Thursday 24 October 2013

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 15th 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 16th 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.

Monday 21 October 2013

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)

Saturday 19 October 2013

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.


Monday 14 October 2013

Cross-Matching Explanation

Further to the previous post, I've now had a sensible explanation for the need for cross-matching blood immediately before the operation: it's to identify suitable blood for possible use during the operation as a transfusion.  If they don't do this beforehand then, in an emergency, they would have to use blood which was "probably" the right match but may not be the best match; the analysis takes a few hours and in an emergency they don't have that time to spare! Obvious really, innit? Why can't people tell you the simple answer in a simple fashion?

Possibly there might also be a cross-match with Tim's blood but, as was explained to me, this is more of a formality as there is no likely reason for either of us to have suddenly produced antibodies, both being blood group O (universal donor).

Anyway, we're off in a couple of hours to London to avoid the morning traffic tomorrow - I wouldn't want to be late for admission at 10am due to the feared London rush hour (which seems to last all day these days), and neither would I want to leave here at 6am.

Friday 11 October 2013

See you Tuesday, Brother!

"I'll see you next Tuesday then, don't be late."  I think that was the moment yesterday when it hit home to both of us that we are almost there.  It's 20 months since I volunteered and at times things have moved slowly but the last few weeks have rushed past.

We were at the hospital yesterday, and it was the last time for me as the operation will be performed at a larger (and better known) hospital nearby. The purpose of the visit was, as ever, for some more blood samples; these were the ones for the last minute cross-match.  This had puzzled me a lot as no cross-match was done at the start of the process, which seems odd for such an important thing.  This has been explained to me and I think it is something to do with the fact that we are both blood group O, so there are no antibodies present, neither has Tim had any introduced by any treatment. (You can tell I am still a bit puzzled by this.)

Anyway, asuming that is still clear (and there's no reason why not) then we are all systems go to turn up on Tuesday for admission starting with a set of very last minute tests and various interviews/meetings.  They often operate on two pairs on the same day but we are the only pair being done next Wednesday.  This is good because it means there's no issue of being second and having to wait around until noon, so I'll be going down between 8 and 9am with Tim following at some suitable point during my operation.

Life has been a bit hectic as I have been finishing and handing over lots of jobs.  I think I'm finished outside but inside the house still has a few little tasks, and my churchwarden duties (of which there are a lot) are getting dumped on anyone I can!

It now seems that I am expected to hang around near the hospital for a few days until I see the surgeon again; this should now happen on the following Tuesday and, if all is well, I will come home that day. I'm grateful to another of my brothers for looking after both of us for that time - apart from accommodation I think he is also providing a taxi service for Jane to come and visit me (but we'll know more about that on Tuesday).  After I come home, I think they intend to transfer my care to my local transplant centre. I am very happy with this as I was treated really well by them when they did all my initial tests, and it will be good that they have the interest in my long-term care.