I had chronic renal failure for about 20 years until I received a transplant about 3 years ago.
My mother had kidney failure as well but no-one else in the family.. grandparents, great-grandparents, aunts, uncles, cousins etc on either my father or my mother's side.
My mother had hyperuricaemia and ultimately nephrotic syndrome.
At the time of my transplant I was told my condition was called FJHN which is a rare hereditary condition, characterised by hyperuricaemia and hypouricosuria.
£ years later I now have enough of myself back to try and understand what has been going on. I have obtained my blood and urine tests from befor emy transplant and they show very clearly that I did not have hypouricosuria which is a key determinant in establishing FJHN. The accepted conclusion is now that I did have interstitial nephritis but I could not have had FJHN (confirmed by genetic testing).
I did however have hyperuricaemia which was manage by allopurinol.
My problem is that my team who are now managing me say that they can't revisit my original diagnosis (presumably for political reasons .. their former boss who is a very senior renal professor, but now no longer practicing renal medicine (!!!) - made my incorrect diagnosis).
Obviously if the diagnosis is not known then the medication I am being given post-transplant may not be correct.
The reason I am worried about this is that I have now started to develop interstitial nephritis again in my transplanted kidney. I am told this can happen in any transplanted kidney and while I know this is true I would be more confident (and less worried/ stressed - which means probably healthier) if I was clear what my diagnosis actually should have been and that none of the medications (prednisilone, cellcept and tacrolimus) actually happen to be a really bad idea in my particular case.
I am not sure that even moving to another UK renal centre will work in terms of gettng me a correct diagnosis given the reality of the politics and career protection that takes place in the medical profession (no renal specialist is likely to want to openly contradict / undermine a former head of the national kidney federation!)
I am not sure what to do and nor is my GP - the suggestion is to try and go with the status quo and 'hope' that the meds I'm taking aren't a problem for my specific (unknown) condition.
Any advice would be very welcome.
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