Just received a telephone call from my consultant and been told I have been put on the deceased donor list and need to have all the relevant work up but not starting dialysis. My renal function is now 8% and unfortunately my parents could do the paired exchange program due to them having kidney complications
Has this happened to anyone else?
Thanks
Charlene
Written by
Charlene_Coxhead
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I had no suitable live donors either. I went on the deceased donor list 3 years before starting dialysis. I was 17. The idea was that I might get a kidney before I went on the machine. They couldn't have been more wrong -I waited 16 years, being o positive yet having a rare tissue type. Transplant work-up has changed since then I think-I had to have my wisdom teeth removed-not sure they do that anymore!
Yes- you expect a call to begin with. We had to carry a pager back then as mobile phones weren't around. I got bored after 2 years and didn't bother. I got a call after 10 years but I had antibodies so that oe didn't happen.
My transplant "workup" consisted of several hours in the hospital for different tests, treadmill, ecg, blood tests, tissue typing, this lasts for 5 years. I go to see my transplant surgeon once a year and then hope it will happen, been waiting 3 years, had one attempt but was a no go after 10 hours in hospital. Just keep the faith.
Hi Charlene, I had the similar experience and subsequently went for necessary suitability tests and was all prepared in the ward for Xplant and at the last moment, the consultant said that he cannot risk to proceed with the Xplant as the "donor" kidney which had arrived was infected.
Few of fellow renal patients have had similar experience and the donor organs were found to be suitable si please be positive and have faith in your consultant. All the best. Madhu
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