Help. Advice desperately needed.

Hello All, I've posted before about my transplant and subsequent problems.

Briefly my transplant was 14 months ago and I have had 13 months of infections, including pseudomonas, sepsis, pneumonia 3 times, urinary tract Infections . Also 3 nephrostograms, ureter transplant and 2 stents fitted and removed. All these problems have meant many months on IV antibiotics.

7 weeks ago my Gfr fell to 6 and the doctors felt that removing the transplant was the best option. I agreed and was taken off Myfortic (immunosuppressant). Since then after recovering from a chest infection my Gfr has reached 15/16 for the last 4 weeks. I have been infection free and feeling better than I have done all year! The nephrectomy (graft removal) is in 6 days and I feel so torn. Kidney staff and doctors say the choice is mine... and warn against the possibility of a future infection. I really don't know what to do and know no one can tell me the future, but please let me know of any experiences which may help me feel better about this decision.

Sorry for long post. I've abbreviated the story a lot!!

Regards Tashe

2 Replies

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  • I am so sorry for your problems with the transplant and constant infections. Unfortunately the decision does have to be yours with advice from doctors. It seems from your post that even they are not sure of the best possible outcome as they do not know if you will get another infection or not. The immunosuppressants do make you much more likely to pick up everything but supposedly this improves after a year but obviously not in you case. As the kidney seems to be working better at present could you wait and see or are your medical team very concerned about any future infections being worse, if possible.

    If you are feeling better I would go with your gut feeling as only you know how you feel and a nephrectomy is a big operation and then you would need to go on dialysis. Have they advised if you would be able to have another transplant?

    Do not rush into anything and ask about everything and the nd result. I am glad you are feeling better and maybe you will not get further serious infections for, at least, some time.

    Do let me know what you decide.

  • Thank you smashandgrab for your considerate reply. My gut feeling changes daily, sometimes veering from certainty that I must have the op. to extreme doubt that I need it. One thing I have requested is a meeting with a specialist the day before, so hoping they will express some certainty about the need.

    I am aware that I will have to restart the immunosuppressants ( because of my original disease- vasculitis) and this will make me open to new infections. On balance, today, it is probably sensible to go back on dialysis and hope that I will get back on the transplant list next year.

    I'll let you know the outcome when it's decided!

    Many regards, Tashe x

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