More Positive Progress

I've now got the Human Tissue Authority interview booked for next Tuesday.  I've not yet had the list of things to take but it includes a "long" birth certificate (which I can't find) and lots of photographs to prove that Tim and I have been part of the same large and loving family for years.

The "long" birth certificate is the one with your parents names on it, and I can only find the "short" one; this has been resolved by ordering a new one, which I shall pick up at the register office on my way to the interview.  This involved a couple of funny phone calls as the local authority registration office is only about 250 yards from the house where I was born (and where my parents still live); hence when they said "where were you born?", my reply produced a friendly response along the lines of "I walk past there on my way to work"!  At least it made the 7 day response become a bit quicker.  Then on their form they ask for the reason why you want a birth certificate, and I suspect that my reason was unique for them, judging by their reaction.

I've also had some more test results, and a copy of the surgeon's letter to my consultant which sets out her reasons for judging me suitable to be a donor - I think I'll frame it!

The test results include a PSA check - dunno what that means but it was a blood test about my slightly enlarged prostate.  This was the one from my ultrasound last year that was "probably normal for someone of your age"!!  Anyway, the transplant nurse has told me that it is fine, and the surgeon's letter gave me the result of my exercise ECG last week, which was also fine, apparently.  The important bit of that result is that there are "no ST changes" on the ECG; if you search for "ST depression" then you'll find what that means, and I think it's pretty important so that's VERY good.

So, essentially, apart from the result of my fasting lipid profile (i.e. blood test for cholesterol), I'm good to go.  This is good, as my brother has seen his own consultant this morning and she is very pleased with the operation date; had one not been set he might have been looking at starting preparation for dialysis.  I don't think he had actually realized how ill he is, and the setting of a date has been a bit of a shock to him.  So, the waiting really is over, and it's time to sort out the details of how to prepare for the operation itself.

That Leads us to Who Knows Where, Who Knows When?

I think I have always known WHERE this road leads, but it's still a question of WHEN? We're now just waiting, it seems.  Tim's eGFR remains in the high teens as it has done all year, and until it falls below 15% they don't intend to schedule any surgery.  This might seem like a good thing but it does nothing for Tim's symptoms or his overall health, and I'm just impatient.  Possibly at some stage I will visit his hospital just so they can meet me.  They've had all the test results from my hospital since August, and since no news is good news in that respect, I know I'm all OK.  When I visit I expect that I should have some interviews as these have been noticeably missing so far. All I've had was an initial chat with the transplant co-ordinator, and 30 minutes with a nephrologist.

On-line research shows many different approaches to donors and living kidney donation, which produces a huge variety of patient experiences.  Places seem to have their own specific emphasis on certain aspects; some places in North America seem to favour multiple urine tests, sometimes of huge quantities!  I seem to have got through the process so far at an amazing speed with a real lack of hassle, delay or aggravation.  It really surprises me that, if Tim's eGFR had fallen in August (say) then the operation could have been done before Christmas - and I only got going on this in April!  Other people wait for ages, with tests, repeat tests, worries, doubt, issues to be resolved and lots of aggravation; I think such delays can only add to the problems and doubt which a donor faces - surely they should try to make it easier and (especially) quicker? You can see why I feel pretty grateful for a pretty easy ride so far.

I'm still doing on-line research about people's actual experiences during their stay in hospital, looking especially for good tips on what to do/take/expect.  There are some good ones out there but you are never sure how current they are, or whether they apply also in the UK... etc.  I promise that I will add my own tips and experiences to the on-line library in due course.

There are also lots of other things that I will need to learn more about, such as pain management afterwards - I've never heard of most of the drugs that people talk about, far less understand why one is preferable to another. Some of the stories are almost scary and people can take ages to recover; conversely, some people recover without trouble and one went back to work after just TWO weeks!

Still, patience is a virtue, they say, and I'm certainly learning how to be patient.  As I've said before, once I've made a decision my preference is to get on with it, not pussy-foot around waiting.  I certainly have never had any idea of changing my mind, and any delay would not cause me to but it does just add to the overall stress.

Altruistic Directed Kidney Donation?

ITV's "Tonight" programme last night was about an American website which matches altruistic kidney donors with suitable recipients.  They claim to have matched over 250 altruistic donors with recipients (presumably mostly in the USA) although I didn't hear how long that took.  Apparently they are now launching a website for the UK as well.

Now, it turns out that this is not illegal in the UK, but it is contrary to the "accepted" way of doing things here.  In the UK, an "altruistic donor" is also called a "non-directed donor", because such a donor agrees to give a kidney to anyone (who is selected by the NHS, I presume).  Since this was made legal in the UK in 2006, there has been only just over 100 altruistic donations made (the figure they quoted was 117).  In this context, the US figure is quite significant.

The big question is whether this is the way to go?  The samples of videos from the USA frankly made me cringe.  I can see that there's an issue that the person who is loudest, with the best video and best self-promotion, is the one who gets a donor; this does not seem "fair".  It almost seems like a beauty pageant where the most attractive person wins, and I really do not think that we want to go down that route, do we? I can understand why the NHS wants to preserve anonymity as it avoids lots of issues and makes the process simpler but, if selecting your recipient actually has a significant effect on the total number of altruistic donors, then surely that's a good thing?

As you can see, I have no decided view on this matter; there are pros and cons for both sides.  However, I have a suggestion which is a compromise: given that the number of potential recipients far outweighs the realistic number of potential donors, why not let the donor (if they want to) specify (as I think they do on the US website) the type of person to whom they wish to donate and then select a receipient from a list of, say, 10 or 20 potential recipients?  These recipients must be happy to know their donor, and would surely be tested anyway to allow them to be matched to the donor.  Then the beauty parade is avoided as the NHS will have made their choice of the list on the basis of suitability and need (which is how I assume that they select a recipient already).  The current system could work alongside this for those who prefer anonymity.

I'm sure that more will be heard about this website...

Changing the subject slightly, I never mentioned the result of my fasting blood sugar test.  My score was 4.5 which of course is meaningless to most of us, but when I mentioned this on the phone to one of the transplant co-ordinators she said that 4.5 was "absolutely normal".  After my experience with the renal ultrasound (see this earlier entry), I didn't want to ask if she had omitted the caveat "for a man of your age"!

The Road is Long....

I'm very pleased to say that I have just received notification of three appointments for 10th August - that's going to be another busy day! These appointments are for a CT angiogram, a Glomerular Filtration Rate (GFR) test and a Renal DMSA.

The fact that I have progressed to this stage means that the tests two weeks ago were all fine - there would be no point in having an expensive CT scan if they weren't.  The other two appointments are to done in the "Nuclear Medicine Department" which sounds a bit worrying but isn't, apart from the fact that it isn't shown on the hospital map!  The "Nuclear" bit is because for each of these they inject you with a small amount of radioactive fluid.

I don't yet know what DMSA stands for, but the test "demonstates the location and function of my kidneys".  At least I know now that the GFR test will provide a real GFR figure, not an estimate, which is what eGFR means as the "e" in "eGFR" is for "estimated".  The neph at my tests explained why that is; the more extensive multiple blood sample test will give a truer figure than the single blood sample which was done then.  In this test they take blood samples at intervals after the injection in order to monitor how well your kidneys are dealing with it.  So this test lasts for up to five hours!  Since the Renal DMSA also requires a 1.5 hour wait for another blood test after the injection, it's going to be a long day; this time I will definitely be able to read more of my book, which I didn't last time as they were so quick.

Going back to the last set of tests, I had a strange feeling being tested by some specialist for something that I know very little about.  I just feel so detached from the process and watch with an interest which hardly accepts that I am actually the subject of their investigations.  I noticed this earlier this year during my colonoscopy (see this previous entry) - it was really strange being able to see the inside of my own lower intestine on a TV screen!  I rather think that the hospital specialists think that I am a bit odd - perhaps I am - as I meekly accept my fate at their hands and do precisely whatever they ask me to, without argument or apparent concern.  However, I don't think that this will apply much at the next tests as the last two will simply be injections and blood samples, with a lot of waiting.

Finally, here's a link to a very useful website all about kidney donation, which has lots of information, stories of experiences, blogs and links.  I have found that most of this sort of thing on-line is from the USA, but this one is British which is useful as the health systems are pretty different; it started with the story of Dianne Franks who in 2010 made a non-directed living kidney donations in the UK not long after that was legalised. [Edit: in fact, Di's comprehensive website gives an explanation of DMSA (above), so I'll cover that next time.]

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.