Crashing halt.

My whole journey to become a living kidney donor careered to a crashing and crushing halt yesterday afternoon with devastating effect.  I attended the x-ray department on the 5th floor of the tower block at The Royal Sussex County Hospital for the latest and one of the last  outstanding tests on a potential donors schedule - a renal ultrasound.   I filled my bladder with at least two pints of water prior to turning up, as requested, I arrived at the department early for my afternoon appointment. Thankfully being so early paid dividends and I was shown into a lovely fresh scanning suit a whole twenty minutes ahead of my scheduled time.  Cool lighting, clean surroundings and warm atmosphere ensured I relaxed almost instantly and after I’d laid down gel was applied to first right side before the ultrasound wand pressed gently over my skin.  It didn’t feel painful or uncomfortable in the slightest, in fact it was just a little ticklish when the gel was spread about a bit.  When instructed I rolled over and the other kidney received it’s ultrasound investigation. This time I was able to see the screen which instantly made me marvel at what an amazing image bouncing around sound waves can have and also how blooming clever the people are that can see exactly what those images appearing actually are.  It was odd at first, all I noticed was little more than splodges, shadows and grey splashes to my untrained eyes. However with a little prodding and expert positioning up popped an image of my kidney, looking all rather err  kidney shaped, clear and rather well defined. Blood flow was demonstrated by blue and red splashes of colour on the monitor screen and I was informed it all looked good,  both kidneys were just as they should be. A quick scan of my bladder was then completed, just to make sure it was working I guess and that too was up on the screen, then it flashed bright red and blue, like a Christmas tree on speed when I giggled somewhat, proving that A) I’m ticklish and B) It was working fine.    All in all the ultrasound examination lasted about ten or so minutes and was a rather pleasant experience with no pain or even discomfort and being able to see the insides, the kidneys in my case, was rather fun.  I felt light and airy as I walked out of the department are around the buildings to the Kidney centre,  I suppose that’s much like the feeling pregnant ladies feel after seeing their unborn baby on the monitor after a scan.

It didn’t take long to wander around the buildings and before you could sing happy birthday three times I was in the waiting area of the kidney centre waiting on the coordinating sister.  Then this whole deck of cards came crashing down around me as we reviewed my results,  already the report from the ultrasound was in with the sister,  it advised my kidneys are of normal size, shape, appearance and location,  so all was well there. All my urine tests have been clear and in good shape, not showing another other than normal. My chest x-rays showed that my lungs are clear and my old ticker is normal and according to my EKG working perfectly.  My blood work showed clear of hepatitis B, hepatitis C, HIV, human Tcell lymphotropic virus,  whilst both CMV and Epstein-Barr virus were detected,  themselves no barrier to donate, everything was plodding along so nicely and as expected. Tissue typing had been completed and looked perfectly good, although how anyone can say just by looking at all those numbers and dashes is beyond my limited understanding. Nuclear medicine results were now reviewed,  the  renogram MAG3 story told the  renography is normal with a differential of left kidney 51% and right kidney 49%, so working very evenly, either one a good candidate to be whipped out for someone else to take charge of.  However,  the bad news came with the results of the nuclear medicine glomerular filtration rate Cr51 EDTA, it was measured as 71ml/min which was scaled down to my body area to read 64ml/min/1.73 m2. Half time is 159 minutes which corresponds to a GFR per unit extra cellular fluid volume of 61 ml/min/13litres - in short the conclusion of which is I have moderately impaired filtration function,  the lower end of normal, which is considered too low for transplant because my kidney function may reduce during later in life and I may need both kidneys,  so a doctor I’ve never met, heard of or even been named to me has decided that I’m not organ donor material because when I’m in my 70’s my kidney function might reduce, emphasis on the might there I think.  So over six months of thinking, considering and soul searching combined with three months worth of research, two months worth of appointments and countless hours worth of tests were all to no avail and for want of a better expression,  worthless.  I felt my heart sink to the floor and a wave of abject sadness engulf me like the tide covers the beach. All the positivity I previously enjoyed about the whole process and what I was actually doing itself flooded out of me and an emotional empty husk of a man remained.
I asked and there is no chance of them repeating the GFR test,  they simply ’don’t do that’ for they wouldn’t know which result to work with and heaven forbid them doing a third GFR test if the results were vastly different.   

Whilst I have no medical knowledge of such things,  I feel the non-repeat of the GFR test disappointing to say the very least,  I know it’s expensive,  I know it takes four hours odd,  but what cost do you put on the life of the person that may have eventually received that kidney from me as a consequence of the test ?  

I’m also left wondering if the result of the GFR test was somehow compromised by having both the MAG3 Renogram radioactive material injected into my arm at the same time,  through the same entry point as the Cr51 EDTA.  Having two different kinds of radioactive isotopes careering around in my bloodstream at the same time obviously put pressure on my kidneys to filter a whole lot more and I’m also sure that is why I’ve had a dull ache on both side of my lower back since the test.  Or if it had anything to do with my rather full bladder and having nothing to eat for a full twelve hours prior to the test.  

Last night I cried for a person I don’t know, the person that would no longer be getting my kidney,  who may not live to see another spring or summer because of what a doctor says  might happen to me in my seventies.  If it were up to me I’d go ahead with the donation regardless,  I’m not a great believer in what might happen,  only what will happen,  I mean, according to the Mayans the end of the world should have happened today -  which,  whilst it feels like it has for me at the moment,  I look around and see that isn’t so.  So whilst I’d readily agree to the donation now, I’m prevented from doing so because of and I quote - ’It’s not medically ethical to do so’ based on that one test result.   I feel so empty,  so low and so very sorry, especially for that unknown person that could have had one of my kidneys.   

Why a stranger

Since I started this journey to become a living kidney donor I've been asked more than a few times why I've chosen the altruistic route in donating to a stranger.  It is a good question and something I've thought a lot about,  I suppose, honestly, the first and perhaps the biggest reason why I'm donating to a stranger that I’ll almost certainly never meet is that I don’t personally know anyone suffering with any form of kidney problems that would require a transplant!

Secondly,  how would I choose who to donate to?  Sure there are a few various websites where those with kidney failure write about themselves and   appeal for an organ. I've read those appeals and readily admit to being in floods of tears before getting to the end of the numerous appeals. Many paint such heart achingly sad pictures that  I wish I had multiple kidneys in order to give them all one I could give them all one. Then of course, wouldn't other things come into play regarding the decision, like age or background, perhaps personality or potential. I know we all say were not judgemental but in that situation that’s exactly what I’d have to be, judgemental, judging people on what they say, what they do, on the lives they've had and yet to have. Of course,  if I could get over that,  then there is the medical aspect, I'm not a nephrologist -  that’s a kidney doctor,  nor do I have any medical qualifications or training so how could I possibly choose, I wouldn't have a clue as to who would be most deserving,  most in need,  who wouldn't live without a transplant. I don’t want to and nor am I able to make decision of who lives and who, well perhaps doesn't   Would you want to make that sort of decision?

Thirdly, with altruistic donation there is little danger of emotion getting in the way,  there is no added pressure of seeing a loved one so ill,  or so in need.  There would be no resentful feelings toward the recipient should they perhaps have one or two drinks more than I might consider appropriate or so on and so forth.  I fact, thinking about it,  I’ve got it easy,  those that donate to a family member or a personal friend have a whole host of other worries and concerns that I escape.

And lastly, why not a stranger? People do nice things for strangers every hour of every day in some way and this is no different. I can do something wonderful,  I can save a life by donating one of my kidneys, so does it really matter if that life is someone I know or someone I’ll never know? 

More soon.

Next test is an ultrasound of my kidneys next week.

Forth Appointment - Renogram and GFR - a radioactive Jay!

Such an early rise for me this morning,  far beyond my normal comfort zone,  I'm so not used to getting up this early.  Ok, so I’ll readily admit that for some of you seven am is not exactly early at all, but for me it’s practically the middle of the night! An early riser, I am not.  Actually I awoke at around six-thirty, I didn't really sleep all that well, I was worried,  not about the forthcoming tests you understand, but worried about sleeping through the bloody alarm!  I have a habit of doing that you see, sleeping through alarms, I have been known to sleep through three different alarms and miss an important wedding!

Thankfully this morning I awoke long before the alarm and after taking care of the normal morning ablutions, I couldn't really face a breakfast, not with drinking the litre of water I’d been asked to consume before the tests,  so I just cycled in toward the hospital.  My insides were all awash as my little legs peddled hard against the wind.  The six mile ride in was wonderful,  well as wonderful as an six my cycle ride can be in temperatures barely breaking above freezing point and the wind nipping at your nose and fingers like a angry jack russell dog with distemper!  

I arrived in good time at the department of nuclear medicine at the front of the sprawling amalgam of buildings that is known as The Royal Sussex County Hospital. The waiting area of this department is, I have to say, rather small, with a blue fleck effect floor and the lightest lemon walls, white doors and blue synthetic leather chairs, which were surprisingly comfortable. After a little while a lovely nurse by the name of Mae-Lynn came along to measure and weigh me, the results of which came as a nice surprise,  a little bonus if you will.  No, I’ve not grown up another inch, sadly, I’m still the five-foot-five shortie was I was before,  but I now weigh in at twelve-stone-nine and not the thirteen and a half or so that I did a few weeks ago.  I’m bloody pleased about that and couldn’t help but tell Mae-Lynn,  in fact my brimming smile told the world of my excess of joy,  although to be honest there was only one other person in the waiting area, so its hardly the world,  but you know what I mean!

A little while later, before you could count down from one hundred along came another nurse by the name of Mel,  asking me to empty my bladder.  Now considering the almost two litres of water I’d consumed and all before nine-thirty,  that wasn’t a problem. (Obviously I used the toilet and didn’t just empty my bladder right then and there on the waiting room floor!)   After that I was shown into the scanning room one, a rather big area with a number of scanning machines and other associated equipment occupying most of the space.  I sat down on the bed thingy attached to the machine,  which I believe they call a ‘couch’ and whilst the lovely jolly Mel explained the procedure and time scales of what was about to happen, the equally lovely Mae-Lynn was assessing the quality of veins in my arms.  Luckily for me, I was having both the NM MAG3 renogram and the NM Glomerular Filtration Rate Cr51 EDTA examinations at the same time.  So once Mae-Lynn had chosen an arm, the right one,  she injected me with the two different radioactive isotopes one after the other.   I felt little other than a tiny prickle as the needle went into my arm, no discomfort from the radioactive material going into my veins and careering all through my blood stream. 

Mel showed typical good humour when I joked if I’d glow in the dark after these tests, whilst it may have sounded funny in my head, I wonder how many times a day she hears the same one. At least half a dozen I’d guess,  but she smiled and joked along for a second or two,  but also informed me that there would be no glowing or other odd occurrences as a result of the injections. Other than having to avoid very close contact with expectant and new mothers nothing at all to worry about and after twenty-four or so hours I’d no longer be radioactive!

renogram

The first was the scan, the renogram part of it and I was told to lay still, very still and the machine would take pictures of my insides,  namely kidneys and bladder in twenty second blasts. The ‘couch’ slid back into the scanning machine and I still I had to remain, luckily my ipod for musical diversion was allowed, although horizontal dancing was not.  There was also a handily placed monitor that I could view by turning my head to a jaunty angle which displayed the images of my kidneys.  It was quite fascinating to watch the proliferation of liquid in my kidneys and then filling my bladder,  which looked surprisingly small to me considering the size of the kidney’s themselves. Mind you the whole picture on the screen,  to the uneducated eye looks rather like the face of a little mouse!  

It wasn't uncomfortable and before I knew it Mae-Lynn was asking me to get up and empty my bladder,  apparently half an hour had passed!  (I’m sure I didn't drop off,  but you know,  considering the early start for me it is entirely possible for me to succumb to a wee nap!)  Anyway I toddled off for a wee and then back for another minute scan,  which was done so easily.   My bladder was still a bit full,  so I had another wee and we did the minute long scan again.

Sitting back in the waiting room I felt rather oddly normal,  not a bit different,  not a bit radioactive or anything.  I did feel a little ache in my kidney’s or rather my lower back,  but you know I'm pretty sure that was just a psychosomatic phantom ache as I’d been thinking about them a whole load.  Perhaps they were a little shy,  after all, nobody usually sees them and now  at least three people had just been looking at them on a screen!  Obviously I jest there, I'm sure my kidney’s wouldn't have such feelings,  renal shyness indeed!

The GFR test takes about four hours, after they inject the radioactive material they then take half a test tubes worth of blood from the arm at regular intervals. At the end of this, after the bloods been analysed, they will have a four point graph showing how much of the radioactive stuff is still lazily having a jaunt around my body in the red stuff.  Apparently this shows how well the kidneys are working at kicking ’bad’ or impurities out of the bloodstream.  Kidney’s you see,  work surprisingly hard and do rather a lot of work, to my mind they are the unsung hero’s of the human body. They don’t get the same credit as perhaps the heart or the lungs but,  without our kidney’s we simply wouldn't survive. So,  may I suggest you not only take care of your lovely hard-working kidneys,  but you also say thank you to them on a regular basis!  

Whilst I was waiting for the big hand to hurry on round the clock face I listened to my pod and actually wrote out this post in my little notebook which occupied my time rather perfectly. Although, I'm a little puzzled now,  as I have the word ’Spinach’  underlined twice written in the margin and I've not a clue why! I’m not even a spinach fan!  Anyway, off I toddled to another room and they fitted a little cannula to my other arm,  again no pain or discomfort, just a little poke with a sharp needle thingy, although technically it’s not a needle, but a hollow plastic tube these days. This was taped to my arm as they’d be using it to take blood for the next four or so hours.  Whilst I saw the nurse taking my blood out, even though I watched it filling the vial I didn't feel it going,  although having said that,  it really isn't much they take at all.  I'm not sure of the actual ML’s but it’s roughly about half a test-tubes worth.  The only thing I would say is that blood seems surprisingly dark when it is a test-tube and not a jot like it looks all splashed around all over the place,  like it is in the movies or on the telly.

I went for a wander around Kemp Town after the first load of blood was taken, just to break up the day, get a little fresh air and stretch my legs.  Whilst I was walking around it set me thinking, whilst I may have thought this whole GFR test thing was rather long at four hours, at least I could get up and go for a walk around.  The average dialysis session runs for roughly the same amount of time and you definitely cant get up and hand a wander about town during one of those. Plus of course, those with kidney failure don’t jus have one session of dialysis,  they have three or four a week!   So four hours out of my life is nothing compared to the time they have to give up in order to simply go on living!  

The second, third and fourth times they took blood all passed by without any discomfort or incident, thanks mainly to the care of the staff and the cannula in my left arm and at the end of the time I felt wonderfully happy.  Another couple of tests done and another couple of steps taken along this journey,  getting a lot closer to the end goal now, yippee!   Now all I can do is hope that the results of the renogram and the GFR are all good and show everything the consultants want to see and nothing they don’t!  

Next examination for me is an ultrasound of the urinary tract and kidneys which will be in a couple of weeks time.  This is another test in which I’ll have to drink a few pints of liquid before hand and I’ll not be allowed to have a wee for at least an hour before the scan.   I’m rather looking forward to this one too,  ultrasounds are all rather easy to cope with,  nothing other to do than just lie there whilst the ultrasonographer or whatever the technical name is presses the wandy thing over my lower areas.  Apparently I’ll probably be scanned with both full and empty bladder and all this will show the shape, size and position of the kidneys.  I’m told it will take little more than fifteen minutes, so not long at all, then after that the only thing scheduled is an appointment with the consultant a whole month later in January.    

Its the waiting time....

It has been a beautiful clear Sunday down here in Brighton, the sky a majestic blue colour unblemished by even a single cloud and whilst it was cold it wasn't bitterly so. Perfect for an energetic stroll along the promenade and around the port at Shoreham. The waves of the English Channel broke over the beach with a gentle and comforting sploushh and all my cares and woes melted away.  I must admit that I have been feeling a touch anxious over the last few days,  we’re getting closer to the date for my GFR and Renogram examinations and whist I'm not worried at all about the actual tests themselves,  I am about the results, I just hope they are ok,  that my kidneys are in a good enough shape for one of them to be snipped out for someone else to have.  I suppose that sort of feeling is normal,  many donors probably go through exactly the same thought process, you know, we've read up about the tests themselves,  so we have a clear understanding of what they entail and all that, in fact so much so that the only unknown quantity is the results!  

It is a little odd this sort of worry or concern, you see for once in my selfish life I'm not worried or concerned about the results for myself,  but for someone else, some unknown stranger.  To be honest I'm not at all bothered about my glomerular filtration rate or indeed what size and shape my little kidneys are in,  it matters not a jot to me on a personal level honestly, but it does to that unknown stranger,  that person who will eventually get one of them,  well without wishing to be melodramatic about it,  but to them the results of my tests could be the difference between life and death!  Now that I've written that down I know it might sound a little silly, you know to be so worried about someone you've never met or ever likely to meet, but I guess that’s all part of this whole donation journey.  Although I have to say that I suppose this is one of those unusual benefits of altruistic donation,  the fact I don’t know who my kidney is going to go to,  for if I did,  such worries and concerns would multiply by at least a hundred and that must be hell to cope with.  Especially as all the tests seem to take a long time in coming around, on average one every fortnight,  therefore such a wait must be agonising if you’re watching a loved one slowly get sicker day by day.  Hence, I suppose upon reflection, I should be really grateful that I don’t have that sort of added anguish or concern,  I should just be content it’s all ticking along and so far all the tests have been good and each one is one step further along this journey,  I just wish it would go a little blooming faster!