Showing posts with label blood tests. Show all posts
Showing posts with label blood tests. Show all posts

Friday 8 February 2019

Kidneys and Gout

In the last couple of years I have suffered from gout. The very first time it was so excruciating that I failed when I tried to walk from my house to the GP surgery, only 500 yards away!

Since then there have been recurrences which were not so bad, but I felt that they were getting more frequent so I asked my nephrologist about gout when I had my annual check up just before Christmas. This seemed like a reasonable thing to ask, considering that gout is caused by uric acid in the blood, and urate level is one of the many things which I have been tested for ever since I became potential living donor.

The common response when I tell someone that I have gout is "Isn't that to do with drinking too much port?" Instantly, you know that they need education!

Gout was once a problem which only affected the well-off so it was associated with what they ate and drank and, yes, one of those things was port. However, the point is that the average person at that time did not have a good enough diet to raise their urate level to the point at which they could be affected by gout. It was just the high consumption of lots of "good food and drink" which caused the gout in the well-off people (and principally the men, I suspect).

By the late 17th C, gout did start to affect the rest of the population and this has continued, generally thought to be due to the improvement in diet of the so-called working class. Research in the 19th C by the British physician Alfred Garrod identified uric acid as the causative agent into the causes of gout; the idea being that uric acid accumulates in the circulation and crystallizes into needle-sharp urate crystals. These crystals then lodge in the soft tissues and in the joints of the extremities –- classically, the big toe — and cause inflammation, swelling and an excruciating pain that was described memorably by the 18th century bon vivant Sydney Smith as "like walking on one’s eyeballs"! Because uric acid itself is a breakdown product of protein compounds known as purines – the building blocks of amino acids – and because purines are at their highest concentration in meat, it has been assumed for the past 130-odd years that the primary dietary means of elevating uric acid levels in the blood, and so causing first hyperuricemia and then gout, is an excess of meat consumption.

It is still generally thought that consuming foods which are high in purines will make you more likely to suffer from gout, and these high purine foods include lots of things which are otherwise good for you such as "oily fish" (omega oils) and "whole grain"! The list even includes Marmite and beer (both due to yeast). In a series of studies in the 1960s, clinical investigators first linked hyperuricemia to glucose intolerance and high triglycerides, and then later to high insulin levels and insulin resistance. The gout research effectively ended in the 1960s when the drug allopurinol was discovered which is effective at reducing the amount of urate produced. This cessation of research was understandable as gout is not fatal and so when a cure is found, there is no point in spending further research effort on it. However, the effect of ending research is that the commonly-accepted view is not challenged, althugh some scientists have said that "low-purine diets have a negligible effect on uric acid levels". I have been educating people about purines as the cause (as the bottle of port in my drinks cupboard has been there for about five years and is still not empty) but I have just found an alternative culprit.

That new culprit is that the rise in the incidence of gout in the UK might be linked to the massive increase in the sugar trade in the 18th - 19th C. It has been demonstrated that fructose consumption and uric acid levels are linked. The earlier researchers later admitted that they were unaware that sucrose is 50% fructose (and the other 50% is glucose, if you were wondering).

The hypothesis is that sugar (sucrose) and high fructose corn syrup (which is used in many foods) would constitute the worst of all carbohydrates when it comes to uric acid and gout. The fructose would increase uric acid production and decrease uric acid excretion, while the glucose, through its effect on insulin, would also decrease uric acid excretion. Thus, it would be reasonable to assume or at least to speculate that sugar is a likely cause of gout, and that the patterns of sugar consumption explain the appearance and distribution of the disease.

The trouble is that this is still only a unproven hypothesis. However, I offer it as a possibility for anyone who suffers from gout as it might just help them to cure the actual cause rather than simply address the problem with allopurinol for the rest of their lives.

Much of the above comes from the blog of Tim Ferriss (https://tim.blog/2009/10/05/gout/) where he presents it as the missing chapter from Good Calories, Bad Calories by Gary Taubes, a science journalist and author. I don't know if either of them are also medical doctors, but I know I'm not!




Wednesday 23 December 2015

Another Annual Check

Well, another year has gone by.  Actually, it's more than a year as the annual appointment was slipped by three weeks by the Churchill, and I attended there on Tuesday this week for my "MoT".  I was very impressed by the fact that the results were posted on PatientView at 6pm after being done at 1130am that same day!

The only slight worry I've had this year is that my creatinine went up at the six month point in June.  I think this was for two reasons: firstly, Tim and I reckon that creatinine varies through the day; you need to be well hydrated and, for a consistent comparison, have the sample taken at the same sort of time of day each time.  Annoyingly I forgot this when I made the appointment with my new GP's surgery in June and so it was not surprising that, at 8.50am, after just a bowl of cereal and a single cup of tea in the previous 10 hours, the reading was quite high, at 140. (They also did a cholesterol test even though I had not been fasting, so that was unsurprisingly very high.)

Secondly, the hospital's message about drinking more somehow seemed (to me) to be directed at the recipient more than the donor, and also it seemed to be "for a period of time" as opposed to "for ever"; I guess I was consuming only 1.5 to 2 litres per day in the form of tea and coffee.  So in late September I discussed fluid intake with the transplant nurse at the Churchill (as lovely and helpful as ever!) and we decided that I just need to drink more.  Since then, I have made a concerted effort to drink water, and also now I monitor how much I drink every day; I now have more like 1 to 1.5 litres as tea/coffee, and about the same in pure water, so my daily total is about 2.5 litres.  I discussed this with the consultant and he was happy with only 2 litres as a target, comprising half tea or coffee and half water or cordial.  He was clear on the need to avoid any drinks with salt (like what - Bovril or Tequila?), and even agreed that beer can count to the total, so long as you are staying within a limit of three units of alcohol per day on average - I reckon I average two units, although I admit to the occasional day in the summer when I had a couple of treble G&Ts or a couple of beers in the evening sunshine!

Having realized this in October and changed my habits for liquid intake, I have been hoping to see a decent improvement in things and I was pleased at a reading of 127 which is only 1 more than a year ago.  If I'm honest I would say that I was hoping for an even lower figure, having been so conscientious about my hydration; perhaps my focus on that is too late?

At least my worries about aches, pains and tiredness do now seem to be a function of age - I was worried that some of them were sounding a bit like Tim's symptoms before the transplant!

My blood pressure was good at 120/79 - the consultant expressed envy of that! Everything else was in the range apart from cholesterol.  He asked what I had done about this after last year's promise to see my GP about that; the answer was I had forgotten but my record showed that I had seen the GP in February - then I remembered that I had declined statins (as I reckon they make me sleep badly from a previous trial) and instead had made a few changes to my diet - less sugar, more skimmed milk, cutting fat off meat etc.  However, he thinks I should see the GP again as it's still a bit high.  Apart from that, hopefully that's it for another year.

http://www.heyfordhoofers.org.uk/

Thursday 19 December 2013

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"!

Tuesday 3 December 2013

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.



Tuesday 25 June 2013

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!

Friday 5 April 2013

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.


Thursday 21 March 2013

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.

Friday 15 March 2013

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...

Saturday 2 March 2013

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!

Tuesday 3 July 2012

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.

Thursday 3 May 2012

Now I'm properly in this process

At last, I have had the first interview plus had a load of blood samples taken.  It seemed to me that things were going a bit slowly so it was good to spend a couple of hours at my local hospital's transplant centre and get things started properly.  It's also quite a funny feeling going for a hospital appointment when you are not actually unwell at all; then you get treated very well, as though you are valuable and an important person - is this now a mark of the NHS for all patients or are donors given special treatment?  It was when I saw a stamp on my documents saying "Potential Live Donor" that I realised that perhaps a live donor is indeed valuable not just to the recipient but to the NHS, due to the fact that the donation will save the NHS thousands in the coming years. 

I had thought that the slow start was due to me living some way from London, and thus unable to easily attend the same hospital, but it seems that the recipient, my younger brother, has also only just started the actual transplant process.  The good news he has is that his kidney function (eGFR) has actually gone up from 17 to 19, so things are looking a little less critical for now.  He spent most of  last year stable in the mid 20s.  I understand that at 15 they want to be actually organising the transplant so it can get done before the need for dialysis which starts when it gets down to 10.  If the recipient avoids dialysis then apparently it reduces the possibility of rejection and improves the chances of everything staying healthy for longer, just as having a transplant from a living donor (LD) is more beneficial than a cadaveric donation (i.e. a dead person).

So, now the recipient and both potential donors have all had the blood samples taken for tissue typing and cross-matching.  This will get done in the next two weeks and then a decision needs to be made about the donor as they want to go ahead with just one at a time.  If just one of us is suitable then there's no real decision as we are both already willing and committed.  If we are both suitable, I think that it's down to us to decide who should be Number 1, and I have no idea how we will make that decision apart from prayer.  I think I've been told that it's unlikely for both donor brothers to not be suitable at this stage, but if that was the case then Tim is back to square one looking for other potential donors (of which there is already at least one of the right blood group, although not a blood relative). 

One question which was asked yesterday was how I felt about the idea.  This is very hard to put into words, but I have no worries and no concerns.  Why would I not offer?  Personally, it seems to me that if I can, I will; no question. I imagine that Nick, the other potential LD, has the same feelings as myself about it, which basically is that "of course I'll do it for my brother - I would hope he'd do it for me" etc.  By law payment is not allowed and of course one wouldn't charge a brother anyway, but I don't even think that any thanks would be needed to be said as I will know how he feels afterwards.   I know that I already feel very emotional about what this would mean for Tim - in fact, calling him to offer a kidney was a curiously hard phone call to make - I could hardly get the words out because of the emotional feeling.  To me it is almost a foregone conclusion - it's down to me and I have no hesitation in volunteering.  I do feel quite disinterested and detached from the issues which people mention; I think that having effectively made the decision already means that I just want to keep going down this road one step at a time, as far as I can, and I would not be happy in myself if I chickened out for any selfish reason.  Why would I not want my brother to be healthy?