A New Malady Just for Kidney Donors?

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

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

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


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


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

A 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.

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!  

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.

My Brother

My name is Matthew.  For me, this journey started several years ago; my brother Tim mentioned casually that he had some problem with his kidneys and might need a transplant in the distant future if it continued to deteriorate.  He is seven years younger than me and so was probably about 47 at the time, which seems a bit early in life to be having such problems.  The thought then flitted across my mind that perhaps I should offer one of mine, but I heard no more about it and the problem seemed to have disappeared.

Then in February 2012 my mother asked if I had "heard about Tim".  It transpired that his kidneys had indeed deteriorated and were now approaching the stage at which a transplant would be required.  I called him and we chatted about his condition.  He said something about waiting for a (dead) donor and I at once said that he could have one of mine.  He laughed and said that I was about sixth on the list (we come from a large family).  Some weeks later I received an e-mail sent by his wife to those of us who had made the offer.  Basically the deterioration now was so much that the hospital had asked him to actively find a live donor, or rather two.  The first question is blood group; Tim's is Type O and the hospital will take the first two volunteers who are compatible and see if either is a match in tissue type as well; if neither is, then they will work down the list! 

Having once been in the armed forces I knew my blood group as it was embossed on my ID card. Personally I have that feeling in my bones that I will be the donor.  You might know the feeling as well; it's a feeling of certainty which I have had just a few times in the past.  Once was when I entered a competition (for me, a rare event) and was not at all surprised when I won; another time was when I wrote a letter to a national newspaper and just felt I knew that it would be published (it was).

Thus we got to a rather odd situation where five siblings had offered a kidney; we were asked to sort out between ourselves who would contact the hospital.  At this stage in the proceedings only one of the others seems to know their blood group so we are waiting for some answers.  In the meantime my own wife Jane has also volunteered as she also knows her blood group is compatible, being a long-time blood donor.