General
What are the three things that bother you the most since your transplant?
June 14, 2023
in General
1) diarrhea many times daily and nightly (clearly related to cellcept)
2) skin cancers that I have had to have removed annually since five years back (around ten years on transplant drugs until they hit me)
3) the risks for infections, more serious cancers and the scarring of my transplanted organs (due to prograf)
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Transplant Patient
I'm at a point where I'm not sure which of my issues predated my transplant and which ones are transplant related. But my top issues would be scar tissue/scarring of organs (due to my transplant surgery and subsequent surgeries) which has caused a lot of issues for me in other areas and brain fog/mentally not feeling all there/anxiety made worse by my immunosuppression meds.
Coming from the background I have in rare disease, transplant has been significantly easier to manage and I've become aware of how much privilege I have in the transplant space. So when I think of what issues I have, a lot of it boils down to accessibility of care and socio economics and the need for more mental health focus. I've had a lot of struggles but I've also gotten very lucky, and I don't think survival should boil down to luck.
Transplant Patient
Great points @AliEm14 and of course we are all lucky and privileged but we deserve better….
Not enough research and money are going into transplant medicine.
That has to change in the future, so we can get better drugs that don’t cause such serious side effects!
1) Systemic and bureaucratic deficiencies that cause many less people able to benefit from transplant than possible - many die in the process when there are so many ways to live with the resources we have!
2) The extreme sun sensitivity
3) The prednisone side effects - anxiety, acne, weight
Yes, the sun sensitivity and the acne from prednisone!
The façade that I am "all better".
The increased risks of everything else now.