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Testing for Transplant

PostPosted: Thu Mar 09, 2017 12:47 am
by Johnylefox
My cousin offered to donate last May and started testing June.

We are still ongoing.

He missed one appointment in September and it took three months before they could see him again, that's life I suppose.

Then he was given a 24 hours BP monitor to wear on 2 February.

Still no results from this test.

I speak to the TX co-ordinator and she just tells me she cannot give any information.

I cannot think of any serious condition where you have a course of treatment and they cannot tell you when it will happen, what the key states are, how far you are down the line.

I have a donor, he is there, waiting. He now wants two months off to sort out his daughters wedding which I fully understand. He nearly kicked my door down to give the kidney. But the TX tests just take forever.

I recently switched from PD to hospital heamo and my health is good. But my mental health is like a plate of confused jelly.

In times gone by I would wait till Friday and go the pub for 4 or 5 pints and would float home having got it off my chest.

It just seems like I am adrift and nobody takes ownership.

I know people have worse situations, but I need to look after me.

Re: Testing for Transplant

PostPosted: Thu Mar 09, 2017 9:40 am
by rheaybou

From experience the workup / testing for transplant is the most stressful experience myself and my donor went through - this is my story ... h39s-story

It took almost a year to complete the tests and psychological evaluation and I had the same frustrations that you have been going through. The TX coordinator can't give you details on the progress / stage your donor is at because of patient confidentiality.

Is there anyone who isn't connected to you that you could talk to? Helps to have an ear that isn't family who will let you vent - failing that go to the pub the night before dialysis and have 3-4 gins.