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hello everyone,
I have question, hopefully someone can help with their experience, I am currently on dialysis, have match for live donor (my wife) we were told it would take approximately 6mths from first bloods to transplant, we are currently at 13 mths and are yet to be given a date, they have said early next year, so if that means january, surely they would have an actual date ?? find it difficult to believe that elective surgery is not scheduled at least a month in advance.
Our transplant co-ordinator condescendingly told us she realised it must be frustrating !!!!!!!!
Not quite the turn of phrase I would have used, so what has been your collective experiences ????
It was also cancelled just before xmas last year and then at the end of January. However it was scheduled again for 18th of Feb this year. I know how you feel and the coordinators attitude will not be helping matters I am sure (I also had problems with mine being, well, not coordinated)
Please try to remain calm, it will help you and your donor stay relaxed and stress free as possible. You will be surprised how quickly pre op and a date can be set, I wish you all the best of luck.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
You don't say how far through the testing your wife is - is she finished (up to the point to which they go until a date is fixed)? I reckon the elapsed testing time was about seven months in my case, but there were gaps in the middle as they didn't think that my brother was ill enough to be scheduled for an op. After 7 months they scheduled us, then they changed their mind again... In the end there was 18 months between me volunteering and the op.)
However, you must be "ill enough" if you are on dialysis (my brother wasn't). Have you even seen the surgeon yet? I can only suggest that you press your consultant on this and get him/her to say what the delay is for.
Took just under a year for me and my husband but they didn't seem to rush even though I felt pretty ill and my CR was 560, depends on which hospital too.
My hospital were aiming for 8 months from start to finish but it wound up being 11 because of some complications with my donor.
The date for me was set about 4 weeks before I think.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
My donor first contacted the transplant coordinator on 6 January. The transplant happened on 16 November. This involved him coming over from the US for the transplant. He also came over for a week in June, which was when ALL the tests that he needed to have in the UK happened (cross match, HTA interview, surgical assessment, isotope GFR, CT scan). This took a fair bit of planning, in particular on the part of the coordinator, as these would normally happen over several months. He did have some things done - basic health checks, ecg, estimated kidney function, ultrasound - done in the US before coming over. We got a green light to go ahead in early July, an the November date was mostly to suit my donor's schedule. It could have been anytime from August I think.
