues or make the specialists accountable for their inaction by way of submitting reports to the hospital stating my issues in writing, this eliminates any denial of the fact the issue has been raised. I sincerely hope you figure out how to address your issues and wish I could be of more help to you. Good luck and keep slugging away!

Thank you for your kind response. I am sorry for the lack of attention to your needs. I will need to file a formal complaint but at this time I feel as though my care will get even worse. I feel so vulnerable no matter which way I go. I wish you good health for years to come.

If you respond in the right manner, it should not cause them to reduce the care you are getting. You have a right to expect your issues to be addressed. There should be a complaints department or avenue you can take to simply point out the shortfalls in your care and appeal to them for advice. There is always a manager in charge of every team.
Good luck I sincerely hope you find peace.

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

Hi, I am 6 months post liver transplant. Are you sure your abdominal bloating is not fluid? It took a few months for my new liver to realize that it didn't have to send fluid through the tiny pores that my damaged liver did causing me to have fluid drained. I was put on lasix and I lost 12 pounds of fluid in 5 days the had the fluid drained. This is pretty standard and your transplant team and coordinator should know this. A simple ultrasound can identify if it's fluid accumulation or not. Hope this helps.

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!

A correction to my post above - the author of the online book (Jim Gleason) did marry the donor mom of a 13 yr old boy, but not the donor of his transplanted heart.