Ten Years On

Today is the tenth anniversary of my kidney donation to my brother Tim - hard to believe how time flies! I just want to say that I am very well and have had no issues at all in the last ten years. Tim is also very well and that, after all, was the whole point of the matter. He has been back to his normal energetic self since early 2014, and his family in particular have so enjoyed having their Dad and Grandad back with them.

I don't really intend to ever add any more to this blog. It has been therapeutic for me to write and, as a history of what happened, has been very useful to me (as my memory is slowly going!). Ten years seems a good place to stop; as far as I am concerned, ten years more of life for Tim was the sort of thing I was expecting as the outcome, and the fact that he is healthy now indicates he will probably get a good few more years as well - a real bonus!

As a final comment though, I would like once again to say that we both give a huge thank you to Sarah Heap and her team at St George's Hospital who looked after us so well. In particular I recall Sarah popping in to see me on the evening of my operation (earlier that day) on her way to do yet another transplant, and then again at about midnight when she was on her way home. She is a wonderful person, not just a dedicated professional but also a caring person, and I thank her.

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.

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.

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 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.

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.

My Brother is Boring!

I had been waiting for my own 6 month check (since last hospital check) in order to do a single update about both of us, but I've been messed around by my GP's surgery and I'll update that one when it all becomes clear!

My brother Tim is doing very well.  He had a routine biopsy in early May, followed by an appointment with his consultant. The result of the biopsy was wonderful - "totally clear", no signs of rejection, everything as good as could be expected.  Tim's dose of MMF has been stopped entirely, leaving him on a reduced dose of Tacrolimus only.  The consultant has discharged him back to local care, saying "you're boring!".  What more could you possibly want to hear? 

We saw Tim in late April and he looked back to his usual self, with a sparkle in his eyes and lots of energy.  He has told me a few details of the change in his life: 

"On Saturday we cleared out the garage, took photos, put some stuff on Ebay, went to the dump in the rain, went out to a party in the evening. I probably haven’t even been into our garage for 4 or 5 years – could never have done all that before."
  

And another: "The trailer tent is now gone, several trips have been made to the dump – I can put a car in the garage! Seems like a strange space to have. Vegetable patch is planted with runner beans, French beans, two types of tomatoes, swiss chard and potatoes all on the way. Grass is cut, hanging baskets planted – everything grown from seed. Cleared out the spare room – more trips to the dump. Can’t remember when I could last do all this sort of stuff in one weekend."

And another one: "Kidney function is pretty much back to where it was when I was first diagnosed (50% - 9 years ago??) and I was unaware then of anything being wrong."

Certainly sounds to me that he really has got his life back!  

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.

100 Day Update on Transplant

Following my last angry post a couple of weeks ago (see here), I feel I should update the situation on Tim.  He had a good recovery once he was out of the hospital's "care" and after being seen as an out-patient by the right (senior) consultant.  His infection has gone entirely and he has now had over ten days of low readings for everything critical (creatinine and Tacrolimus).

Last week he sent me one of those "really nice to get" e-mails in which he said that "I am feeling much better than I have since the op and for I don't know how long before that" and then another this week where he added "I just feel like doing more than I have been doing and thoroughly enjoying it!"  I think it's fair to say that my brother is well and almost back to his old self; that makes me very happy indeed.

As for me, I am just very thankful that I have been able to help him; our prayers (and those of several hundred others) have been answered in a quiet but dramatic sort of way, and we praise the Lord for his many blessings to us.   I am still amazed at how my own recovery was free from pain and I had no real issue at all in the entire process.  It was a surprise to realise that the 100 day mark was reached a week ago, which sounds as though it should be a call for celebration.  I have started to lift things and generally be far more energetic, so I have started work on some of the outstanding tasks around the house - all the things that were put on hold just before the op last October.  Now I just need the weather to improve!

Treatment of Transplant Patients

It was pretty clear to me as soon as we arrived at St George's for the operation (now three months ago!) that transplant patients, both donor and recipient, seemed to be very well treated. In the course of my stay in hospital (10am Tuesday to 1pm Friday) there were very few members of staff who didn't look and act as though they really were concerned for me.

Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.

In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)

However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking.  Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"

In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.

I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts.  It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?

Keeping Patients Informed

At my six week check, the consultant suggested that I could get access to "PatientView". This is an on-line IT system which does what it says - it lets patients view things about themselves, like their results.  My brother Tim has been using it for some time, but I hadn't appreciated that I would be allowed to use it as well.  It used to be called RenalPatientView but is now getting rolled out to include other specializations.  So I filled in the form as suggested and, after a very short wait and an exchange of e-mails, I now have access to this nice little system which allows me to see what their records have about me, from two different hospitals. This will be useful and interesting as I shall be going back for an annual check up for the rest of my life, and it will save me trying to keep track of things like the change in my eGFR.

Knowing that I was to get this access, I did not call to find out my results from Dec 3rd, but waited to see them on-line. The good thing was that my eGFR has gone up to 50, having been 44 a week after the op.  So my remaining kidney is manfully responding to the new demand placed on it.  I shall be following that figure avidly over the coming years; it will of course never again reach the giddy heights of 80 which was the sort of figure I had pre-op, as you can't expect that much of one kidney.  I'm quite happy with anything over 50, and it will be interesting to see where it settles.

In actual fact, this system is potentially so useful that I'm sure everyone will one day have access to something like it. One benefit is that you don't have to telephone for your blood test results - you just check the system a day or two later and there they are. This will save the staff time as well as saving the patient's phone bill. There's obviously a cost but the overall benefit to patients must be considerable, if only to take away that feeling of "there's something they are not telling me"!

Six Week Check

I had my six week check this morning - I think that's meant to be six weeks after the operation, but in fact it is now exactly six weeks since the surgeon checked me on the week after the op.  This little slippage is because the surgeon's discharge letter took ages to get to me, and I was waiting for it before booking the appointment. Eventually I gave up and booked it anyway. On Monday last week I chased them for the letter and on Wednesday it arrived, postmarked Monday.  Guess what? On Thursday a copy of the letter arrived, postmarked Tuesday! Sigh.

The check up was done at the Churchill Hospital where I had my initial tests done, and was absolutely fine. I don't have the blood test results yet of course, but I shall now be getting access to the patient view thingy on-line where I will be able to see lots of stuff about me.  

The consultant said that creatinine after the op was 149 which gives eGFR of 44.  In March it was 81.4, so it's on the right side of 50% of what it was. This is what one would expect as my remaining kidney is the larger of the two, and that 44 should increase a bit in time as my own kidney reacts.  So I look forward to today's blood test results (not forgetting that eGFR is really a very rough guide only).

My BP was checked twice today as the first reading was so low; the second was 112/71 which is still very low for me so I'll settle for that.  I'll have bloods done again in six months by my GP and then back to Churchill in a year's time for the annual check. I made a point of seeing the transplant nurse who looked after me last year - it's lovely when even a person who just managed my tests over a year ago looks pleased to see me, and looks even more pleased to discover how well I am post-op. I feel very comfortable with the prospect of being in their care if I ever have any renal issue in the future. I feel that they, like St George's, really do look after kidney donors.

Pain

It is now four weeks since Tim and I were operated on St Georges; the time seems to have flown past and I have healed well, while Tim is also doing very well. Most people I have spoken to seem to have an expectation of kidney donors suffering some considerable pain for a long period.  I suppose in a way that was my understanding, although I think that possibly people are just preparing you in case you suffer such pain; then, when you don't, you feel happy about the situation.

Whilst I was training in the RAF (a very long time ago), the often-heard mantra was that "pain is only in the mind"; an alternative was that "pain is for wimps". When younger, I used to endure the dentist without an anaesthetic as I found that the pain of some b*****y great needle being stuck in the roof of your mouth was far worse than suffering the treatment without anaesthetic. (NB Yes, I know things have improved since and yes, that old dentist was an absolute thug and an awful dentist to boot.)

Today, I mentioned my almost complete lack of pain in the last four weeks to a friend who told me of an anaesthetist he knows who, like the RAF, also believes that pain is genuinely in the mind. I have to say that I think I agree. Over the years I have learned to relax in the dentist's chair. You start with your neck and work down through every part of you, consciously relaxing the tight muscles; when you reach your feet you start again, as those ones will have tightened up again by then!

One fairly recent experience of severe pain was when I had a small growth removed from my upper lip. This was done as day surgery under a local anaesthetic which was administered by the surgeon. He said "short sharp scratch" and proceeded to stick a needle in my upper lip for the next two or three minutes! I lay there trying to relax myself and became aware of the absolute streams of tears flowing down the side of my face to my ears and thence to the back of my neck. I have never before or since experienced anything remotely so painful - there are, I am told, a vast number of nerves in your lips, and I believe it.  After the operation I said "You lied!" and he replied that he had to as if he told the truth then every patient would leave the theatre before the operation!

So, using the scale of my lip pain, I have been re-assessing the pain I have suffered in the last four weeks. Really, the worst pain was when my stomach generally objected to the whole idea and started acting up. The expanded stomach pressed on the largest wound which caused a significant awareness of its presence, but compared to my lips I don't think it even classes as pain, more just as severe discomfort. In the same way, in hospital I itched (a reaction to the morphine?) and couldn't sleep because I just couldn't get comfortable.  There were times on the first day when any movement seemed to require care and many movements were impossible, but I suspect that this was as much due to my brain simply stopping me from trying as opposed to actually experiencing pain. Even when I sat on the edge of the bed and then stood up for the first time, it wasn't painful but rather I was afraid of being rushed when I felt very delicate.

I have no doubt that I have been very blessed in this experience. I would not like to give Potential Living Donors the idea that donating a kidney is always as pain-free as my experience, as I am sure it is not. I know that I could even now suddenly find myself doubled up, especially if attacked in my midriff by some wayward child, and I am not even going to try to touch my toes!  We all react differently to pain, and I sympathize with those who suffer more than their fair share. However, I am sure that having a positive mental attitude to pain could be a solution for many people in a similar situation.

The Kidney Donation Operation - Oct 15th to 18th

This is my "diary" of what happened to me in hospital.  It's a bit long but it is intended as a fairly factual account for the benefit of anyone who wants to know what happens! You may wish to ignore it and scroll down to the entry for Oct 21st if you want to read headlines, opinions and emotions.

Tim and I were admitted to St George’s Hospital, Tooting on Oct 15^th at 10.00am.  This timing, with a promise that we would be let out for a meal at 7.00pm on condition that we were back by 9.30pm, seemed slightly generous to me as I couldn’t see how we could spend an entire day doing admission.  However, we had a very busy day of interviews, form-filling, tests and a few injections, all of which would never have allowed me to read a book for more than a few minutes. Even Kathy (his wife) and Jane (my wife) did not really have time to be bored, and they were included in the drinks provided.  For the day there were no beds available (and they would have been pointless anyway) and we were given sole use of a day room (with TV) reserved, it seems, for precisely that purpose.  Tim had a small issue to be resolved so although we went for a quick meal at 6.05pm, he had to be back by 7.00pm. Soon after we returned, Tim was allocated a bed but I had to wait for one (in a different bay, deliberately) until after Jane had left with Kathy, and so I did not sort myself out until almost 10pm (after watching England beat whoever it was in the last World Cup qualifier).

My schedule for the 16^th was to have a shower and shave as soon as I woke at about 6am, and then get dressed in surgical gown and surgical stockings.  These stockings were knee-length and have a hole at the toes; this hole is really annoying as it gets wrapped around your toes in uncomfortable ways, and needs constant adjustment later – I got very good at asking anyone who came (regardless of their position) to sort them out for me.  I was told later that the hole has a purpose in the operation so that they can see your toe-nails which are a useful indicator of your condition.

Thus before 7am I was sat there ready and waiting for something to happen. Slowly people wandered past and did or said things.  One was the nurse in charge of the night shift who said that she was expecting the anaesthetist as he hadn’t done his form (which she was clutching), and then she looked worried when I said that he came yesterday and definitely filled in a long yellow form; later she returned and said that she had found the completed form filed in the notes in the wrong place! Tim and I had a nurse assigned to (just) us for our time in hospital, and he arrived at 7.30 to check my preparations.  Then he accompanied me as we walked to the operating theatres at 8am after I had a quick goodbye with Tim, who would follow later. St George’s overlap the two operations as much as they can in order to minimise the time that the kidney is uninstalled, so his would not start until they were almost ready to remove the kidney.

The same friendly anaesthetist met me in his room which is between the two theatres. His West Indian assistant reminded me of a friend in Bermondsey and called me “darling” in the same way that she does sometimes. Then he put something into the cannula and the next thing I remember was waking up in “Recovery” (which I keep on calling “Resuscitation” by mistake!), being told to “wake up, it’s all fine” or similar. It turned out that it was about 2.15 and I had been there for about an hour; given that they spent a while sorting me out (intubation, positioning, covering etc) in the theatre, I had actually been operated on for 4 hours, which was longer than I expected. Within 30 minutes I was fairly conscious, in time to see Tim wheeled in beside me and be told that it had all gone fine for him as well. Looking across I could see two large bags of fluid – one was largely blood and the other was definitely urine, so I thought to myself “well, it’s working, so that’s all right”. I think Tim actually came round enough for me to catch his attention before I was away down to the Renal Ward at around 4pm (after a delay getting a porter). Once installed in Bed 5, before I could take stock of my surroundings, there was a relieved Jane, having ignored instructions and been hanging around the hospital since 1030am! 

Now, I knew it was inevitable that there would be a number of things attached to me: there was a catheter, a wound drain, an oxygen pipe under my nose and the supply from the “Patient Controlled Analgesia” (PCA).  I also wanted to have available to me the call button on its lead, the control to use the PCA and the control to do things with the clever bed. I now had two cannulas (“cannulae”?) on my left hand, both of which tended to catch on the bedclothes.  This adds up to a large number of things draped on and around me, so it is hardly surprising that I felt uncomfortable, especially remembering the stockings which were now making their presence known. The PCA is a device which gives me a regulated amount of morphine and also allows me to administer extra doses through the system at my command, but it is set up so that you cannot overdose.  I was encouraged to use it generously before pain hit me, but truth be told the side effects were probably worse than the pain that I was suffering. 

Apart from some abdominal gas pain (mostly indigestion, I think) and the same gases pressing on the main wound, I felt pretty good.  I was also feeling hungry and so the sweet young woman doing the meals found me a yoghurt but this was a mistake as eating less than half of it gave me additional indigestion! 

Jane left at about 8.30pm and I thought about getting some sleep.  However, there was sudden activity and the occupants of the other beds in the bay were on the move; the nurse in charge explained that they needed a ladies bay and that I would be moved to Bed 1 which is a single room! Great excitement – I might be able to get some darkness, peace and quiet. So my bed (with me), my table and cabinet, were wheeled off, accompanied by other assorted items such as the PCA. Shortly after that, the surgeon looked in; she was on her way to do a transplant - somewhere a family was grieving, but someone on the transplant list had received "the call". She also popped in when she finished after midnight, which was sweet of her.

It is not really surprising that I had a poor night’s sleep, with regular interruptions for “OBS” (observations – blood pressure, temperature etc) and “MEDS” (medications, of which I have no real memory but I know that some were to counteract the side effects (e.g. nausea and constipation) caused by other things). It also did not help that once I was propped up, my bedside cabinet was now behind me and I could not stretch or reach, and then, once or twice, my jug of water was left out of my reach. I developed a tactic of asking whoever came in to do anything I needed regardless of their responsibility, so once it was a doctor who closed the blind and adjusted the stockings. Once, when I wanted to know the time, my watch fell off the table and I managed to lower my bed so that I could see it then shine the light on it. Somehow I forgot about the call button for this purpose!

Following an operation, the night is there to be endured rather than enjoyed, so the arrival of the Thursday morning activity was a real joy.  Unfortunately that started with a visit by the duty registrar at 5.05am (I’m not kidding!); twenty minutes after she left there were more OBS and twenty minutes later there were more MEDS, so I had no sleep between 5 and 6 and that was really when I felt I might actually have got to sleep. Drat.

Eventually there was the ward round. This is a semi-formal visit by the entire team plus a number of hangers-on, so it was interesting to see the surgeon plus at least three other doctors, plus three nurses and about four students all try and fit in this small room.  The form is that one doctor (the 5 o’clock registrar above) introduces me and my case, everything is considered (OBS, fluid input/output) and after questions then they decide what to do with me. One question is always whether you have had a bowel movement (Eh? I’ve eaten nothing since Tuesday evening and my bowels are in shock – what do you think?). The decision was to release me from all the connections except for the drain and changes were made to my MEDS – from now on I was only on paracetamol for pain relief. The really impressive thing was that the doctors in turn rapidly say what they want and the nurse in charge does not seem to write a thing down, but it all seemed to happen.

So, soon after, I was almost free (just that wretched drain with the plastic bottle on the end).  The removal of the catheter means that you have to record your own fluid in/out (and there is a lot going out, frequently!).  Come lunchtime, although I tried I could only face a steamed pudding dessert – no main course. It was the same at dinner time.

Just after lunch someone arrived and announced, without warning, that they were going to weigh me.  They didn’t seem to realise that I had not got out of bed since the operation, so it was with some trepidation that I attempted this slowly. After being weighed in a sort of special chair, I sat back on the edge of the bed feeling none too good – that had all happened far too quickly for my liking. However, I resumed my position on the bed and slowly things got better.  A few minutes later the surgeon appeared and asked if I had seen Tim yet? No, I had in mind that I should be waiting for the physiotherapist.  Forget that, get up and see him was the surgeon's instruction so, with the help of Jane and the surgeon, I got to my feet and put on my dressing gown (and the drain bottle fitted in a pocket).  This time it all felt much better and it was good to go down the corridor and see Tim.  At the nurses’ station was the physiotherapist...

Tim was looking good and I only stayed a short while as some of his family had arrived. Back in my own bed, some of my family arrived as well. Then the surgeon, consultant and a couple of other doctors came to see me (not doing a ward round, just a visit) - again, lots of people in the small room. One of my visitors was another brother, Duncan, who is a GP and with whom I was to stay when I left hospital; Jane cleverly introduced him to the surgeon and consultant and I am sure that this had no small part to play in my early discharge. So it was already quite a hectic afternoon when three of Tim’s young adult family came to see me – all beaming and smiling, so happy to have seen their father looking so well, and I felt quite humbled as they each, in their own way, thanked me for what I had done. Words were actually unnecessary as their thanks were visible in their eyes and faces. Later on, everyone left, including Jane, and then I was disturbed by another of Tim’s sons who was not to be left out.  Fortunately his mother took him away fairly soon, as I just crumpled with the emotion of it all. This was an aspect that I had not previously considered at all – the gift was almost as much to these loving kids as it was to their dad.

After all that it would be good to say that I had a contented good night’s sleep, but I didn’t. I was all settled down comfortably when the nurse came in with an “I’ve got bad news” look on her face. “I’m really sorry, Matthew, you’ve got to be moved - we need this room for an infection control case.” “OK, when?” “Well, right now actually.” There was a bed for me in a 4 man bay but she reckoned I would have more chance of a good sleep in the dialysis room which was empty, so there I went, on foot this time.  I lay on my bed with my earplugs in, thinking that I was free of pain, quite comfortable considering and very tired – so apart from the gurgling machines, why couldn’t I get to sleep? The answer soon came, although I didn't realise it at the time. At about 10pm someone came to do my meds and my temperature was up and my O2 level down; the next OBS were done by the nurse (temperature 38.8!) and then, at midnight, the duty registrar took some blood. They thought I might have a slight chest infection and needed an X-Ray, so at 2am I was wheeled by a burly porter through an eerily deserted (and chilly) hospital to A&E where a bored duty radiographer sat huddling under a blanket - at least she could now feel useful! Back to my bed and at about 4am I was given a huge dose of antibiotic through the cannula. 

By 7am my temperature was back to normal and I was back in the proper bed in the bay, ready to face the ward round with confidence. The surgeon popped her head in when she arrived - she had gone into the single room and found that I had been moved, and said that she would be back soon on the ward round. In fact it was quite some time before they came but I need not have worried – the consultant said quite clearly that he thought that my recovery would be faster in my (doctor) brother’s home than in the hospital and so it was agreed. All that was needed was the removal of the cannula, the drain and my dressings, provision of a large bag of medication and some instructions; these were all duly carried out and, by 1pm, I was shuffling out of the entrance to the car park to be driven to Duncan's by Jane, a mere 48 hours after the operation.

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)

Update after Discharge

Well, the headline news is that all has gone extremely well ("textbook" operation) and both Tim and I are fine. I knew that things had gone OK when he was wheeled into Recovery beside me with this enormous bag full of urine attached to his bed.  His creatinine was measured at less than 200 immediately after the op and he told me that he had NEVER known it that low before - it was above 200 when he was first diagnosed six years ago and was about 400 before the op.  It was down at 140 at the last count which was, apparently, less than mine which was 154!

I was mobile by Thursday afternoon and then was discharged on Friday at around 1pm, exactly 48 hours after being taken from the operating theatre to the recovery area; I don't think this could have happened more speedily - even the most optimistic guess beforehand was for a Friday late afternoon discharge, with Saturday being more likely. I have had a couple of bad night's sleep but there has been remarkably little pain or discomfort, and a lot of mobility has already been restored (but I AM still being careful).

We are now spending a few days with Duncan (next elder brother) and Diana. They live less than 30 minutes from the hospital and he happens to be a retired GP, so the hospital knew that I would be in good hands with Jane and Duncan around.  Nevertheless the Renal Team emphasised that I should contact them or even just turn up AT ANY TIME if I had any issues at all.  I am scheduled to see the surgeon and have a few tests on Tuesday; if all is fine then I will return to home in the countryside, and be in the care of my local transplant centre.

In the next few days I intend to tell a more detailed story of my time in hospital but right now I would just like to express my thanks for the care I received in hospital; from the surgeon Sarah to the lovely Olga who served our meals, everyone was absolutely wonderful and I thank them from the bottom of my heart. 

Both Tim and I have been amazed at the support given from friends all over the place. It is truly humbling to know that so many people are supporting you in prayer, and that support includes lots of people who I don't even know. We are so grateful for this and I am sure it has eased my path through this process.