My name is Matthew and I have polycystic kidney disease. It doesn't define me though. Being gay doesn't define me either. Nothing defines me in fact. I'm undefinable. I wish I could be defined.
I'm writing this blog with a view to that: defining myself. Perhaps in a series of posts I can achieve what others can achieve in a single line or phrase. There are a few things going on in my life right now that it would make sense to put down into a blog.
So first let's start with the kidneys. Bloody things. It's a slow decline but it's going to happen. In six to twelve months, they say, I'll require dialysis. That's the ball ache. I don't mind the transplant, but dialysis is so inconvenient. Two types: haemo or peritoneal. I've studied the leaflets. I don't want haemo. That requires plumbing work, not in me but in where I live. New pipe work to install the machine, ugly machine in my beautiful flat, as well as hours attached when I could be living. No way! So peritoneal if is, even though that also requires plumbing, into me. A pipe inserted into my stomach area to allow for transfer of fluids. It's a night time system mostly, meaning day time remains normal. Inconvenient, certainly. Bloody kidneys.
The other inconvenience with it all is being on "the list". I'm expecting to be put on the list next month. It should take two to five years of waiting for somebody to die and for their kidney to be compatible with my blood and tissue type. That's two to five years of being near to the hospital just in case the call comes. That's very inconvenient too.
But life is about compromises. I'll give up some freedom in order to get that kidney. And in any case somebody will have to die for that to happen, which is also very inconvenient for that person. Seems odd to think that a living and breathing person could be walking about with my name on their kidney and a date on their demise not so far away. Such is the great recycle of life.
What's so frustrating to me is that for the most nothing is obvious with my condition. I have all my arms and legs. I'm not covered in a huge rash. I look "normal". And as such people forget. My own mother forgets. My friends forget. And I'm not going to keep mentioning it. There are far more important things in my life to discuss: travel plans, Brexit, Donald Trump's latest tweet.
There's the "living donor" thing too. Anyone can donate. It just freaks me out a bit, more so than receiving a deceased kidney. I'd rather not know the person. I find that easier to get my head around. Perhaps that's just me. I don't want to have that debt of gratitude. And what if it failed? What if they donated a kidney and my body rejected it. What a waste that would be. It's a bit of a head fuck for me right now. So my natural response is to cut it out of the picture and go with cadaverous. What a choice.
I'm pretty selfish on this. I get it. I'm depleting the national supply of deceased kidneys by my internalising. I know. It's not easy though. I could ask my brother or others, but something is stopping me. My family has never really been a close one. I'm not speaking to most of them because of Brexit. I'm a "Remoaner". More of that later.
I've put a bit of thought into whether or not to set up this blog. I'm a private person per se and it's quite hard for me to open up. I don't want this to be a "kidney blog". There's more to me than that, although that does appear to be the dominant issue facing me right now. That and how much I need to save up for retirement, will Brexit happen and when will Trump be impeached. Then there's the issue of my family. Notwithstanding I should be encircling them to give me a kidney I'm not really close to any of them. There's a bit of history, there, to explain, not least related to the recent death of my (ex) stepfather. I don't have the energy right now to explain how despicable he was to my family. Nor do I really want to talk about my lack of relationship with my natural father. My mother, I used to be close to, until Brexit. Our split over that, I believe, unearthed a number of issues I've nurtured over bad decisions I think she made as a parent. She's moderately elderly now, but I still have thirty years of memories that I'd much rather suppress. She's not a bad person. Weak perhaps, but not bad. But weakness invites bad, like an evil smoke flowing down the chimney of a family home, invading and damaging.
So onwards we go and let's see where it takes me!
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