The Kielder Marathon

This weekend Alistair and I both completed the inaugural Kielder Marathon.  It’s been a surprisingly short six months since we both found out that we had got places and that we were going to be doing our first marathon ever, and while I can’t say that I enjoyed the actual running of the marathon, it’s been a pretty fun journey.

One of the first things I should say is thanks to everyone who supported us while we were training up for the event.  We raised £1343.80 for kidney research, which was far in excess of what we anticipated.  So thanks all, from Nigel, Alistair, and myself.

I will warn you now, there are photos of paleness after the link.

Continue reading “The Kielder Marathon”

Om nom nom nom nom

So, today I went to see a dietician to try and sort out my potassium levels.  The thinking is that if we can control that through my diet, then they can give me as many anti-hypertensives as are needed to get my blood pressdure to settle down.

Low potassium diets are weird, though.  It’s completely counter-intuitive to everything you think would make a “good” diet.

Fruit and veg are all high potassium foods, for one thing.  Some are higher than others, but nevertheless I should generally stick to 4 small portions of fruit and veg a day, and avoid very high potassium ones like bananas outright.

I should always par-boil vegetables, too, and cut them really small to increase the surface area so that all the potassium leaches out into the water (which, I’m told, I should throw away – no more piping hot vegetable scum for me!).  “I hope you like mash,” says the dietician.

Milk, which I used to drink in hilariously vast quantities also, is out.  I get an allowance of half a pint a day, which is just insane considering I could happily drink a pint of the stuff right now.

No wholewheat or bran cereals.  All the husks and things – high potassium.

No chocolate.

NO CHOCOLATE.  It was my only vice, too.  I asked if I could trade up to something harder, like cocaine or fudge, but apparently the former is illegal and the latter is also bad for me.

I can, however, drink as much fizzy pop as I like.  All that advice about how it’s bad for you, rots your teeth, makes you stupid etc etc?  Out the window.  Aside from water and tea it’s the only bloody thing I can drink now.

That, and spirits.

Vodka, anyone?

Also starring Nicholas Cage as…Fu Manchu.

Today I got to see a consultant about the biopsy I had back in January.  Funnily enough, it was a different consultant which meant I had to go through everything with her again to get to the point where she would tell me what the hell they actually discovered.

So, when I was in my teens I developed HSP.  I was all kinds of blotchy, which was fun in that not fun at all way, and had to go for ultrasound and blood tests.  The doctor declared me okay when the blotches went away, and that if I had any issues in years to come, be sure to mention I had the condition.

So, almost fifteen years down the line, here’s the kicker.  It never really went away.  Instead, my immune response has been producing lots of an antibody (IgA) that has repeatedly inflamed and scarred my kidneys, reducing them to approx. 40% of their normal function.

Kidneys, as we all know, don’t self-repair and don’t grow back, so 40% is my new 100% at the moment.  All I can do now is take even more medication to try and control my blood pressure so that the inflammation and scarring occur at a reduced rate.

Due to my age and the level of degeneration thus far, I’m in the “poor” prognosis group, which means I will see dialysis in my lifetime and may require a new kidney (although because it’s an immune system disorder, I have a 35% chance of recurrence in any new kidney, and an 11% chance of outright rejection within a 5-year period).

To add to all this, the consultant tells me I should be sure to “look after myself”, which I thought was a bit fucking rich.  I mean, I’ve just been told that I have a systemic disorder that cannot be stopped or reversed that will, if the progression is linear, reduce my kidneys to a pair of vestigial, stony lumps by the time I’m forty-five?  Look after myself?  I’ve been doing nothing but so far and look what it’s got me.  Christ alive, I know I’ve heard some pretty arbitrary advice in my time but that really takes the biscuit.

Gah, writing that has made me all grumpy again.

Hispotal! Haspitol! I mean, uh, place with the sick people.

OK, so a little while ago I had to go into hospital for a kidney biopsy.  I’m not going to give a blow-by-blow account of the operation itself, which I would list as highly unnerving, nor am I going to detail the six hours I had to lie on my back, not raising my arms, watching daytime t.v.  Lisa has already had to sit through that, and the glassy stare my rant precipitated was a fairly solid indicator that it sucked as potential ‘blog material.

What I am going to say is that anticipation of the event was a mixed bag.  On the one hand, I wasn’t really looking forward to the experience of having a large needle pushed into one of my internal organs, no matter how fine the gauge.  On the other, I was rather looking forward to the offer of “something to calm me”.

I never really got into the casual drugs thing in my formative years, as I was so tightly wound that just the prospect of using an illicit compound paralysed me with fear as I considered all the terrible things that could happen.

So, as an adult, the very reasonable promise that I’d be given something to send me off into another plane of perception was quite tempting.  You have a slight risk of bleeding internally, was the message, and if you do happen to do so, we’ll need to stick a long wire with a bristly tip up a blood vessel in your groin to try and stop it, but it’s okay – whatever happens you’ll be higher than a treeful of monkeys on nitrous oxide.

Sadly, I was cheated on the promising front.  The doctor decided that I was sufficiently calm while discussing both the procedure and the sensations that would be part of it that I didn’t need anything other than the local anaesthetic applied to my biopsy site.  As a result, I didn’t even get the offer of “something” to calm me.  Just a brief warning that, should I move or breathe sharply, it would increased the chance of “suddenly piercing the large artery” and off we went.

By the way, when they stab you a couple of times after applying local, I now understand it’s to check sensation, so gritting your teeth and steadfastly not moving is very very bad because what happens then is they stick the biopsy needle in and you find yourself inadvertantly alerting the doctor, nurses and the corridor outside of your not-quite-anaesthetised state by going “FUCK” very loudly, after which a nurse comes into the room and bollocks both you and the doctor for scaring the next patient who happens to be on a trolley outside.

So that was me in hospital.  No results back as yet, or at least no one has communicated results, which is an entirely different thing.  I’d imagine if it was something terrible they’d get in touch with me sharpish, but maybe I’ll have to phone this week just in case.