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I joined this forum a few weeks ago,and things have moved quickly
My Egfr is now around 6 but falling weekly
My sister has today been told we are a 6/6 match to each other
I am having tube fitted next Thursday for Pd dialysis
What other tests will my sister have to have and how long does it take?
I have had Echo heart scan and chest X-ray
Can someone who has gone through this answer in there experience the time scales involved ?
Do you think I will need dialysis or are the test quite quick
Thanks
Ste
Hi Ste
I haven't been through the living donor process but I would imagine it would take a matter of months not weeks and with a gfr of 6 and falling I think it's likely you will need dialysis. I know a few people on here have been through the living donor process so maybe they can give you a more accurate time scale
cathy
40 yr old with Alports syndrome
CAPD since Sept 13
Nov 2012 - listed for transplant
27 Mar 2014 - I got the call!!
There is a thread already about waiting times which may be worth having a look at :- http://www.kidneypatientguide.org.uk/fo ... 2&t=11392m, it does take a while as there are a lot of checks and tests to be performed
I had to wait about 16 months for mine - there were complicating factors due to location of donor so we couldn't get tests done quickly, but my eGFR whilst decreasing was doing so at a slowish rate and I started at a higher point than you, so l avoided dialysis before the transplant took place.
As you say your eGFR is dropping weekly, looks likely you will need dialysis as the donor process is fairly lengthy. Your transplant coordinator should be able to advise you of the timescales for your unit from start to finish, and wish you best of luck with it
I agree with Joe above - it will take months to do the donor tests (see my blog below). There are so many things to be checked and they will want to be sure that they won't be at risk of actually harming your sister. With an eGFR of 6, I'm surprised you are not on dialysis already - I donated to my brother last October and his eGFR never got into single figures.
Feel free to PM me any questions about the donor process
It took us around 10 months from first approach of the donor to the Living Donor coordinator to the operation taking place. I think less than 6 months would be a real surprise, to be honest. I'd be happy to be wrong, though! Chest xrays, ECGs and such like, it depends on the specific person and what they may find in the early health checks.
The very best of luck to you.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Not much to add to above. It can be a bit like buying a house, in that if you establish a good relationship with the TX coordinator and gently keep nudging, then it can speed things up a little.
But no matter how quickly it can be done, they would prob say you need some dialysis first anyway if your GFR is 6. That's about what mine was when first diagnosed and that's what I was told.
Good luck. There's loads of good info on the other threads people have posted above. But feel free to ask anything you like.
I think the general consenus is between 10 months to a year, if there aren't extenuating circumstances.
Cultivating a good relationship with the transplant co-ordinator is useful, and it certainly helps having a proactive donor as you can't do the pushing for them, it has to be done by the donor.
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
About a year for me. I didn't have a good experience with my transplant coordinator. Tibbs is correct, a good relationship/well good coordinator will help make sure the tests are done and stuff arranged in a timely manner.
For me it was all about making sure the donor was not feeling forced into anything and the time taken to get to donation made sure for me that he was really serious(well he lost 4 stone to do it)
Be prepared also for setbacks. We initially should have had the operations on 20th December 2012. This then went to 31st January 2013 then was done on 18th Feb 2013. These were for a number of reasons, the most important part of all this was my donor was safe and nothing was forced/rushed through.
Good luck to you both, it is one of the most amazing and draining things everyone involved will go through....I bet it is even more so for the family members not having the operations. Not only will it give you a new lease of life but a totally different view on everything.
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.
