Researching Kidney Donation

Looking back over the six years of this blog, I have been most gratified by the response of many people who have found it helpful. I started out by trying to fill a gap which I perceived in doing my reasearch - namely, that it was hard to get good information on-line about the process of donating a kidney - so I wanted to be clear about what actually happened to me; the blog also fulfils an unexpected purpose as it provides a wonderful reminder of exactly what was done to me, as I wrote entries very soon after things happened and my memory of that time is fading!

It is true that there's lots of other data out there, but I found an awful lot of stuff that was so dated (or even old but undated) that it was positively unhelpful and misleading - things like the old method of cutting you wide open and removing a rib - I am amazed that people did subject themselves to that, and it's been done laparoscopically now for over 20 years, I think. There are also a lot more stories which are so emotional and detailed that you can't easily find the little nuggets of information which would answer a particular question. Then there are the others who don't even tell you which country they are in (I'm in the UK), which is quite important as things like testing are done quite differently, quite apart from how the hospital is run and the important question of who pays.

It does annoy me that there are many websites (I won't give links) which emphasise the negative aspects of donating a kidney. Yes, sometimes complications do arise but the probability of that is very low; it seems sad to me that these sour articles keep on appearing and possibly deter potential live donors from further research. There is one particular US site where an individual seems to have taken upon herself the task of educating the public about the risks; she makes many valuable points and I agree with her about the lack of good data about donors post-op, but she glosses over the positives. I wonder what her motivation is?

However, make sure that you find a balanced set of information preferably, if you are in the UK, from UK websites. I have mentioned Di Franks before; she was one of the first altruistic donors in the UK and her website  is still one of the most comprehensive there is.  Don't just take our word for it, find out all you can, ask questions and satisfy yourself about the risks to yourself. However, I still think that I could not have lived with the knowledge that I could have helped my brother, but I hadn't donated and he had then died. When you look at his quality of life now, of course it was worth it!

I would like to think that the single entry on this blog of which I am most pleased is my top ten tips for potential donors. These were created with the specific aim of helping other people to prepare for their operation, and at the time of writing that entry has had 265 page views. If you haven't read them, then have a look as I think they are still most helpful.

Recently I found a website called Feedspot which has a link to "30 top kidney donor blogs" here; this blog is the 7th on the list and, in fact, is the top one actually written by a donor.

Just to emphasise, I am perfectly well apart from an aching back with which I have suffered occasionally for 20 years, and the recent occasional twinge of gout which I am unable to link to my kidney donation 4½ years ago!

A New Malady Just for Kidney Donors?

I read on another blog recently of a new malady that affects some/most(?) kidney donors. It certainly describes me very well! It is called "Emotional Incontinence" which is the tendency one has to well up at almost any mention of the operation and, more specifically, at every mention of how well the recipient is doing.

In my case, it's my brother and he really is doing amazingly well - you hear about how someone needs a kidney donated in order to get their life back but it is absolutely true! We in the wider family did not realise how unwell he was, but his (adult) children certainly knew. Basically he took ages to wake up, then a long time to get up, followed by a breakfast and off to work feeling bad. Then he would work for a few hours before giving up and going home early, leaving others to correct his mistakes. Going out in the evenings was almost impossible as he was so tired and he would languish in bed for hours before doing it all over again.

So when you get e-mails describing how many things he has done at the weekend, like clearing the garage, going to the tip, painting a room etc, you start to realise just what his life was missing before the operation. (Now I'm starting to well up as I type!)  One e-mail from him was about getting up in the morning and making his wife a cup of tea. "There is absolutely nothing strange in that, except for the past 18 months that has never happened. Previously after 8 hours solid sleep a cup of tea would arrive to wake me and 40 minutes later I would be able to keep my eyes open. After waking up every morning with pain in my legs, back, chest or neck (or even all 4) and heavy limbs it is a pleasure to lie in bed at ease in my own body with no pain - it has all gone overnight."


Nothing beats an e-mail like this one from his 25 year old daughter which says "Last year we were doing well if Dad was still awake in the afternoon! We will always be so thankful for what you did for our family- giving us our Dad and Grandaddy back. Words cannot express the impact that you've had on Dad, Mum, me and the boys, other halves and grandchildren." I think any readers should be welling up as well after that!


Anyway, I had my 6 monthly check at the GP recently. Nothing to report really - everything is very constant (even if my eGFR is a bit LESS than his!) But it's always nice to know that in fact I still have absolutely no after effects of the donation, and am just as well as I ever was - after all, that's why we get so much testing before the op, isn't it?

A Family Wedding

I went to a wedding recently - a nephew, Tom, was getting married.  Tom is Tim's son and that made it a bit special.  What made it a bit more special is that they were having the reception at the same hotel in London that Jane and I had our reception in 1974.  In fact, it was almost exactly 40 years ago - all bar 8 days - so we decided to stay the night and really enjoy the event.

You can imagine the conversation when I booked:
"Shall I send you the details of how to get here?"
"No thanks, I've been there before."
"When was that?"
"For my own wedding reception, almost exactly 40 years ago."
"Oh wow, how lovely - we'll see if we can do something for you!"
And they upgraded us to a lovely room - our thanks to the Richmond Hill Hotel.

It was also a lovely occasion for Tim's family especially.  Last September his eldest son had got married in Cornwall, and Tim could hardly make the journey. He had no energy and would probably have stayed at home if he could.  All his family were so aware of his condition last year, and saw how he was looking (and behaving!) this year; one would not have known that this was the same person as last year.  It certainly struck me that he was looking so happy and healthy with those lovely sparkling blue eyes and lots of energy; if I had not known, I would never have guessed that he had been so ill so recently.

Then Tom mentioned me in his speech and I am afraid I once again demonstrated how emotional I have become since the operation. I would like to have stayed nonchalant whilst smilingly acknowledging the prolonged applause from the assembled gathering, but I just collapsed in tears.  Tears of joy, I think, but I just see myself as a very small part of this whole miracle.  There's the many hospital staff who did all my tests, the surgeon and her staff who actually did the operations and who looked after me post-op; then there's my wife and family, who supported me through the process without ever questioning my decision or commitment, and my brother Duncan and his wife Diana who looked after me for a few days when I was discharged.  Then there's Tim's family who have all been so lovely in thanking me.  Finally there's the fact that the whole thing is a miracle of science, a genuine miracle from God who gave me the faith and used me to show His love for Tim and his family.  I just feel so grateful and small. And happy.

Kidney Donor Day

I went to an event entitled "Kidney Donor Day" recently. This was held at St George's and they invited all of the 2013 donors; it wasn't the whole day of course, just an hour in the morning with presentation of a certificate each, some photos, lots of chat and some food.

There were about 15 or 18 donors there; it was noticeable that we were mostly older people, presumably because the younger ones were at work!  Sarah the surgeon thanked us all ("you can only do this once"!), made the presentations and gave us some figures. She said that this had been a record year for them: there were 45 live donors last year at St George's, and 140 transplants in total; there were five non-directed donors so I presume that these are not included in the 145 as they would have been to recipients elsewhere. (I hope I have remembered those figures correctly.)

It was a pleasant way of spending a day, and seeing the staff again.  However, I left with a funny feeling inside: this was completely over.  I can indeed only do it once and I've done it.  It does rather raise the question: what can you ever do only once (when alive), as opposed to doing something for the first time? There are a few similar medical things like having your appendix or gall bladder out but these seem entirely medical as opposed to altruistic.

I am very well and so is Tim; he wrote in a recent e-mail that "I feel better than I have felt for I do not know how many years". We now compare creatinine levels - it seems that the two kidneys are both performing even better now they are apart!  I am now getting my old energy back, and it does seem a bit harder than it used to but there again, I am now old enough for a Bus Pass.

I will possibly post a photo of the event when they are received, and then I'll come back here for the year anniversary in October.  I hope that my regular readers have found my story interesting, and that reading these experiences will benefit anyone thinking of donating a kidney. DO IT! There's nothing to be frightened of, it's a great experience and it's a wonderful gift to give.

He Ain't Heavy, He's My Brother

Before this operation, I have only really been concentrating my thoughts about my brother and what this would do for him.  After my discharge on Friday I have been back on both Saturday and Sunday to see him, and he is literally "in the pink"! I have not seen him looking so well for several years. He was discharged today and now will have a lifestyle change to cope with the anti-rejection drugs.

Kidney donation is called "The gift of life" by many people and it really is. Instead of hardly being able to work, and going home too tired to do much at all other than sleep, Tim will now be able to live his life; each day was simply survival but I think he now has sparkling eyes and an obvious energy. I had hoped and prayed that this would happen and it has, and I am so glad to have been able to help him.

However, the thing which I had not really thought about at all was the effect on the rest of his family.  This hit home to me last Thursday afternoon/evening as four of his adult children came to see him just over 24 hours after the op.  Then, one by one, they popped in to see me in a separate bay. Without exception they were smiling broadly and just delighted to see the colour of their father restored to something pinker and less stressed. One by one they each thanked me for what I had done - they really didn't need to do this as I could already see it in their faces.  After they had all gone I wept as I thought about what had I actually done? In effect, I have given them their father back, and I honestly did not realise that the gift of life was almost as much to them as to him.

There's a song from long ago (when I was a teenager) sung by The Hollies, which has been reverberating through my mind for the last twenty months. It's called "He ain't heavy, he's my brother" and I think it got to No 2 in the charts in 1969 (I said it was a long time ago).  See https://www.youtube.com/watch?v=Jl5vi9ir49g.  It's got a lot of good phrases, some of which I have used as titles of these entries; it also summarizes fairly well the reasons why I've done this:

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother
So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother
If I'm laden at all
Then I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another
It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother
He's my brother
He ain't heavy, he's my brother...

(B. Scott and B. Russell)

HTA Interview

Getting really close now - less than three weeks.  Yesterday was the HTA (Human Tissue Authority) interview.  They have a legal duty to be satisfied that I am under no duress or coercion, and not being rewarded in any way for donating. As part of this, you have to prove your relationship to the recipient, which we did with full birth certificates (NB not the abbreviated one as you need parents' names on it) and lots of old wedding photos for ourselves and some of our siblings.  We have often had a photo taken at these events showing the seven brothers in order, with the new bride in the middle - never thought these would come in handy!  The only worry I had was that I don't look as young as I was, so I also took an old passport to prove that it was me in the pictures.

The HTA also want to be assured that the donor understands the risks of donation and the possible things that could go wrong, so a decent read of the four page HTA document is required, as well as listening carefully to the things that the surgeon said in our earlier interview. It all went well and the interviewer said that she was satisfied, so that's a done deal unless there was something fundamental that she forgot to ask.  I also had a few pre-op things done - some MRSA swabs, some more bloods (as always!) and a fasting abdominal ultrasound, which was done by a doctor and he pronounced that there were no issues seen.  NB I don't know why this was needed - did they think my insides might have changed since the last one in August last year?

The next step is the final cross-match check which will be done six days before the op - another visit to London - and then everything else will be done the day before the op.

Starting to feel a bit nervous or apprehensive - the same sort of feeling as the imminent arrival of a long-awaited exam day.  As I've said before, this is all the sort of thing that I had expected as a natural consequence of making the donation decision last year, so it's no surprise really, just a realization that the summit seen from afar is actually getting quite near!

Less Than Six Weeks Now

It's funny how things change.  Last year, I was expecting to have the operation quite quickly and time seemed to pass quite slowly as eventually it dawned on me that actually it wasn't going to be that quick.  Then we had the false start back in March when we agreed a date in May only to be over-ruled by the team meeting.  Now it seems an age ago (i.e. early July) that we agreed the operation date (Oct 16th) but suddenly I realise that it is just six weeks away. That's the sort of thought that makes your stomach flip a bit as you appreciate that it really is going to happen.  Soon. Voluntarily.

Back in June I made an analogy of this experience to a parachute jump which I did 20 years ago (see this entry).  As time passes I am even more convinced that it is a very good analogy for kidney donation.  I volunteered for that jump, and it never crossed my mind, once that decision was made, to opt out.  The following through with actions was a natural consequence of the decision; I didn't keep asking myself "why am I doing this?", I just got on and focussed on what needed to be done, the next task.   

I think that is exactly how I feel now.  Right down to the idea of going into a hospital as a very well person and coming out as a not so well person who needs time and attention to recover. The decision is made; my brother needs some help which I can provide.  I just focussed on the next test, the next visit, and kept on doing it.  At every test I was surprised that I kept on passing them! How would I feel later in life if either I had not volunteered, or else I had got cold feet and opted out after a few tests?

I am not really surprised to be a form of answer to prayer.  It was said a long time ago that you shouldn't pray for something unless you were prepared to be part of the answer!  I really feel that I was called to volunteer, that this task "had my name on it", and that this is one of the things that my life is all about.

Anyway, it's the HTA interview in less than three weeks, plus another abdominal ultrasound for good measure.  I really found the last one a bit odd - two young women (one was a trainee) staring intently at my abdomen and the picture that appeared on the screen.  My age is more than the two of them together. That really makes me feel old - they probably think of me as almost geriatric!

The Waiting is Over

Well, it looks as though the waiting is over.  Tim's latest results were not good and he saw the consultant today; as a result they have scheduled a transplant for end May/early June (three months ahead is normal). 

Now it depends on me, it seems.  Nothing is fixed for certain until they are certain about me, and there are a number of things that are still required or need to be repeated.  Remember that I had all my testing last year done at my nearest transplant centre, and that I have had no more than the odd telephone contact with my brother's hospital - I've never been there.  Hence, I am expecting a call at any time to talk about what else needs to be done, such as repeat tests and various interviews such as with the HTA. 

Tim is being very good, saying that he wouldn't be offended if I changed my mind, but frankly that's not something that I have really considered.  I saw the inside of three hospitals last year (as a patient or for donor tests), and that has not put me off; as I said at the beginning, I felt that my name as on this when I first heard about his illness, and that conviction is still with me.  After all, he's my brother!

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"!

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!

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?