Not suitable for dialysis

Hi all

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

7 Replies

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  • Hi Charlene

    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!

  • Hi

    Thanks for replying Nicola.

    I am waiting for an appointment to have my work up done. I am also O but rare tissue type from when I was tested for live donor.

    Wow 16 years of waiting must have been hard. I guess waiting for that call to begin with is strange but you would soon get use to it

    Cx

  • 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.

  • Hi Charlene,

    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.

  • Thanks Philip for all the info. I have already had ecg and heart scan so just need the other stuff done.

    Cx

  • 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

  • Thank you for the advise and sharing your experience it certainly helps hearing from others

    Charlene x

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