Friday, 7 July 2017

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?

Tuesday, 27 December 2016

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.

Wednesday, 23 December 2015

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.

Wednesday, 3 December 2014

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.

Wednesday, 15 October 2014

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.

Saturday, 2 August 2014

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.

Saturday, 14 June 2014

Routine Check-up

I was meant to have my routine check-up recently - six months after my last hospital check (at the Churchill) which was seven weeks after the operation.  This check was to be done at my GP's surgery by the practice nurse.  I have been absolutely fine since leaving hospital, so was not expecting any surprises.

I duly arrived at the surgery early on a Friday and was quickly called in by the health care assistant (HCA) - a good start which didn't last! She asked me what she could do for me? I said it was a check as per the letter on my file - I hadn't seen this letter but knew it simply said "please check his renal function" as I had checked that they had the letter when I made my appointment. So she took my blood pressure and then produced a needle, put it in my left elbow and took precisely one blood sample.  I said "just one?" and she said "yes that's all. All finished". Hmmm.  On the way home I realised that she hadn't even taken a urine sample.  Something wrong here.

The next Monday I had an appointment to see the doctor on a small unrelated matter.  As I was about to go I told him about Friday.  He took a look at my file and quickly admitted that she had wasted my time - the one sample had been sent for a report on my liver function!  "Let's start again" he said.  So it was back to reception for more appointments;  they said "how about ten minutes time?" which really surprised me.  So, ten minutes later, I was sat in the same seat as Friday with the same HCA who then seemed to have a much better idea of what was required, but failed to acknowledge that she has seen me very recently!

She then proceeded to do the worst job I have ever known of putting a needle in the crook of my left elbow.  As she put it in, I had what seemed to me to be an electric shock in my thumb; I've had at least three mains electric shocks in my time so I know what it feels like.  She had clearly stuffed the needle into a nerve!  I exclaimed that it felt like an electric shock, but she made no apology and added insult to injury by just saying "you moved - I'll have to do it again!!" As a result I now have a bruise measuring 5cm x 3cm in the crook of my left arm.

It got worse.  The doctor had also specified that I should also have a test for cholesterol, which necessitates fasting beforehand, so this was arranged for the Wednesday.  So, first thing Wednesday, I was seated there again with the same HCA and she asked for my left arm.  "I don't think so" I said, offering my arm with its worsening bruise.  She failed to acknowledge her part in this, and proceeded to insert a needle in my right arm; I now have a bruise in the same place on BOTH arms, and I had bruised only once in 12 or 15 blood tests in the last two years.

To my surprise my results appeared on PatientView by Thursday night: the important one is my creatinine which was 126 (eGFR 53), which I'm quite happy with.  I don't understand why they did that test on bloods on both days as it's always going to give a misleading result when I've been fasting (144/45 for the record).  Yes, my cholesterol was a bit high as well...

I have spoken to the practice manager about the failure of a doctor to specify the required tests, and also on the poor skills and lack of sympathy demonstrated by the HCA. This does NOT bode well for the future.