Major Testing At Last

Well, I've just been at my local transplant centre for a large programme of testing.  I had expected this would take all day and am somewhat surprised to have only spent 2.5 hours in the hospital this morning! So here I am back at home eating my packed lunch, having only read five pages of "Pilgrim's Progress" this morning.  [I was advised ALWAYS to take plenty of reading material for such a wide-ranging set of appointments.]

The following tests were done: an ultrasound of my abdomen, a chest X-Ray (i.e. heart and lungs), a collection of blood samples, a urine sample and an electro-cardiogram (ECG).  There was also my first interview with a nephrologist ("neph"), who also did various checks again such as height, weight, blood pressure and a fair bit of trying to tickle me with his stethoscope.

The day started well at radiology, apart from the liquid.  One is instructed to consume TWO pints of anything non-fizzy (I guessed that ruled out my favourite ale even though it isn't really fizzy), just one hour before the appointment.  I was early and the wait was getting risky, and then to my surprise I was called for my chest X-ray.  How good that someone is switched on enough to know that she can take me and do a one minute test, thus getting me out of the way before her day gets busier.  At 8.10am the waiting room had only the person before me who went in at 8.20; I was seen promptly at 8.40am for the ultrasound by two young and attractive radiologists (one was a trainee) - I realized afterwards that I was probably older than their combined ages!!  Part of the test requires a full bladder and then you can (at last) relieve yourself and they do the test again.  It's noticeable that part of the design of a hospital requires the Ultrasound room to be situated immediately adjacent to some toilets.  Then I had to go back to the loo and do it again...  When they finished one said that I have an enlarged prostate and added "nothing to worry about - that's normal as you get older!".  When I came out after 30 minutes, the waiting room had about ten people in it; I felt slightly guilty at keeping them waiting because I had spent 10 minutes in the loo!

Then it was over to the Transplant Centre.  They seemed to have a new system and new staff at reception, but I found that it helps if you can tell them what you need, as the odds are that will speed things up. As I have remarked before, you seem to get treated very well as a potential living donor (PLD).  I actually felt quite guilty (again) at taking a seat in a crowded waiting room and then being called only one minute later by the Transplant Nurse for a general check on what we were doing today.

Then after a whole five minutes waiting, I had a lovely chat with the neph.  One thing that he is checking is whether I am fully informed about this decision (and of sound mind) so it seemed right to show that I had done some research about the risks and so on.  At least nowadays doctors accept that patients may very well have done some on-line research for themselves; information is power and once they used to resent any such input from the patient.  He also went through my medical history and I was reassured that there was nothing in it which would appear to impact this process.  I did volunteer the view that I think my medical problems in the future will be related to joints and ligaments etc which are more structural than anything related to systems, and therefore unrelated to donating a kidney.

Then after a brief stay in the waiting area, I was called for about five blood samples to be taken. The most important of these will be the one which allows assessment of my kidney function, either as eGFR or a creatinine measure.  After a quick urine sample (still easy after the two pints) and an even briefer stay in the waiting area it was time for an ECG - this confused reception as they were going to send me back to Radiology for it, but the Transplant Nurse was going to do it herself.  I know from many annual pilot medicals that I have a "right bundle branch block", but the ECG machine didn't do any auto analysis and neither nurse could interpret it to confirm that.  I once annoyed a radiologist in Guys by predicting the result; despite being young, she was of the old school where patients weren't allowed to access that sort of information about themselves!

Then that was it.  I was allowed to go and was on the bus back to the Park and Ride within three hours of ariving at the hospital.   Everything looks fine at the moment, so I have to await a review of the test results by the senior "neph", and then I will get an appointment for a CT scan.

Assuming that the scan is OK, my transplant centre will then pass me on to the team at my brother's hospital in London where the surgery will actually take place (if it all goes to plan). Of course, if there's a problem then it's the end of the line as far as my involvement is concerned.  At least there is already another perfect match donor available for Tim.  At his recent routine appointment they expressed surprise that there were TWO perfect tissue type matches from siblings as they would normally only hope for such a good match from an identical twin (and not neccessarily even then).   Mind you, a perfect match is far less significant than it used to be; I think it just reduces the cocktail of drugs that the recipient has to take and possibly also improves the probability of everything being fine; this seems a good thing, even if it's only a 1% improvement in the already high probability of a living donor's kidney still working well years later.

Waiting, Waiting...

I've never been good at waiting patiently, and my tests on July 3rd still seem some way off.  I think having made a decision, I like to see it implemented without delay, even though there is no urgency (yet).

Slight progress as been made as I had a blood sample taken at my GP's for a check of my blood sugar level.  This was a "fasting" test, so I was not allowed to have anything to eat or drink from 10pm until the test at 8.30am, except water.  My wife looked as sad as Mrs Doyle (on "Father Ted") when I refused the usual cup of tea at 7.15!  The results are OK, apparently; I've not actually seen them but I've been told that they are on the computer system where (I've been assured) they can be seen by the hospital (as one would hope, given the amount spent on the NHS IT system!) so there's no need for me to take a letter with me.  NB The GP was at pains to point out that he cannot necessarily see details of things about me that the hospital do, but the hospital can see all that he does to me.  Seems fair enough.

I've also had an appointment at Radiology confirmed for July 3rd as well.  It's going to be a busy day then, as not only will Radiology do an ultrasound (to check that I have two kidneys) but they'll also do a chest X-ray while I'm there (to check I've got two working lungs, I presume).

In the meantime, Tim has just had a routine appointment; his eGFR is stable at 19%, which is good news.  Although a transplant is (as I understand it) inevitable, a delay in the inexorable fall of eGFR is a good thing at this time as they like to start dialysis at 10% and will plan the transplant at 15%.  We wouldn't want it to suddenly fall, as that would precipitate an urgent need for dialysis or a transplant, when the donor is not yet fully tested and approved.  I am well aware that my tests could easily yield some unexpected issue or question, so I'm not taking any of this for granted (especially at my age!).

Countdown to Testing

The process moves forward, slowly.  Almost three weeks after being told the result of my tissue typing, I now have a date for an appointment for further tests. This will be on July 3rd, when my local transplant centre will try to do, in one day, all the tests that they can do to see if I am suitable to be a donor.  If I pass all those, then all further testing will have to be done at Tim's hospital in London as that is where the operation will be carried out.

I wasn't not totally sure of what tests they will do that day but, as I was writing, I just received the appointment letter (NB dated over a week ago!).  They will take lots of blood samples, and will do a chest X-ray, an ECG and an ultrasound.  The ultrasound will show if I have two kidneys (as some people don't, and never know it).  Having held a private pilot's licence, I know the result that I should get from an ECG as I had one every year with my aviation medical.  This is always quite funny when you tell the doctor/nurse/specialist what to expect as they seem to assume that you have never had one before.

I also have to do a fasting blood sample to monitor my blood sugar level, and they want me to do this with my local GP to save the travelling to the hospital.

If I fail any of these tests, then it's up to the next in line to be tested.  That would be a setback for both me and Tim: in his case, it could delay an operation; in my case, it could mean that there is something major wrong with me.  I suppose that getting an early diagnosis of a major issue would be a benefit in terms of treatment, but that would still be a bit of a blow.  Of course, it could just be something ever so trivial which could be affected by the transplant operation but would have no obvious effect on my health. 

Somewhere in all this there are meant to be interviews to make sure that you are fully aware of the implications of what you are doing, are not under any duress and are not receiving any payment.  However, I'm not sure if that will happen on July 3rd or later.  By that date Tim should have had his next check of eGFR so we might have an idea of how he is doing.

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?