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Post Liver Transplant and medical transplant support
Transplants | Last Active: Sep 10, 2023 | Replies (5)Comment receiving replies
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
Replies to "Hi, That was my initial is thought. However, are primary care physicians prepared for this? Is..."
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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.