Volunteering and Testing

One thing I have realised already in this process is that, to a certain extent, the potential Living Donor (LD) has to take charge of the testing process.  Unlike any other operation, you are not ill and you do not need the surgery - you are a volunteer and can back out at any time.  Part of the testing process ensures that you are indeed of sound mind and are doing it without coercion.  The transplant centre staff clearly are at pains to NEVER put any pressure on potential donors, as it is illegal and they would not want to be accused of this at a later stage.  Logically, therefore, they are not going to order your tests as though you were a patient, with the occasional reference back to you to make sure that you are still up for it.  Rather, they almost want the potential donor to reaffirm at every stage his/her decision to donate; it's as though volunteering once is not enough, you are repeatedly volunteering.  So, I guess if it all goes quiet in the process, it's time to take the initiative - phone the transplant co-ordinator and talk about the next steps. 

This could be one reason why a common theme among LDs is that the whole thing seemed to take ages.  In my case I don't actually think that we should be slow to get the show on the road as the intended recipient is not getting any better!

I think another reason for a slow process is that the medical profession likes to do things in sequence, not concurrently.  To me, it is quite reasonable that you should wait for one test result before actually doing the next expensive test, but if there's then a long wait for that expensive one, it would seem reasonable to book it before getting the results of the previous test - you could always cancel it if you fail the previous test.  I've had that sort of thing at the dentist, trying to book a follow-up appointment (typically three or four weeks) before the routine examination when you know for a fact that there will be follow-up work.  Talking of dentists, I've just had a routine check up and, as I suspected, a bridge has failed and is only held in by the adjacent teeth. At least that issue won't get in the way of donating a kidney!

Tissue Typing Result

Well, I've been on holiday for a week and on the first day away I was called and given my tissue typing result.  It seems that I'm a perfect match for Tim and, as it happens, I already knew that Nick was also a perfect match.  We had had a discusion about which of us potential donors should be tested first.  Nick had realised that logically it would be better if I took precedence as he and Tim run a company together, whereas I'm retired; I wasn't going to argue as I had always felt in my bones that this had my name on it (as I've mentioned before).

So, a week ago I called Nick to confirm that decision and then rang the transplant co-ordinator at Tim's hospital.  Having told her of our decision I rather expected that things would start to happen fairly quickly.  Back from holiday yesterday I rang the transplant co-ordinator at my local hospital; she knew the tissue typing result but had not been told of our decision!  I'm very glad that I rang her as it would have been annoying if nothing had happened for a few weeks before someone realised that communications had failed - you can see why things can take longer than you expect.  I think that one has to take charge of this sort of thing and not be a passive patient.  Anyway, now she will sort out the next step and very soon I'll be back there for a whole set of tests in a single day. 

I think their process is that having found a donor who passes all the tests, they wait until the recipient's GFR drops to 15% then schedule the operation so it's done before it gets to 10%.  His last figure was 19% and they cannot predict whether it will stay around there for ages or suddenly fall.  Of course, we don't know if I will pass all the tests so I think we should get on with this soonest, thus leaving plenty of time for other volunteers to be tested as required.

NB I'm still not sure why the cross-matching hasn't been done yet.  I think they said they'll do it later but it seems to me quite important that my blood doesn't get attacked by his!

On Line Research

I guess most potential kidney donors do the same as me - search the internet for answers to questions and, especially, for stories from people who have done it.  There is one major caution here - you must make sure that what you find is clearly dated, as medical procedures have clearly been moving very quickly.  It is easy to read a story about breaking or removal of ribs to facilitate kidney removal and think "that doesn't sound very nice"; then you discover that it was written in 1999 or 2001 which really is ancient history as far as kidney donation goes.  A major advance is that laparascopic (key hole) surgery now seems to be almost universal unless there are specific medical reasons for the older method, which is rare these days.  As a consequence of this and other changes, donors are now discharged from hospital far more quickly than in the past, which can only be a good thing in principle (so long as you actually are fit enough!).

The precise testing and the order seem to be very different wherever you go - there are lots of similarities but the differences could lead you to have some real confusion!  There are differences between the British and American approaches, and there are differences between hospitals so even if you find a recent experience on line, don't assume that what you read is what you will go through.  Absorb the information and balance it with other people's experiences, then store it as a question to ask when you finally meet a specialist.  I've already stored for later one big question about pain management; I hope this has improved as well because I have found some poor reports from 10-15 years ago.

I have to mention one particular blog which I found last night.  It's called "the kidney thing" and it is clever, informative and funny - see if you like it.

Now I'm properly in this process

At last, I have had the first interview plus had a load of blood samples taken.  It seemed to me that things were going a bit slowly so it was good to spend a couple of hours at my local hospital's transplant centre and get things started properly.  It's also quite a funny feeling going for a hospital appointment when you are not actually unwell at all; then you get treated very well, as though you are valuable and an important person - is this now a mark of the NHS for all patients or are donors given special treatment?  It was when I saw a stamp on my documents saying "Potential Live Donor" that I realised that perhaps a live donor is indeed valuable not just to the recipient but to the NHS, due to the fact that the donation will save the NHS thousands in the coming years. 

I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process.  The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now.  He spent most of  last year stable in the mid 20s.  I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10.  If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).

So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching.  This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time.  If just one of us is suitable then there's no real decision as we are both already willing and committed.  If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer.  I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative). 

One question which was asked yesterday was how I felt about the idea.  This is very hard to put into words, but I have no worries and no concerns.  Why would I not offer?  Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc.  By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards.   I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling.  To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering.  I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason.  Why would I not want my brother to be healthy?