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?

Annual Check Again

Well, yet another year has gone by.   I attended the Churchill on Tuesday before Christmas for my annual "MoT".  I remain very impressed by the reception I get, as just one of many donors who must pass through their door. They always welcome me with a smile and even remember that the recipient was my brother (who they never met) when they ask after his health as well.

I have had one slight worry this year (see below); health-wise, it has been quite a boring year which, after all, is what one would hope for at any age but especially whe you are past 60! That reminds me of what the examiner said once when I had a pilot's licence and was doing a General Skills Test; we had done a couple of touch and goes and I called "Downwind - to roll" expecting to do another circuit; he immediately thumbed the button and called "correction - downwind to land" (i.e. a full stop landing). Then he smiled at me and said "I'm bored"! It's what you want to hear, isn't it?

My figures this year were much the same as before- notably creatinine 132 and cholesterol 6.0 - and everything else was in the right range. However, my blood pressure was even better than last year at 116/71 and the consultant was even more envious of that than he was last year!

In discussion with the consultant I found out that it is normal for creatinine to vary a lot and also that it is less if you have more muscle - this probably explains why Tim's figure is better than mine!

The one slight worry with my health was that, back in July, I suffered from gout - just the second toe of one foot and the middle toe of the other. At one time it was so painful that I was unable to walk more than 20 yards. It seems that gout is caused by something called purines. These are natural compounds found in many foods which, when metabolised, produce uric acid as their end product; gout is essentially a build-up of uric acid crystals in joints. My urate figure has been high since the first blood test in 2012 amd I thought nothing of it; now, studying the diet guide, I find that there are certain foods which are high in purines, which should be eaten in moderation if not avoided entirely. To my surprise one of these was something that I have eaten all my life, namely Marmite, because it contains yeast extract. The list also includes mackerel (and other oily fish) and stock cubes! So, I am now on a low (or lower) purine diet and we'll see what happens; the gout has not recurred anyway.

That's it for another year, unless something dramatic happens.

http://www.heyfordhoofers.org.uk/

Another Annual Check

Well, another year has gone by.  Actually, it's more than a year as the annual appointment was slipped by three weeks by the Churchill, and I attended there on Tuesday this week for my "MoT".  I was very impressed by the fact that the results were posted on PatientView at 6pm after being done at 1130am that same day!

The only slight worry I've had this year is that my creatinine went up at the six month point in June.  I think this was for two reasons: firstly, Tim and I reckon that creatinine varies through the day; you need to be well hydrated and, for a consistent comparison, have the sample taken at the same sort of time of day each time.  Annoyingly I forgot this when I made the appointment with my new GP's surgery in June and so it was not surprising that, at 8.50am, after just a bowl of cereal and a single cup of tea in the previous 10 hours, the reading was quite high, at 140. (They also did a cholesterol test even though I had not been fasting, so that was unsurprisingly very high.)

Secondly, the hospital's message about drinking more somehow seemed (to me) to be directed at the recipient more than the donor, and also it seemed to be "for a period of time" as opposed to "for ever"; I guess I was consuming only 1.5 to 2 litres per day in the form of tea and coffee.  So in late September I discussed fluid intake with the transplant nurse at the Churchill (as lovely and helpful as ever!) and we decided that I just need to drink more.  Since then, I have made a concerted effort to drink water, and also now I monitor how much I drink every day; I now have more like 1 to 1.5 litres as tea/coffee, and about the same in pure water, so my daily total is about 2.5 litres.  I discussed this with the consultant and he was happy with only 2 litres as a target, comprising half tea or coffee and half water or cordial.  He was clear on the need to avoid any drinks with salt (like what - Bovril or Tequila?), and even agreed that beer can count to the total, so long as you are staying within a limit of three units of alcohol per day on average - I reckon I average two units, although I admit to the occasional day in the summer when I had a couple of treble G&Ts or a couple of beers in the evening sunshine!

Having realized this in October and changed my habits for liquid intake, I have been hoping to see a decent improvement in things and I was pleased at a reading of 127 which is only 1 more than a year ago.  If I'm honest I would say that I was hoping for an even lower figure, having been so conscientious about my hydration; perhaps my focus on that is too late?

At least my worries about aches, pains and tiredness do now seem to be a function of age - I was worried that some of them were sounding a bit like Tim's symptoms before the transplant!

My blood pressure was good at 120/79 - the consultant expressed envy of that! Everything else was in the range apart from cholesterol.  He asked what I had done about this after last year's promise to see my GP about that; the answer was I had forgotten but my record showed that I had seen the GP in February - then I remembered that I had declined statins (as I reckon they make me sleep badly from a previous trial) and instead had made a few changes to my diet - less sugar, more skimmed milk, cutting fat off meat etc.  However, he thinks I should see the GP again as it's still a bit high.  Apart from that, hopefully that's it for another year.

http://www.heyfordhoofers.org.uk/

Annual Maintenance Check

I had my annual check at the Churchill Hospital yesterday.  They were all pleased to see me; I'm impressed that they remember me after just five or six visits in 2012 and a single one exactly a year ago.  It's quite surprising that they also thought that the year had gone very quickly (as did the family on the anniversary - see last entry below).  Everything was fine; my eGFR is still 53 (creatinine 126) which is exactly the same as the previous check in June, and also (as it happens) exactly the same as Tim - so my two kidneys have both expanded and are both doing the same amount of work in their separate locations.

I told the staff at the Churchill the story of my check in June at the GP, and they were equally horrified.  The transplant nurse agreed that an HCA should not be wearing a dark blue dress as it indicates a more senior status, and the phlebotomist was appalled at the HCA's comment after hitting my nerve.  For the full gory story see this entry below.

NB If you ever go to the Churchill, try to go by bus if you possibly can - the 700 goes from Water Eaton Park and Ride.  Yesterday there were people queuing at all the hospital car parks and I felt pretty smug!

So, it's a check at my new GP next June and another visit to the Churchill in 12 months.  I keep trying to stop doing this blog, so perhaps now this really will be it, unless something significant occurs.

A Whole Year

Well, it is amazing how a whole year has flown past; it was a year ago this week (Oct 16th to be exact) that Tim and I were operated on at St George's.

Tim's latest news a couple of weeks ago was that his eGFR was 53, which is exactly what mine was when last tested in June.  In other words, he is very well!  He had a couple of ups and downs in the first three months as the hospital tried to find a balance for his Tacrolimus, but he's been fine since February and has made great progress.  Since June he has been down to just one visit to the clinic every six weeks   He recently gave me another example of how well he is: he and his wife went for a cliff walk whilst visiting her parents in Cornwall; last year he was having to stop frequently in order to catch his breath and rest his aching muscles, and his wife had to wait for him to catch up.  However, this year on the same path he had no difficulty at all; in fact, he strode on so well that when he did stop, he looked back to see his wife trailing far behind!

I personally am very well and have had no real issue at all.  The operation was two days of discomfort (as opposed to actual pain) and that was followed by a couple of weeks of feeling delicate.  Since then I have returned to what I was doing before - lots of lifting and other energetic activities that go with doing things around a house.  This year I built a shed (from scratch, not a kit) and a low brick wall, plus a brick barbecue and some concreting, quite apart from doing lots of energetic things in the church when we had a building project.  One of these included helping to place our mediaeval stone font onto its base - this was a six man job as it probably weighs about 300kg!

My only downside is that although I have regained my strength, I do not seem to have the same stamina that I used to have.  I get fed up with a job quite easily after a couple of hours and have a rest for a while, then a couple hours more and that's it for the day; consequently my productivity is far less than when I was doing full 8 or 9 hour days a couple of years ago.  Perhaps this is just a sign of getting old?

Following my experiences in June - see this link - I have also changed my GP.  Although I complained about the treatment, they basically brushed me off and expected me to get over it.  Moreover, they wouldn't admit that there was anything wrong with their processes - yes, the doctor had seen the letter and no, the HCA was not expected to know what tests were required - so shouldn't the doctor have told her?  Also, the HCA was dressed the same as a nursing sister (and the same as my transplant nurse!), which I feel was misleading as she doesn't have that qualification.  I wouldn't be too happy if this was just a normal illness I had, but having donated a kidney and been treated so well elsewhere, I felt quite let down so I voted with my feet.

I have just sent Tim an anniversary card - unsurprisingly they don't sell them specifically for this, but Jane found one that was very suitable - something about him "being my type", with good wishes for many more such anniversaries.

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 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.