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"!

A Surprise Gift

I had a small package arrive in the post on Friday. It didn't look like a Christmas present, and it's a bit soon for that anyway.  The padded bag was about A4 size and an inch thick, with an unfamiliar postmark - I don't know anyone in Bristol. Opening it revealed a small box and a letter from the Chief Executive of NHS Blood and Transplant which thanked me for my donation.

This is what the box contained:

It's sterling silver and about 2 cm in diameter.  It's a design by Liz Welch which incorporates a crossed anchor as a symbol of hope and an Ankh to represent zest for life. It also looks to me like one person reaching out to another.

The idea of an award had been puzzling me. In hospital after the operation, the transplant nurse had mentioned something about an award, but this (understandably) was not very high in my priorities at the time so I had (most unusually!) asked no questions.  Subsequently, I had looked on-line for more information and all that I had found was the new Order of St John award (see this link) which seemed to be for the relatives of deceased donors and not living donors (although some websites were not clear on this). Rigorous searching for an award on the NHSBT website revealed nothing relevant and so dismissed the question; however, having received it, I now realise that I should have been searching for "badge" not "award"!

Anyway, it looks good and I shall wear it with pride whenever I am wearing something appropriate to put it on - I'm not sure it looks right on a jersey or rugby shirt!

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.

Ten Tips for Potential Living Kidney Donors

I have some tips which any Potential Living Donors (PLDs) out there might find useful. Some of these tips I learned early on in the process, but others it was too late when I realised what I should have been doing, so you might benefit from my mistakes.  Some don't apply if you are making a non-directed donation.

1. Be positive. Make your decision to donate up front, and then go through the process which follows. This will make everything flow more easily as the staff will recognise your commitment; moreover, it will encourage your recipient when he/she starts to feel guilty about putting you through this.
2. Get fitter. It’s a long process of approval, so use the time to improve your physical fitness (especially your abdomen) before the operation.  This will both help the surgeon in the operation and aid your own recovery.
3. Take charge of the testing process. Never leave hospital without knowing what the next step is, or who will tell you, and when. Phone them for test results, as they tend to operate on a "no news is good news" policy. If you think you’ve already done a planned test, don’t be afraid to question the need for a repeat (I avoided at least one chest X-Ray, one ECG and a long walk around the hospital by questioning). 
4. If in doubt about anything, phone the Transplant Co-Ordinator and ask. This will show that you are interested and committed. I felt that each time I phoned that I was re-volunteering to donate; they don't want to be seen to put any pressure on you, and my call confirmed my commitment.
5. Get some ear plugs for the hospital stay after the operation. An eye shade and lip salve may also be useful, but the ear plugs really were essential for me. At least when I had trouble sleeping, it wasn't due to the noise!
6. Always take a book to testing appointments. You never know how long you will be.
7. Research the internet with care. I found that a lot of stuff on the internet is either/both from the USA (and hence slightly different) and/or wildly out of date - things have moved on so fast in recent times that anything dated before about 2000 is hardly worth reading. Don't be scared off by stories of horrible procedures involving removing a rib to access the kidney which took the donor longer to recover than the recipient; this is a prehistoric practice and is NOT how it's usually done now.
8. Help your recipient.  He/she may actually be more ill than you realize, and so will just not be able to do much research on the internet (Tim “worked” in a tired haze and then went home to sleep).  Do some research for him/her as well, and don't assume that they have a good knowledge of the operation and the time after - check up on what they know so that you can help them.
9. Feel valued. Each transplant costs roughly the same as a year’s dialysis so every PLD has a real financial value to the NHS. If the transplanted kidney works for 10 years then you will have probably saved the NHS between £300,000 and £400,000 according to the figures I was told.
10. Think of the wider effects. I was honestly surprised by the impact on my brother's family; they were the ones who had seen him deteriorate close-up, and the effect on them was wonderful (and emotional). Also, people in his church who I have never met have sent me messages of thanks for giving them their friend back. It really gets to me, this sort of thing. As I said a few days ago here, the Gift of Life is not just to the recipient but it goes far wider than that. It's the best thing I have ever done and I'd do it again if I could.

I should also include here two very useful websites:

Firstly, Di Franks' website http://livingkidneydonation.co.uk/. This focusses on altruistic (non-directed) kidney donation, as she was one of the first in the UK to do so, but it has a host of information which any living donor will find useful.

Secondly, the National Kidney Federation http://www.kidney.org.uk/organ-donation/living-donor-lkd-info-roche/.  I didn't find this until recently, or more possibly I did but failed to notice the need to scroll down! There is lots of information concisely presented all on the same page.

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.

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.

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.

HTA Interview

Getting really close now - less than three weeks.  Yesterday was the HTA (Human Tissue Authority) interview.  They have a legal duty to be satisfied that I am under no duress or coercion, and not being rewarded in any way for donating. As part of this, you have to prove your relationship to the recipient, which we did with full birth certificates (NB not the abbreviated one as you need parents' names on it) and lots of old wedding photos for ourselves and some of our siblings.  We have often had a photo taken at these events showing the seven brothers in order, with the new bride in the middle - never thought these would come in handy!  The only worry I had was that I don't look as young as I was, so I also took an old passport to prove that it was me in the pictures.

The HTA also want to be assured that the donor understands the risks of donation and the possible things that could go wrong, so a decent read of the four page HTA document is required, as well as listening carefully to the things that the surgeon said in our earlier interview. It all went well and the interviewer said that she was satisfied, so that's a done deal unless there was something fundamental that she forgot to ask.  I also had a few pre-op things done - some MRSA swabs, some more bloods (as always!) and a fasting abdominal ultrasound, which was done by a doctor and he pronounced that there were no issues seen.  NB I don't know why this was needed - did they think my insides might have changed since the last one in August last year?

The next step is the final cross-match check which will be done six days before the op - another visit to London - and then everything else will be done the day before the op.

Starting to feel a bit nervous or apprehensive - the same sort of feeling as the imminent arrival of a long-awaited exam day.  As I've said before, this is all the sort of thing that I had expected as a natural consequence of making the donation decision last year, so it's no surprise really, just a realization that the summit seen from afar is actually getting quite near!

Less Than Six Weeks Now

It's funny how things change.  Last year, I was expecting to have the operation quite quickly and time seemed to pass quite slowly as eventually it dawned on me that actually it wasn't going to be that quick.  Then we had the false start back in March when we agreed a date in May only to be over-ruled by the team meeting.  Now it seems an age ago (i.e. early July) that we agreed the operation date (Oct 16th) but suddenly I realise that it is just six weeks away. That's the sort of thought that makes your stomach flip a bit as you appreciate that it really is going to happen.  Soon. Voluntarily.

Back in June I made an analogy of this experience to a parachute jump which I did 20 years ago (see this entry).  As time passes I am even more convinced that it is a very good analogy for kidney donation.  I volunteered for that jump, and it never crossed my mind, once that decision was made, to opt out.  The following through with actions was a natural consequence of the decision; I didn't keep asking myself "why am I doing this?", I just got on and focussed on what needed to be done, the next task.   

I think that is exactly how I feel now.  Right down to the idea of going into a hospital as a very well person and coming out as a not so well person who needs time and attention to recover. The decision is made; my brother needs some help which I can provide.  I just focussed on the next test, the next visit, and kept on doing it.  At every test I was surprised that I kept on passing them! How would I feel later in life if either I had not volunteered, or else I had got cold feet and opted out after a few tests?

I am not really surprised to be a form of answer to prayer.  It was said a long time ago that you shouldn't pray for something unless you were prepared to be part of the answer!  I really feel that I was called to volunteer, that this task "had my name on it", and that this is one of the things that my life is all about.

Anyway, it's the HTA interview in less than three weeks, plus another abdominal ultrasound for good measure.  I really found the last one a bit odd - two young women (one was a trainee) staring intently at my abdomen and the picture that appeared on the screen.  My age is more than the two of them together. That really makes me feel old - they probably think of me as almost geriatric!

Cholesterol Postscript

There was one rather nice thing recently - I was told the results of my blood test early in July.  The result was VERY good - my cholesterol has gone down from 6.8 in March, to 4.7 which is on the right side of 5!  Now, considering that I have given up just a few things and taken only a little bit more care with what I cook and eat, I think that's a remarkable result.  I have to thank my other half for that, really, as she is the one who knows how much saturated fat there is in everything.

I've not taken any more of that Atorvastatin stuff (which caused me sleeplessness) and so I feel quite justified in that decision.

Meanwhile, the HTA interview is now fixed for September.  That was more difficult than it sounds, as the interviewer only gave the hospital one date and time rather than a choice, which is normal.  Since I have to travel from the wilds of Oxfordshire to a London suburb, a 9.00am start was not really on and, in any case, I had asked for a time of 12.00 or later to allow for me to travel by train at the cheaper rate (and I'm paying!!). So the transplant nurse requested some alternatives for me and the reply was 11.00am on the same day!  So we went round the houses again, and at last had a choice of three dates and times.

I'm now expecting the letter with all the details of that; I think I have to demonstrate something about my close ties with my brother, like a family photo album.  Now given that I have lots of brothers and there are four who are closer to me in age than Tim (who is seven years younger than me), it is hardly surprising that there are relatively few photos that show us together. I just hope that the interviewer is more understanding at the job than in arranging appointments.  After all, if you were told to find the two related people in a crowd of a hundred, you would pick the two of us out without difficulty!

The Date is Set - Again

Positive progress at last.  Tim and I met the surgeon again a week ago, and confirmed that we were still fit and healthy.  Then yesterday the transplant nurse confirmed that a date has been set (again - see last time) for the operations, namely October 16th.  This is the date we agreed tentatively at our meeting, but this time (unlike last time - see here) they waited until the team meeting every Friday had confirmed the decision before telling us it was set.  We did have options to ask for a September date but this is out due to family events like a wedding.

Since Tim's eGFR is still just above 15%, what has changed?  I think basically they have accepted Tim's evidence of being less physically fit this year than the same time last year, and therefore on the basis of his reduced quality of life, they have accepted that the operation should go ahead.  I suppose that eGFR is not the only symptom but is used as a convenient measure which covers most cases, but not this one!

Now, I still need to have the HTA interview, and this will be booked for September.  I also need to have another ultrasound - I think they like to have this one really up to date and my previous one was in August last year, so will be 14 months old. Hopefully this will be fixed for the same date to save me too much travelling.  Then we're ready to roll!

More on Cholesterol

I mentioned my cholesterol blood test a while back (see this entry) and I realize that I never updated on what happened next: the surgery rang me and said that the GP wanted to see me about it! This was despite having been told by them that I was NORMAL and they had confirmed no further action was required. So I asked the obvious questions "Has he seen the test result? Is this really necessary?" which was all too much for them.  Clearly they are not accustomed to people asking questions, but after two such phone calls I gave in and made an appointment with the GP.

He got off to a bad start by saying "we've had this letter from a hospital in London which asks us..." at which I said "yes, I know, I myself gave that to the nurse when I had the blood test".  (In fact I virtually had to force it on her.)  Anyway, it turns out that my overall cholesterol level had fallen and was indeed now acceptable, but the low density cholesterol (the worst sort) was 3.5 and the letter said "If LDL > 3 ..."  So we had a long chat about this - he was pretty unhappy about being asked to do something by someone else - and I agreed to take the Atorvastatin stuff for three months and then do another fasting blood test to see if it did any good.

Well, I've only finished the first month of the prescription for Atorvastatin and I'm not taking any more until I've seen the GP again.  The leaflet says that one of the possible side effects is sleeplessness; I suffered several dreadful nights whilst taking it, so I've stopped and - hey! I've been sleeping pretty well!

Possible Progress

My brother reported to me recently that he had taken a few days off and visited the same place as last year at the same time.  So he did the same walks along cliffs and beaches as last year.  And he found that he was far less fit than last year and couldn't do these same activities as easily (or at all).  But according to the hospital, his kidney function is still as good now as it was last year.

Now the kidney disease is the only thing wrong with him, so what's going on here? Why is he feeling worse when they say his condition has not changed?  They haven't given him an answer, but there is now a suggestion from his consultant that as his quality of life is reducing, perhaps he should be given the choice of electing to have the transplant sooner rather than later.   His eGFR is still hovering at or above the level where they would recommend the transplant but it seems that, in his case, they will accept the evidence of the reduced "quality of life" and ignore the eGFR figure.  So, we could be back at the starting gate, looking at a possible operation in about October this year, by the sounds of it. I'm trying not to get worked up over this - they have changed their mind before so, until their team meeting agrees, I won't make any plans.

I once did a parachute jump.  After training, I actually found it quite easy to get in the aircraft and we taxied out; I was committed and accepted the imminent event calmly.  The decision had already been made and I wasn't reconsidering at that stage, just like now.  Then at 2,000ft I waited my turn, and then did all the right things when the jump master shouted at me.  I think that was the military part of me, responding to training and not looking down as I stood at the exit from the aircraft.  In the same way, when I had my colonoscopy (see this entry), I just accepted the treatment and didn't worry at all about what these professionals were going to do to me, or the possible outcomes.

In any case, I think my approach is to take it as a decision made and look only at the practical issues.  Perhaps I should think of it as though I was the one who was ill? In that case I accept that it has to happen somewhen; then my military training clicks in, I ignore the personal thoughts and just do what is needed.

Another Little Detail I had Forgotten!

I had forgotten to record that, when we met the surgeon at the hospital, she also asked for a fasting blood test to check my cholesterol level.  I arranged this at my local surgery and it was done quite quickly (and without bruising).  My blood pressure was taken at the same time and was 113/72 (or something like that) which is the lowest I have ever seen it.  I then left the surgery and popped into the adjacent coffee shop for a large latte and a lovely bit of cake, having had no breakfast.  I then entirely forgot about the test and it was only over the Easter weekend that I remembered that I had not had the results. 

Now, a previous GP explained the cholesterol graphs to me about nine years ago.  My understanding then was that it is almost impossible at my weight and age to be in the "Normal" part of the graphs.  Hence it was no real deal to be told that I was in the "Caution" sector at that time - I was just happy that I wasn't in "Danger"!

Consequently it was with some trepidation that I rang the surgery last Tuesday to ask for the result.  I was amazed to be told that the test was "Normal", and no further action is required.  Perhaps they really mean "Normal for your age and weight"?  It is not the first time I have had that said to me - see this blog about my ultrasound last July.  That's a bit more believable but it is still far better than what I was expecting.  So, I really am FIT.

Small Consolation

I had a surprise the other day: "my" consultant nephrologist telephoned me at home at 5.30pm!

The purpose of his call was to tell me that, contrary to previous advice, there is nothing that needs any further tests on me.  When the transplant nurse told me of the postponement, she had said that there were two things which the meeting had wanted investigated, but one of them was simply not true (presumably someone mis-read the CT scan or something).  The other one was to do with my gall bladder which the transplant nurse had said was the possibility of gallstones, but the neph said it was actually the possibility of an enlarged tube.  (Why do different people tell me different things?).  The neph told me that he had just looked at the scan with a radiologist; they had decided that there was actually nothing out of the ordinary and so no further test is required.

So, while I consider the probability of an extended wait for the operation, at least officially I am 100% fit, provided I ignore the muscular and joint issues with my back, neck and knees.  OK, so let's say that my systems are fine, it's my structure which might have a few bad signs for the future.

And backwards three places...

That didn't last long.  Today there was a team meeting where our case was discussed, and it was decided that the operation should be postponed until my brother has two consecutive eGFR tests of 15% or below.  Which could even be a year, they say.

At least I can get on with my house (see http://houseintheenchantedforest.blogspot.co.uk/)  but it really is quite irritating when you are getting yourself all psyched up for it.  And it's not as though Tim feels perfectly well, he's quite ill but he's just not bad enough!

Just to rub it in, 30 minutes after that phone call, the postman brought the admission letter for April 30th.

More Positive Progress

I've now got the Human Tissue Authority interview booked for next Tuesday.  I've not yet had the list of things to take but it includes a "long" birth certificate (which I can't find) and lots of photographs to prove that Tim and I have been part of the same large and loving family for years.

The "long" birth certificate is the one with your parents names on it, and I can only find the "short" one; this has been resolved by ordering a new one, which I shall pick up at the register office on my way to the interview.  This involved a couple of funny phone calls as the local authority registration office is only about 250 yards from the house where I was born (and where my parents still live); hence when they said "where were you born?", my reply produced a friendly response along the lines of "I walk past there on my way to work"!  At least it made the 7 day response become a bit quicker.  Then on their form they ask for the reason why you want a birth certificate, and I suspect that my reason was unique for them, judging by their reaction.

I've also had some more test results, and a copy of the surgeon's letter to my consultant which sets out her reasons for judging me suitable to be a donor - I think I'll frame it!

The test results include a PSA check - dunno what that means but it was a blood test about my slightly enlarged prostate.  This was the one from my ultrasound last year that was "probably normal for someone of your age"!!  Anyway, the transplant nurse has told me that it is fine, and the surgeon's letter gave me the result of my exercise ECG last week, which was also fine, apparently.  The important bit of that result is that there are "no ST changes" on the ECG; if you search for "ST depression" then you'll find what that means, and I think it's pretty important so that's VERY good.

So, essentially, apart from the result of my fasting lipid profile (i.e. blood test for cholesterol), I'm good to go.  This is good, as my brother has seen his own consultant this morning and she is very pleased with the operation date; had one not been set he might have been looking at starting preparation for dialysis.  I don't think he had actually realized how ill he is, and the setting of a date has been a bit of a shock to him.  So, the waiting really is over, and it's time to sort out the details of how to prepare for the operation itself.

The Date is Set

Tim and I saw the surgeon yesterday, and we have set a date!  May 1st!!! That's not long, is it?  End May/early June had been mentioned but, as we have a family celebration on June 8th, we had intended to defer it to June 12th.  Early May is fine as we'll have plenty of time to recover before the celebration, and now it won't be a spectre hanging over the event.

Going back to the start of yesterday, I left here really early to drive to London and miss the worst of the traffic on the M25.  My first appointment was a treadmill test in the ECG Dept at 9.00am. This was quite easy; the actual test takes only nine minutes, and it was only the last three minutes which were remotely trying.  For that part the thing is going at 3.4 miles per hour and it is tilted up at some angle, which puts a good stress on your shins.  To me this was actually the same feeling as doing a forced march on my RAF training many years ago which I think was about 4.5 mph (and don't forget the 30kg backpack and rifle).  The technician took regular blood pressure measurements, and I was pleased to see how low mine was - starting at 118/78 isn't bad, I think, and the highest it got to was (I think) 150/70.  The machine showed the systolic figure as a percentage of 159 which I was told was the highest allowable figure for a person of my height/weight/age.  Anyway, the technician wrote a few lines about the test, ending with "Good Effort", so I think I passed that.

Then at 12.00 the Renal Dept staff were surprised to see me when I arrived with Tim!?  It turned out that there had been some horrible accident which had blocked the A3 and they had expected that I (like some other distant patients) would be severely delayed by that.  While we were waiting there was lots of time to provide another urine sample which seems par for the course.

I was seen first and had a lively chat with the surgeon, Sarah.  She is a lovely person who inspires confidence and knows how to treat you as an individual.  Her questions to me were full of good explanations which allowed for the fact that I am fairly intelligent and have done some research on-line.  She ascertained early on that I'm a Chartered Engineer, and she has a husband and brother who are both engineers, and so she started using engineering terms.  She even described herself as "just a plumber"!!  She then produced a schematic of the relevant bit of "plumbing" and asked me whch kidney should be removed? I said that I think the standard answer is the left, other things being equal.  It turns out that other things aren't equal as my right kidney has lots more plumbing than my left, so she will definitely take the left as that makes it much easier (=safer) to both remove and install.  My right kidney has three arteries in and two out, but my left one has just one of each, so is perfect.  The other issue is the size and the right is just a bit bigger, and they prefer to leave the donor with the larger one if possible, so that was all the ticks in the same box. It was good to actually see the pictures from last year's CT scan (see this entry last August).   These showed clearly the difference in the arteries of the two kidneys - isn't the technology incredible?

Sarah was most impressed with the quality of our tissue type match - I think her word was "amazing".  She wants me to do a fasting blood test at my GP (again? I think someone lost the original from last year) but otherwise I'm good to go.  I was with her for almost an hour, and then it was Tim's turn for about 45 minutes, then we were in together and the main question was the date, followed by a few practical details.  There still remains the HTA interview and "our case" will get discussed by her team at some weekly meeting soon, and I think that there will be another visit for me there somewhen in April (possibly the week before admission?).  One of the practical details is that we are admitted on the morning of Tuesday 30th April and they seem to spend that day doing lots of checks (and doubtless taking more blood and urine samples!) 

Of course, before we left, there some more blood samples to be provided - they never seem to have enough of those, but at least I haven't got the same bruised arm as last time...

Progress At Last

Yesterday I finally had my first appointments at the hospital where my brother has been treated.  This is near to my parents' house and so we had plans to go and see them for lunch and dinner before returning home; it all made for a long day.

Being nice, I will only say that at this hospital, the general approach to patients is not quite as good as my local transplant centre, but perhaps I've just been lucky.  We arrived early, not wanting to risk the London traffic, and found our way around this slightly out off date building to the Renal Dept.  Eventually I met one of the transplant nurses (although the one looking after me was on holiday) and asked for the obligatory blood and urine samples; I was much amused by the phlebotomist's tourniquet having Dracula and vampires on it!  Then I was off  for an echocardiogram at the ECG Dept which is where I shall also have the treadmill test in a couple of weeks (the day when I see the surgeon); I was told yesterday that actually I couldn't have that test on that day - it was a mistake.  Happily whilst I was being seen, my wife spoke with them and I now have a 9.00am appointment for that same day (as I really wouldn't want to travel all that way for such a frankly trivial test).

The actual echocardiogram was fine, it seems, but I found the posture adopted was a bit difficult.  I was asked to lie on my left side with the display behind me (are they still afraid of the patient seeing his own data on the screen?).  The table was canted up as well so I was bent sideways at my waist, and then I was asked to bring my left arm up over my head!  Try doing this at home, add in a sometimes bad back and neck, and see if you could hold this for 25 minutes!  A large pillow to support my head would have been a good start, and if they wanted my left arm out of the way, I would have preferred to put it on the end of the table.  I actually used it to support my head, but then my elbow started complaining... This procedure did not finish until at least 20 minutes after my consultant appointment, so there was another long walk back to Renal and another wait, before seeing the consultant almost an hour late.

On the phone, the transplant nurse had said that the consultant was "my" consultant, and his job was to protect my interests.  I had not quite appreciated this aspect before; he is required to be (and is) totally independent of the team looking after my brother, to ensure that there is no conflict of interest.  He went through a lot of my history using his PC but, to my surprise, there was no data on it from the tests last year.  It seems that the CD with all that information is still with the absent transplant nurse - I know it was sent because I posted it myself last August, and she had confirmed that she has it.

[Slight drift off topic - I used to work in IT, and I have always thought that the story of the NHS IT system under the last Labour Govt was scandalous.  They wasted well over £10 billion on this project and kept on giving more cash to the useless people (principally Accenture, formerly Andersen Consulting) who kept on getting it wrong.  Eventually it was gently terminated by the new government in 2011. The first aim of such a national project should not be to try to design and implement one new system for the whole country, but to make it possible to link the existing systems together so that data can be passed to another hospital, as in this case.  To do this you have to define a common standard for the data and define the export file that you need to send; then the only expensive bit of new software is a process to import the datafile into each individual system.  This they clearly failed to achieve if they cannot import data from a CD from a different hospital trust; can I please have £1m for showing them the way?]

Back to the topic: after lots of warnings about the risks, my consultant declared himself happy that I was fit to donate, and then thanked me for doing so.  He followed that up by saying that of course I can still change my mind right up to the actual removal of my kidney - there has to be a point of no return somewhere, after all.

We left this old hospital with its difficult signage, dated and tired decoration, multiple levels and silly (and expensive) car park, and spoke of the hospitals back home.  In several different departments of three separate hospitals in the same group near where we live, I have had such consistently wonderful service from helpful and lovely people in the last year.  What is it that makes hospitals so different?  When you go somewhere else, the different culture is most noticeable, and it really affects the patient's experience.  The actual operation will be done at another larger and more well known hospital so we're not too worried about this; however I couldn't help wondering whether Gordon Brown would have been better off investing all that cash in better facilities rather than believing those *** IT consultants!

Outstanding Tests and Progress

I think this is all moving now.  The Transplant Co-ordinator at Tim's hospital got on to me on Friday, just a day after his specialist appointment.  They've had a look (a last!) at the results sent to them by my local transplant centre and need me to do a couple more tests and also see the consultant next Friday - that's a bit quick after six months of doing nothing.  Then, if that's all OK, I'm booked to see the surgeon 13 days later.  The HTA interview which I had been puzzled about (by its absence) will then happen after that.

The deal is that they are suggesting end May/early June for the operation, and we might also be on the cancellation list so it could be before then.  As far as I can tell, from Tim's point of view this can't come soon enough.

One of the tests they want is an ECG treadmill test; presumably this is to make sure that I am fit enough (I think they are worried about my age) - I'd like to think that it wasn't done last year because they could see that I look damn fit, even though I say it myself.  Still, it'll be good to actually meet these people at last!

The Waiting is Over

Well, it looks as though the waiting is over.  Tim's latest results were not good and he saw the consultant today; as a result they have scheduled a transplant for end May/early June (three months ahead is normal). 

Now it depends on me, it seems.  Nothing is fixed for certain until they are certain about me, and there are a number of things that are still required or need to be repeated.  Remember that I had all my testing last year done at my nearest transplant centre, and that I have had no more than the odd telephone contact with my brother's hospital - I've never been there.  Hence, I am expecting a call at any time to talk about what else needs to be done, such as repeat tests and various interviews such as with the HTA. 

Tim is being very good, saying that he wouldn't be offended if I changed my mind, but frankly that's not something that I have really considered.  I saw the inside of three hospitals last year (as a patient or for donor tests), and that has not put me off; as I said at the beginning, I felt that my name as on this when I first heard about his illness, and that conviction is still with me.  After all, he's my brother!