My kidney...your life.

It's my kidney, but its your life - that's the tag line to my experience of trying to become a living kidney donor. It is true to say that living donors save lives, I wanted to be part of such a worthwhile activity. Sadly, giving up a kidney while I'm still breathing isn't going to be an option for me, but I carry a donor card, I've registered online and so, when I depart this ball of water, gas and rock, its open season on my body and its inner bits and bobs. Come and take them, I wont need them, but someone else may very well be in need of them, I hope they get them.  

Just to clarify the situation, I had another GFR test, which I had to have done privately and pay for myself, as the NHS wouldn't pay for another one for me, one was enough for them. The second test showed that, whilst my kidneys work, they are, well lets just say, a tad slow. Indeed my GFR rate in the second test was slightly lower than the previous one, which wasn't what I had hoped and proved that living donation wasn't an option. According to the NHS Choices site my GFR rate would indicate I'm on the boarder between stage 2 and stage 3a of CKD - chronic kidney disease, so perhaps its just as well no one else is going to get one of 'em while I'm still kicking.  

You might think that all this would have put me off donating organs, but nope, it hasn't, in fact it has made me see just how important it is that we all become organ donors, because you never know when you might need something. So if you are thinking about going dopwn the living kidney donation route, I urge you to do so. It is easy to do and as I've proved all the tests are painless, pleasant and pretty easy to deal with. So why not do it? 

  

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.    

Dates for ultrasound, renogram and GFR!

Why is it I wonder, why hospital receptionist don’t seem to be a particular happy bunch of people, rarely in my recent experience are they jolly folk who are happy and contented with their jobs. My most recent experience, this morning has amplified this notion, you see on Wednesday I received a couple of letters to contact the department of Nuclear Medicines to make appointments for a renogram and a GFR test, although why they didn’t just make the appointment and write to tell me, like all the other departments have done, is well, frankly beyond me.  Anyway, the weather was fairly clear and free from the horrendous downpours that have afflicted elsewhere, so I decided to cycle the six miles to the hospital, thinking that not only would I make my appointment in person at the department, but I’d also get some exercise at the same time.

Brighton's big wheel. Image from Sussex Police Helicopter

I arrived there, the department is in a rather shabby temporary building,  the waiting area was practically full and rather stuffy with no sign of a reception desk.  I spoke to one of the nurses,  who told me it was through this door,  which she knocked on and opened for me.   I waited for a few moments before an obviously put out lady asked if she could help me,  I entered the office,  saw two rather unsmiling ladies,  I informed the first lady that I had received a couple of letters and wanted to make those appointments if that was possible,   “Well,  it’s not!” was her blunt reply,  no apology at all, just that they don’t make appointments for people in person, just over the telephone. I studied the letters carefully and nowhere in them did it say making appointments in person was prohibited and jolly well unwelcome. I wish it blooming well had, for that would have saved me a twelve mile round-trip bicycle ride and a load of aggravation.  The reason the receptionist or appointment maker gave for this odd state of affairs is that she’s too busy making appointments to make appointments! Everything seemed to be too much effort to do it in person, although had I called, of course, I would have also taken up just the same amount, if not more time, so the logic of not having the time to make appointments seems slightly warped to say the least.  Oh and while I was in the office and during the time I spent in the department, not once did I hear her phone ring!  It was all rather annoying, but more than that it was upsetting, it was the first time in this whole journey to become a living kidney donor that I wondered if it was all worth it.  I mean, I didn't need this aggravation, it’s not like I have to have these tests for the benefit of my health, to make me better or anything, in fact having small amounts of radioactive material injected into my veins could be seen as being ever so slightly detrimental to my health. I know it’s only a small amount, but you know what I mean. I really felt like telling her this,  but of course I didn't  frustrated I may have been but I thanked her for her help. Anyway the appointments have now been made and another few steps on this journey have been made.

I'm having the renogram MAG examination first thing in the morning in a fortnights time and then right after that, on the same day I’ll be undergoing the four hour glomerular filtration rate tests.  I’ll have to wait almost another couple of weeks before I have a full ultrasound examination of the kidneys and urinary tract to provide pictures showing their size, shape and structure of my kidneys. Apparently I've got to drink at least two pints and have a full bladder before for the ultrasound, plus I’m not allowed to have a pee in the hour preceding it, gosh at the end of it I’ll be at bursting point! 

The First Step

Day 1 first meeting.

Tuesday’s birth was clear greeted with clear pale blue skies, a gentle watery sun offered little in the way of warmth but much in the form of brightness, it was the kind of morning that is beautiful, but best viewed from a warm lounge or kitchen with a big mug of tea! The English Channel seemed to shimmer as gentle waves rippled at the shore line all the way along this part of the coast.  I know all this because on Tuesday morning I had to rise early,  far earlier than what has become usual awakening hour. I wasn’t in the kitchen with a big mug of tea looking out on the morning,  nope, I was out in it.  I cycled along the seafront, the wind chilled my fingertips and whilst my face stung a little,  I was glad to be out in the fresh air rather than riding the bus.  I arrived in Kemp Town a whole half hour earlier than expected and decided to walk around the massive footprint that is the site of the Brighton and Sussex University Hospital.  Now, if you’ve never been there, which is most likely, let me just explain that the hospital is a multitude of different buildings, at least sixteen by rough count and all of varying architectural styles and fashions, built at various times over the last hundred and something years to house all the different departments, clinics, wards and facilities.  It is a true hotchpotch higgledy-piggledy haphazard amalgamation of buildings with connecting corridors and walkways that really should come with their own ordinance survey map.  However, luckily for me, the building in which I was to go was right at the back and easy to locate.  As I entered it struck me a curious mongrel of a building, it’s first six of it’s nine stories are devoted to parking for cars, the first five of which are underground,  it’s only the top two floors that are routinely inhabited by people.

I gave my name at reception to a very effeminately camp gentleman of middle age and took a seat in the reasonably sized and almost empty waiting room.  I chuckled to myself as I heard the receptionist stumble over my name when he called to announce my arrival to the medical professional I was here to see.  I cant say I was nervous, although to be honest I was a little, I was more wishing I’d had a morning coffee to wake me up and my tummy grumbled wishing I’d consumed some breakfast prior to my departure from home.  However, I’d been asked to abstain from food and drink for a full twelve hours prior to my appointment, therefore my stomach was grumbling in vain for a few more hours it would have to wait.

Caroline, the co-ordinating sister,  was friendly, warm and welcoming as she guided me from the waiting room to the consulting room via what seemed like a cupboard to check my weight, height and body mass index.  I am, it appears, officially a little over weight and could do with disposing of some of the extra baggage that has accumulated around my middle.  There was lots to discuss and go over during this first initial meeting or consultation if you will, much to be explained and many questions answered.  Whilst the Caroline was affable and professional, I must admit that was I was a little nervous and a tad apprehensive, well we were talking over serious things, really serious things that will have life long implications.  Once I’d had some blood taken for various test the sister gave me a coffee, which soothed both my nerves and as well as my tummy.

We went over what would happen next on this long road, a programme of key events if you will,  nothing too daunting, just the next rung on the ladder as it were. My apprehension dissolved as some things were explained,  how it all worked and what I could expect if all things went well.  Sure I’d done plenty of research,  checking various sites online and that sort of thing, but it was still good to have someone explain it in detail face to face,  all fears were allayed which only served to further enhance the knowledge I’d made the right decision.

The next thing to do was to give a mid-stream urine sample for analysis,  which is not taken knee deep in a baby river, but half way through the actual peeing.  Now,  I don’t know if you’ve ever had to get a wee sample,  but rather surprisingly it isn’t the easiest thing in the world to master.  I mean,  there you are in a little hospital toilet, todger in one hand, little plastic cup in the other, waiting till your urine is coming out at a good pace before you swipe the cup in and collect a good amount of the slightly yellow liquid, without splashing the walls with your own bodily waste or pissing all over your hands, trousers and floor.  Then of course you’ve got to put yourself away with one hand so you can put the lid on the sample pot,  which isn’t exactly easy either. Thankfully,  I just about mastered this without too much mess!

I said goodbye,  at least for now,  to the Caroline,  the sister co-ordinating this whole thing after depositing my urine sample in her little tray along with the eight vials of my blood heading for various testing and cross matching.  I was then off to the next set of tests of the day,  which happened to be in a completely different building on the other side of the hospital site.  I wandered down the hill around the front of the site and into what could arguably be the oldest part of the hospital with walls a metre thick and that traditional hospital look in the long corridors with a multitude of doors emanating off it.   Thanks to expert directions I found the reception of for the imaging and x-ray department with no trouble and after handing over the first of two appointment cards that Caroline had given me, I took a seat in a  small and very crowded waiting room that had a rather odd whiff about it.  I wanted to play the typical hospital waiting room game of guess the complaint, but I had no one to play against and besides the crutches kind of gave the game away.  After what seemed like a little over five minutes I was called and escorted to another room,  a rather big one with an odd coolness about it.  I’d arrived in an x-ray suite, big long bed,  giant x-ray machines,  control room behind it’s protective shield.  Released of my jacket and all things metal I was positioned in front of a machine, gently manoeuvred into place before another machine was pulled up close behind me. The radiologist dashed off behind the screen and after holding my breath for a wee while,  a nice x-ray of my chest was taken.

ECG (not mine!)

Cardiology was my next port of call in this morning of medical exploration which happened to be at the other end of the corridor in this amalgam of ancient buildings.  Ok,  that is a little unfair,  it’s not ancient really,   it only dates back to 1826!  Apart from being at the other end of the corridor the waiting area for the cardiology department was much nicer, less crowded and frankly smelt a good deal better.  Again, my wait wasn’t long,  incredibly short in fact,  which was pleasing before a lovely nurse came and got me, in fact I felt I was almost queue jumping as I seemed to be called before others that were already in the waiting room.  This bubbly nurse took me into a little room and asked me to take my top off, not because she had an uncontrollable desire to see my excess bulk or tweak my nipples for fun,  but because I was here for an electrocardiogram.  A painless procedure where little pads are placed on the chest area,  a couple in ticklish spots on the side and one the front of each ankle.  These are all connected with wires leading to a box and after a minute or two out prints a lovely picture of ones heart function and circulation and when I say picture I really mean a mass of squiggly up and down lines on a graph,  yet the nurse called it a picture so who am I to argue?    She did two,  just to make sure there were no wiggles or squiggles and then that was it,  shirt was back on and I was out of the door after two and a bit hours after I went in.





That was last Tuesday,  The results are now in and I’m going in this Thursday for a follow up and feedback session with Caroline, the sister, apparently there were no unexpected results,  which is a good thing,  at least it sounds it, but I’ll know for sure on Thursday.  Thankfully the appointment is at a more Jason friendly time of mid-day rather than first thing in the morning and I’ll be able to eat and drink before this appointment.