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Post Liver Transplant and medical transplant support
I am 7 years post liver transplant. Since my transplant, I have been working with my transplant coordinator and my gastroenterologist regarding all of my bloodwork results, medication and support. During the first 4 years I had biannual office visits with the doctor and the nurse coordinator. Eventually my appointments were changed to once a year. I do have bloodwork done every 3 months and the results go to my gastroenterologist. If there’s anything abnormal with my bloodwork the nurse coordinator contacts me to resolve the problem such as adjusting my meds.
During my last appointment with the doctor, she mentioned to me that the decision has been made to move any 3 year post transplant patient from the transplant team to a primary care physician for ongoing care. I was surprised at this and I have concerns about my primary care physician assuming this role.
Has anyone else encountered this? If you have, how has it been? Your insight is greatly appreciated.
Thank you
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Hi Patricia. Are you a Mayo transplant patient? I suspect it may have something to do with insurance not willing to pay for probably more expensive care from the transplant team. Gerry
Could it be more of us are living longer and they are just swamped with patients?
Hi.
No I am not a Mayo Clinic transplant patient. I have private insurance through my employer and it is excellent. I have never encountered any disputes or pushback from my insurance and they have always paid for everything.
I wonder if it has more to do with me being stable and the transplant team having more and more patients with less resources to care for all?
Just curious if others are experiencing this and what impact it has created for the transplant recipient.
My concern is whether a Primary Care Physician is prepared to take on the responsibility of transplant care, especially the historical interpretation of the bloodwork results.
For example not changing my tacrolimus and mycophenolic dosage amounts because they may not be the textbook numbers, but my trending results.
Hi,
That was my initial is thought. However, are primary care physicians prepared for this? Is this going to create a new challenge for both the transplant recipient and the primary care physician as both start this proposed “journey “?
Does the PCP understand the intricacies of our individual blood work results and how they work hand in hand with our tacrolimus/mycophenolic dosages and other meds we take to keep our bodies functioning?
The idea of this proposed change leaves a lot of questions and concern regarding the potential impact it will have on my ongoing care
Hello @gphetteplace
I am 3 years post transplant (liver). I recently had my first post transplant visit in 1.5 years. My transplant team and surgeons were amazing. I’ve found post transplant care to be barely adequate. I have multiple health problems which manifested after my surgery, including peripheral neuropathy, numbness, hand tremors, a hernia, and pain on my right side. I’ve been told the issues are not a result of the transplant. My GP has referred me to a couple different neurologists and a rheumatologist. I’ve found no answers, other than my own research which indicates that PN and numbness does result from liver transplant surgery on occasions. It was suggested by my team that hand tremors can result from Tacrolimus.
I do my own research to find natural ways to help neuropathy and health issues associated with our meds. I do blood tests every three months and review them myself. I eat well and walk regularly for exercise.
When I switched from Tacrolimus to Cyclosporine(which has not reduced the hand tremors) my trough level was too low which resulted in elevated liver enzymes. I reported it, via portal, to my team for advice. The nurse said they’d get back to me, but I got no response. I took another blood test, again elevated enzymes. I raised my Cyclosporine dose by 25 mg, and after a couple weeks my enzymes were normal and trough level was within range. I notified my team as I needed another prescription. The nurse wanted to know who ordered the increase. I explained what I did and why, and got a new prescription but no comment.
I’ve found my GP helpful as she is fully aware of my transplant, medications, etc. I am fully aware of my medication needs and interactions. I never take any other medications or supplements unless I check for interactions and with my team if I have a question. I also were medical ID, with my transplant team info on it, plus medication list, etc. which is kept in the cloud for access in case of emergency.
I’d recommend speaking with your GP and express your concerns. Make sure they are fully aware of all of your health issues and risks due to our medications.