Kidney Donor Permanent Badge

Well, here's an interesting thing: a long time ago soon after my donation in 2013, I gave thought to marking myself with a tattoo saying "No Kidney Left Side" or something similar as a memento. 

That never came to anything then, but in August this year someone on Twitter posted a photo of their arm with a tattoo of their kidney donor badge. At once I felt that this was for me! So, a week ago, at the age of 68, I had my first ever (and probably last) permanent tattoo. Here it is, in all its glory:

 

My wife said that it was my decision, my daughter was a bit surprised, and I haven't yet told my son!

It's that Time of the Year!

Another December, another annual check up! Glad to say that I'm still fine - creatinine 129, BP 112/75 and cholesterol down a bit. After taking allopurinol for the last year, my urate level has dropped from 525 last December to 332; I now have just an occasional slight twinge of gout which lasts for a few minutes but am otherwise not affected at all by it.

I'm always delighted by the treatment at the transplant centre; this is the one where my initial tests were done in 2012 but the operation in 2013 was the centre near my brother in London. I arrived 20 minutes early due to buses being on-time and having just sat down was surprised to hear my name called. There were a good dozen other people waiting there and I felt almost guilty at being called before them!

Consequently I had finished with the consultant by my appointment time, and so had time for a chat with the same transplant nurse whilst waiting for bloods to be done. She is the same one who looked after me during the tests and she still remembers me and my recipient brother. I am glad that patients like me help make her job rewarding! She is frankly a real treasure and I would be disappointed if she left.

On the same sort of topic I should mention cutting my head on a Thursday at the end of November: I went to A&E at a smaller local hospital at about 3.30pm and was out (with the wound glued) by 4.40 which is pretty darn good in my book. Why do people criticize the NHS?

BTW, that's not the fastest turnround that I have ever had in an A&E. One Sunday about 20 years ago my back went into spasm and my son drove me in; they treated me and sent me out in just under a hour! I think that speed was explained by the time of day - at 2pm the expected sports injuries had not yet arrived. I do still see a chiropractor about my back when it starts to hurt.

Kidneys and Gout

In the last couple of years I have suffered from gout. The very first time it was so excruciating that I failed when I tried to walk from my house to the GP surgery, only 500 yards away!

Since then there have been recurrences which were not so bad, but I felt that they were getting more frequent so I asked my nephrologist about gout when I had my annual check up just before Christmas. This seemed like a reasonable thing to ask, considering that gout is caused by uric acid in the blood, and urate level is one of the many things which I have been tested for ever since I became potential living donor.

The common response when I tell someone that I have gout is "Isn't that to do with drinking too much port?" Instantly, you know that they need education!

Gout was once a problem which only affected the well-off so it was associated with what they ate and drank and, yes, one of those things was port. However, the point is that the average person at that time did not have a good enough diet to raise their urate level to the point at which they could be affected by gout. It was just the high consumption of lots of "good food and drink" which caused the gout in the well-off people (and principally the men, I suspect).

By the late 17th C, gout did start to affect the rest of the population and this has continued, generally thought to be due to the improvement in diet of the so-called working class. Research in the 19th C by the British physician Alfred Garrod identified uric acid as the causative agent into the causes of gout; the idea being that uric acid accumulates in the circulation and crystallizes into needle-sharp urate crystals. These crystals then lodge in the soft tissues and in the joints of the extremities –- classically, the big toe — and cause inflammation, swelling and an excruciating pain that was described memorably by the 18th century bon vivant Sydney Smith as "like walking on one’s eyeballs"! Because uric acid itself is a breakdown product of protein compounds known as purines – the building blocks of amino acids – and because purines are at their highest concentration in meat, it has been assumed for the past 130-odd years that the primary dietary means of elevating uric acid levels in the blood, and so causing first hyperuricemia and then gout, is an excess of meat consumption.

It is still generally thought that consuming foods which are high in purines will make you more likely to suffer from gout, and these high purine foods include lots of things which are otherwise good for you such as "oily fish" (omega oils) and "whole grain"! The list even includes Marmite and beer (both due to yeast). In a series of studies in the 1960s, clinical investigators first linked hyperuricemia to glucose intolerance and high triglycerides, and then later to high insulin levels and insulin resistance. The gout research effectively ended in the 1960s when the drug allopurinol was discovered which is effective at reducing the amount of urate produced. This cessation of research was understandable as gout is not fatal and so when a cure is found, there is no point in spending further research effort on it. However, the effect of ending research is that the commonly-accepted view is not challenged, althugh some scientists have said that "low-purine diets have a negligible effect on uric acid levels". I have been educating people about purines as the cause (as the bottle of port in my drinks cupboard has been there for about five years and is still not empty) but I have just found an alternative culprit.

That new culprit is that the rise in the incidence of gout in the UK might be linked to the massive increase in the sugar trade in the 18th - 19th C. It has been demonstrated that fructose consumption and uric acid levels are linked. The earlier researchers later admitted that they were unaware that sucrose is 50% fructose (and the other 50% is glucose, if you were wondering).

The hypothesis is that sugar (sucrose) and high fructose corn syrup (which is used in many foods) would constitute the worst of all carbohydrates when it comes to uric acid and gout. The fructose would increase uric acid production and decrease uric acid excretion, while the glucose, through its effect on insulin, would also decrease uric acid excretion. Thus, it would be reasonable to assume or at least to speculate that sugar is a likely cause of gout, and that the patterns of sugar consumption explain the appearance and distribution of the disease.

The trouble is that this is still only a unproven hypothesis. However, I offer it as a possibility for anyone who suffers from gout as it might just help them to cure the actual cause rather than simply address the problem with allopurinol for the rest of their lives.

Much of the above comes from the blog of Tim Ferriss (https://tim.blog/2009/10/05/gout/) where he presents it as the missing chapter from Good Calories, Bad Calories by Gary Taubes, a science journalist and author. I don't know if either of them are also medical doctors, but I know I'm not!

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.

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/