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.