Annual Check Again

Well, yet another year has gone by.   I attended the Churchill on Tuesday before Christmas for my annual "MoT".  I remain very impressed by the reception I get, as just one of many donors who must pass through their door. They always welcome me with a smile and even remember that the recipient was my brother (who they never met) when they ask after his health as well.

I have had one slight worry this year (see below); health-wise, it has been quite a boring year which, after all, is what one would hope for at any age but especially whe you are past 60! That reminds me of what the examiner said once when I had a pilot's licence and was doing a General Skills Test; we had done a couple of touch and goes and I called "Downwind - to roll" expecting to do another circuit; he immediately thumbed the button and called "correction - downwind to land" (i.e. a full stop landing). Then he smiled at me and said "I'm bored!" It's what you want to hear, isn't it?

My figures this year were much the same as before- notably creatinine 132 and cholesterol 6.0 - and everything else was in the right range. However, my blood pressure was even better than last year at 116/71 and the consultant was even more envious of that than he was last year!

In discussion with the consultant I found out that it is normal for creatinine to vary a lot and also that it is less if you have more muscle - this probably explains why Tim's figure is better than mine!

The one slight worry with my health was that, back in July, I suffered from gout - just the second toe of one foot and the middle toe of the other. At one time it was so painful that I was unable to walk more than 20 yards. It seems that gout is caused by something called purines. These are natural compounds found in many foods which, when metabolised, produce uric acid as their end product; gout is essentially a build-up of uric acid crystals in joints. My urate figure has been high since the first blood test in 2012 amd I thought nothing of it; now, studying the diet guide, I find that there are certain foods which are high in purines, which should be eaten in moderation if not avoided entirely. To my surprise one of these was something that I have eaten all my life, namely Marmite, because it contains yeast extract. The list also includes mackerel (and other oily fish) and stock cubes! So, I am now on a low (or lower) purine diet and we'll see what happens; the gout has not recurred anyway.

That's it for another year, unless something dramatic happens.

Annual Maintenance Check

I had my annual check at the Churchill Hospital yesterday.  They were all pleased to see me; I'm impressed that they remember me after just five or six visits in 2012 and a single one exactly a year ago.  It's quite surprising that they also thought that the year had gone very quickly (as did the family on the anniversary - see last entry below).  Everything was fine; my eGFR is still 53 (creatinine 126) which is exactly the same as the previous check in June, and also (as it happens) exactly the same as Tim - so my two kidneys have both expanded and are both doing the same amount of work in their separate locations.

I told the staff at the Churchill the story of my check in June at the GP, and they were equally horrified.  The transplant nurse agreed that an HCA should not be wearing a dark blue dress as it indicates a more senior status, and the phlebotomist was appalled at the HCA's comment after hitting my nerve.  For the full gory story see this entry below.

NB If you ever go to the Churchill, try to go by bus if you possibly can - the 700 goes from Water Eaton Park and Ride.  Yesterday there were people queuing at all the hospital car parks and I felt pretty smug!

So, it's a check at my new GP next June and another visit to the Churchill in 12 months.  I keep trying to stop doing this blog, so perhaps now this really will be it, unless something significant occurs.

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.

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...

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!

...With Many A Winding Turn...

I've just returned from another day at my (relatively) local transplant hospital, after the last tests as described in my last post.  These appointments were for a "CT Angiogram Renal/Abdominal", a Glomerular Filtration Rate (GFR) test and a Renal DMSA; as expected it was quite a long day, but I must compliment the hospital for making it a relatively stress-free experience, as all three appointments were conducted at the times specified and I was not kept waiting unnecessarily.  Sadly, the necessary bit of waiting involved two waits of 90 minutes and three waits of 60 minutes, but there was no getting around those.  The good side of this is that I have now finished reading "Pilgrim's Progress" (at last).

The abdominal CT ("Computerised Tomography", in case you wondered) scan in Radiology was first. You lie down and are moved feet-first into a large doughnut-like machine which is basically a rotating X-Ray with some clever software to build up a 3D picture of whatever part of you they are interested in.  Part of this 30 minute procedure is three timed injections of a surprisingly large quantity of an iodine solution; the radiographer fitted a cannula into my left arm to save me looking like a pin cushion after the whole day; I was surprised that radiographers could do this, and she was cautious as she got someone in to check it. I spent some time trying to calculate the quantity of iodine based on the size of the transparent container and eventually came up with 125ml ("almost an armful!").   I assume that the iodine goes to/through my kidneys and is picked up by the X-rays thus highlighting the interesting features like the number and position of arteries. You are warned that this iodine can have three effects: a hot flush, a metallic taste in your throat, or the feeling of sitting on a warm car seat (although I don't have such a device in my car so could only guess); this last one has also been described as a feeling that you are wetting the bed!  I had only a hot flush on my palms and a slightly warm feeling in my nether regions. 

The other two appointments were done in the adjacent "Nuclear Medicine Department".  The GFR test starts with an injection and then the four subsequent blood tests (using the same cannula) will give an accurate figure for how well my kidneys are working - I think this is for future reference, as the eGFR has already told them that they work OK.  For the Renal DMSA, you are injected with a small amount of radioactive fluid and after the 90 minute wait they do a scan which picks up the radioactivity and shows the distribution of arteries etc around your kidneys.  (I think this confirms the CT scan.)  Because of this radioactivity, you are shown to a different waiting area (with toilets marked "radioactive hazard"!) when you come back for the scan - this is to protect the staff like the receptionists who otherwise would suffer a particularly large unwanted dose over a long period from many patients like me hanging around near them.  In doing the scan you lie down and they move a large scanner down to your body; I wondered if it had some sort of safety stop on the maximum travel as otherwise it could be a new way for someone to try and kill James Bond!  Or perhaps by this time I was starting to fantasize.  NB For this scan of my abdomen, I had to remove my shoes (why?) and was moved under the scanner to a position where my feet stuck out the other end in a draught! Just a small point...

I mentioned the Renal DMSA in my last post.  Since then I have found out (from Wikipedia) that DMSA stands for dimercaptosuccinic acid, which makes me no wiser.  It has the chemical the formula HO₂CCH(SH)CH(SH)CO₂H if you're into that sort of thing.  Slightly worryingly, the Wikipedia articles on DMSA and dimercaptosuccinic acid do not mention its use for assessing kidney function, while the article on Renal Function does not mention DMSA at all.  More questions for the list!  [NB I also mentioned Di Franks' excellent website last time.  I have also found that in fact she has covered the same topic of eGFR and Renal DMSA in some useful detail - see this link.]

In one of my long waits, I visited the Transplant Co-Ordinator to ask a couple of questions.  Since this is my last visit to this hospital, I also wanted to thank her in particular for making my testing so painless (both literally and metaphorically).  They will send my results to London and my further participation (if any!) in this process will all be there, so I won't see her again but I will keep her informed.  As far as I am concerned, the Churchill Hospital in Oxford have been excellent throughout this process of tests, and I think they have all been wonderful to me - nurses, radiographers, phlebotomists and receptionists have all been happy, helpful, efficient, professional and just right in their approach to me. Well done, I say.

Finally, on being picked up by my wife, I kissed her after greeting her with the ultimate chat-up line: "Hiya.  I'm Radioactive Man!"

Major Testing At Last

Well, I've just been at my local transplant centre for a large programme of testing.  I had expected this would take all day and am somewhat surprised to have only spent 2.5 hours in the hospital this morning! So here I am back at home eating my packed lunch, having only read five pages of "Pilgrim's Progress" this morning.  [I was advised ALWAYS to take plenty of reading material for such a wide-ranging set of appointments.]

The following tests were done: an ultrasound of my abdomen, a chest X-Ray (i.e. heart and lungs), a collection of blood samples, a urine sample and an electro-cardiogram (ECG).  There was also my first interview with a nephrologist ("neph"), who also did various checks again such as height, weight, blood pressure and a fair bit of trying to tickle me with his stethoscope.

The day started well at radiology, apart from the liquid.  One is instructed to consume TWO pints of anything non-fizzy (I guessed that ruled out my favourite ale even though it isn't really fizzy), just one hour before the appointment.  I was early and the wait was getting risky, and then to my surprise I was called for my chest X-ray.  How good that someone is switched on enough to know that she can take me and do a one minute test, thus getting me out of the way before her day gets busier.  At 8.10am the waiting room had only the person before me who went in at 8.20; I was seen promptly at 8.40am for the ultrasound by two young and attractive radiologists (one was a trainee) - I realized afterwards that I was probably older than their combined ages!!  Part of the test requires a full bladder and then you can (at last) relieve yourself and they do the test again.  It's noticeable that part of the design of a hospital requires the Ultrasound room to be situated immediately adjacent to some toilets.  Then I had to go back to the loo and do it again...  When they finished one said that I have an enlarged prostate and added "nothing to worry about - that's normal as you get older!".  When I came out after 30 minutes, the waiting room had about ten people in it; I felt slightly guilty at keeping them waiting because I had spent 10 minutes in the loo!

Then it was over to the Transplant Centre.  They seemed to have a new system and new staff at reception, but I found that it helps if you can tell them what you need, as the odds are that will speed things up. As I have remarked before, you seem to get treated very well as a potential living donor (PLD).  I actually felt quite guilty (again) at taking a seat in a crowded waiting room and then being called only one minute later by the Transplant Nurse for a general check on what we were doing today.

Then after a whole five minutes waiting, I had a lovely chat with the neph.  One thing that he is checking is whether I am fully informed about this decision (and of sound mind) so it seemed right to show that I had done some research about the risks and so on.  At least nowadays doctors accept that patients may very well have done some on-line research for themselves; information is power and once they used to resent any such input from the patient.  He also went through my medical history and I was reassured that there was nothing in it which would appear to impact this process.  I did volunteer the view that I think my medical problems in the future will be related to joints and ligaments etc which are more structural than anything related to systems, and therefore unrelated to donating a kidney.

Then after a brief stay in the waiting area, I was called for about five blood samples to be taken. The most important of these will be the one which allows assessment of my kidney function, either as eGFR or a creatinine measure.  After a quick urine sample (still easy after the two pints) and an even briefer stay in the waiting area it was time for an ECG - this confused reception as they were going to send me back to Radiology for it, but the Transplant Nurse was going to do it herself.  I know from many annual pilot medicals that I have a "right bundle branch block", but the ECG machine didn't do any auto analysis and neither nurse could interpret it to confirm that.  I once annoyed a radiologist in Guys by predicting the result; despite being young, she was of the old school where patients weren't allowed to access that sort of information about themselves!

Then that was it.  I was allowed to go and was on the bus back to the Park and Ride within three hours of ariving at the hospital.   Everything looks fine at the moment, so I have to await a review of the test results by the senior "neph", and then I will get an appointment for a CT scan.

Assuming that the scan is OK, my transplant centre will then pass me on to the team at my brother's hospital in London where the surgery will actually take place (if it all goes to plan). Of course, if there's a problem then it's the end of the line as far as my involvement is concerned.  At least there is already another perfect match donor available for Tim.  At his recent routine appointment they expressed surprise that there were TWO perfect tissue type matches from siblings as they would normally only hope for such a good match from an identical twin (and not neccessarily even then).   Mind you, a perfect match is far less significant than it used to be; I think it just reduces the cocktail of drugs that the recipient has to take and possibly also improves the probability of everything being fine; this seems a good thing, even if it's only a 1% improvement in the already high probability of a living donor's kidney still working well years later.