When does testing for a living donor start?

[ScrapheapHuman]

I know my kidneys are failing, I know I will need a transplant, I know there is a chance I will need dialysis. The questions is just when... could be next year, could be in 10 years. I have 4 possible living donors, one being my husband. He doesn't even know his blood group and the GP will not do a blood test, for him to find this out.

At what point does testing start via the renal team to see who s suitable?

[rheaybou]

I would ask to speak to the transplant coordinator/find the persons details on the web and give them a call/discuss your situation and they may contact your neph.
My donor tests started as my renal failure was identified, and they can take 6-12 months, so starting well in advanced would reduce the chances of needing dialysis.

great to hear you have the offers of testing/donation and i am sure they will be willing to at least check blood type at this stage for all four.

[Tibbs]

My potential donors began their testing when my renal numbers necessecitated my going on the deceased donor list.

The transplant people told me that they try to time it (assuming that they get enough notice) so that by the time you have a transplant you are just at the point where having dialysis would be a good idea.

Given the standard time it takes to do the work up, that should be about 10-12 months before you need to start dialysis.

None of the tests were done at the GP; they were all done by the transplant co-ordinator at my hospital.

[chicklet7513]

My live donors were tested once I was considered to be 6 months from dialysis. The whole process was organised at the hospital by the live donor co-ordinator and took about a year.

I was lucky enough to receive my transplant just over a week ago from my wonderful mum

[ScrapheapHuman]

Can I ask why they wait so long. Could they not check potential donors just to if they are a match first of all, then do all the rest of the testing near the time?

I have two possible donors and I know my Dad is a different blood group, but they have said that won't matter it is the tissue type. There is also my husband but he has no clue what his blood group is, the GP wont test him even just to find his blood group out and obviously the hospital wont either. But the hospital keeps telling me to get his GP do it.

[saday]

Hi

My sister is booked in this week for some blood tests to find out if she is a suitable match to donate to me. My function is around 16gfr. My kidney Dr told me they will only test when its necessary as most of the tests are expensive and if done too early will need to be repeated close to transplant time. Anything could happen between now and potentially, ten years time to rule out either your husband or your father, so knowing whether or not they are a blood group match is really no advantage. This is why they leave it until as late as possible. As I understand it finding out blood groups is the first step of many. If you were to know whether either of them were a match it could have a bit of a negative impact in the future when it is time for testing. For example you could spend the next 5 years thinking you are sorted for a donor kidney only for either of them to be refused on other grounds. I think this would be devastating and while I can understand why you want to know, I think it's also important to be able to not let the worry take over your life.

X

[MatthewC]

The transplant people told me that they try to time it (assuming that they get enough notice) so that by the time you have a transplant you are just at the point where having dialysis would be a good idea.

Given the standard time it takes to do the work up, that should be about 10-12 months before you need to start dialysis.

That was the case for me and my brother. When his eGFR hit the teens (after many months in the mid-twenties) they advised him to actively find a donor if he could. After some initial tests it was all put on hold for some months as he wasn't ill enough! Then we went ahead and he would have been put on dialysis by the time of the op if it had not all been already planned - they almost waited too long and he was actually more ill than they thought. Because of the hold, the elapsed time was 20 months from me volunteering to the op, but it could have been 9 or 10 months if they had got the timing right.

It's now 6 months ago and he is doing really well - getting back to his old energetic self.

[MandyV]

Hi Scrapheaphuman

Testing multiple and fruitless live donors is expensive and therefore they are looking to keep control of such costs - some people would come forward with countless donors and want to pick 'the best' which is all very well if there were no limits on resources.

If your husband doesn't know his blood group why doesn't he go and donate blood? They should tell him and, since it is quite likely that you will need a blood transfusion at some stage if you have a tx, it has the bonus of paying forward!! You never know, he could become a regular (and very valuable) blood donor ....

[MatthewC]

Testing multiple and fruitless live donors is expensive and therefore they are looking to keep control of such costs - some people would come forward with countless donors and want to pick 'the best' which is all very well if there were no limits on resources.

For my brother I think they did tissue typing on three of us (all brothers!) and then it was just one at a time, i.e. me until/if I had failed anything.

[ScrapheapHuman]

Thank you for the replies, that clears things up a lot!