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No luck this time......

PostPosted: Thu Nov 10, 2016 12:24 pm
by Dixie1
Hi all

Just thought I'd share this, in case it is of any use to anyone in anyway!

Those of you that have been on here for a while will probably remember that the process of a living donation from my husband all went horribly wrong last year, when he was diagnosed with kidney cancer. He had a partial nephrectomy and, a year later, so far so good.....

Anyway, in May of this year I was put on the deceased donor list and last Tuesday I got 'the call'. I went into Guys with managed expectations, as I know people often have to go through the process 2 or 3 times before it actually happens, due surgeons not being happy that they kidney is quite right etc etc, so I thought 'this is not going ahead until they actually wheel me into theatre'. After 10 hours wait (the kidney was coming from Ireland apparently) the disappointment came. Not because the kidney wasn't right but because I wasn't right apparently! Apparently my white blood count and platelets were too low to proceed and so the whole thing was called off. I feel a little frustrated because, apparently, my results have been at these levels on and off for a year and certainly pretty consistently since July. I understand that the surgeon was right to decide not to go ahead but just frustrated that this has not been picked up before. So, now I have to wait to be reviewed (spleen, bone marrow etc) by a haematologist before I get signed off to go back on the list.

Meanwhile, I take comfort from the fact that I had only been on the list 5 months before getting the call, so I have to hope this means I am an easy match.....

Re: No luck this time......

PostPosted: Thu Nov 10, 2016 1:02 pm
by Dibs
Better luck next time, Dixie.

I said that I would take anything that comes along and I was told that I was common in terms of blood and tissue. No call yet after 20 months though. The average is still over three years isn't it?

Re: No luck this time......

PostPosted: Thu Nov 10, 2016 2:10 pm
by Dixie1
Thanks Dibs

Yes, I think the average is still 2 to 3 years in the UK. I am quite lucky in that I have the rarest blood group (AB) but it means I can have a kidney from any blood group at all.

Hang in there! :)

Re: No luck this time......

PostPosted: Wed Nov 30, 2016 10:35 pm
by lashy
Positive vibes and best wishes being sent that the next one is 'the one'! X

Re: No luck this time......

PostPosted: Thu Dec 01, 2016 12:15 pm
by Trisha
My husband had to have tests for a year before he went on the transplant list. Then he had to wait two and a half years to actually have a transplant and he's now recovering from the op. Unfortunately he wasn't steady on his feet when he left hospital and was prone to falling. On Monday he fell and broke his shoulder. We're hoping that the fracture won't affect the transplant and vice versa. The nurses in his dialysis centre said 2 to 3 years was about the average waiting time but it does happen.

Re: No luck this time......

PostPosted: Thu Dec 01, 2016 4:57 pm
by wagolynn
Hi Trisha,

Sorry to read about hubby, I hope he soon recovers.

There is a condition see here ... ction.aspx

This may be worth mentioning to the doctors, also if the blood pressure is low, standing up quickly can cause dizziness especially in taller people.

Best wishes.