Kidney Transplant: Zero Hour

I love making Direct to Video titles up. The more colons, the merrier.

So one of the things I wanted to do with this ‘blog was to try and maintain some positivity.

This may go some way to explaining the lack of posts of late.

It’s entirely fair to say that the first half of this year hasn’t really been what you’d call brilliant. Not even in the same ballpark, even. My health has been slowly deteriorating for some time, and over the past few months the effects have gone from potential to actual. It’s quite hard to spot from the outside – I look absolutely normal, or as normal as I get – and aside from the odd tremor in my hands and a tendency to do things very slowly, it doesn’t really show. Nevertheless, it’s there. It’s the oddest sensation. Someone commented to me that I seemed very phlegmatic about it all, that they’d be terrified if it was happening to them. That’s my secret, Captain. I’m always panicking.

So. I go into hospital tomorrow, and on Tuesday my brother Alistair will be donating a kidney to me. It’s a hell of a thing to do. It’s the biggest thing, and I know he’s as nervous as I am. If you want to say howdy and good luck, he’s @lostcosmonauts on Twitter.

I’ll see you all on the flip side.

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.

Health Update, or “multiple doctor confusion extravaganza”

I had a follow up appointment with the hospital, which for some odd reason was scheduled with the diabetes clinic, in spite of the fact that I’m not diabetic.  The doctor who saw me was slightly confused on that point.

Still, he did his best, which included being further confused by my notes.  He showed me the discharge sheet from my stay in hospital where the doctor had noted that my CT scan was normal.  Then, he flicked to my CT scan notes, where they described noting a “sclerotic, bony lesion” at the top of one sinus.

Which meaning of sclerotic is that, I asked the doctor.  It seemed pertinent, as not only are the sinuses near the eyes (hence my concern vis it being sclera-related) but also “sclerotic, bony” struck me as something of a tautology.

It’s probably just benign, he replied.  Don’t worry about it.

He then went out to confer with a colleague (getting a bit tired of that happening) and came back to reassure me that it’s fine, nothing to worry about, and also he’ll refer me to neurology for a follow-up appointment.

The saga continues!

Bullet in the brainpan – squish!

While we were getting some bulk shopping over at Costco yesterday, I started to feel a little bit under the weather.  I have headaches a lot, so I didn’t think a great deal of it.

By the time we got home, I could think of little else.  I was lying on my bed, sheeted in a cold sweat, and alternating between yelling and sobbing from the pain.

Lisa took me in to the hospital, and I spent the night there.  My CT scan came up clear, which was a relief, but I’m now on medication to lower my blood pressure (which was through the roof when I went in, and moderately brushing the rafters when they discharged me).  According to my ECG, I have an enlarged heart (‘how enlarged?’ I asked.  ‘10%?  20%? Is my heart where my lung should be and has my lung become a vestigial lump?’ – for future reference, doctors have zero sense of humour when you are flippant in this manner) and a couple of other ancillary symptoms that point to hypertension as the primary cause of my attack.

Not the most fun way to spend your Saturday, and I don’t imagine Lisa had a great time either.  I think once she comes home I’m going to be told in no uncertain terms that I no longer have permission to scare her like that.