Thursday, 10 July 2014

Paired Pooling update and a little extra


So, we were at the hospital for 4pm yesterday. Checked in and sat in our usual seats. No...really. Our usual seats. Every time we visit this hospital, we've always, always sat in the same seats, no matter who's in the waiting room: they're the rarer chairs of the room, against the wall, facing the rest of the room and opposite the TV. Tall backed and cushioned I find them the most comfortable. And they're always empty when we arrive. Yesterday, at one point, there was a change in the arrangements, which you could say almost reflected what Tom and I are going through. He sat next to me, then popped up to go do something. After he left, someone came and sat down in his chair. Tom came back and had to sit in the chair by my side. Someone else had joined us at 'our' chairs.

We were soon called up and went into the appointment room. I was then asked to wait outside for 10 minutes as she spoke to Tom (he later revealed what they'd discussed, but I think it's wise to leave that bit out. Nothing hugely private, just part of their process I'd rather not reveal). Then I was called back in. Lovely consultant, straight forward, but sympathetic. She seemed to gauge our responses as she highlighted particularly difficult bits of information. I say this because I've encountered doctors who just run in like bulls and can bull doze you down.
Conclusion: Tom's as fit as a horse. It's like everything that's wrong with me, he's the complete opposite side of the scale. Which is great! But terrifying.
Also randomly learnt that both kidneys can actually vary in size and the surgeons have to work out which is the best one to remove. I didn't know this. Or maybe I did and I'd forgotten.
She highlighted the usual risks of surgery, but then added that those risks equate to crossing the road.

So what's next? This is where the world started to spin a little for me. This consultant was working off facts and figured, not my own personal medical background which is what had me put onto this path in the first place, so there was some curiousity in her as to why we were taking this step so 'early' on in my state. As I'm pre-dialysis, I'm not urgent, and the medical team are often reluctant to operate on someone too early, in case there's a rejection/something goes wrong and a previously somewhat 'healthy' person then undergoes 'unnecessary' complications despite having been fine before the operation. Here's where I added that my specialist was behind my decision as the illness is starting to affect my every day life to which she added 'Ah, so there are physical symptoms'. Although I understand why I'd be undergoing this surgery, I still feel a little guilty that I might be taking a healthy organ from someone else who needs it....despite the fact that I know this wouldn't happen due to the system they use to choose. The wonders of the human brain.

She's now going to speak to my specialist. I'm going to see him early August and that's when (I'm guessing) everything's going to be set in motion. The next registration for paired pooling is in September, so everything will have progressed smoothly.
I've still got to wait for the last compatibility test to come through so it'll be interesting to see what happens if that's unlike the other tests and comes through, but for the mean time, my mind is on the paired pooling.
As I'm not an urgent case, I could wait up to 2 years to see if there's a match. We were informed, if nothing came to fruition, it was possible they'd consider the plasma exchange (remember the Thames clean up project I mentioned in another post? That). However, there's reluctance in doing this because it would mean putting me under 2 major treatments, that and the transplant which risks putting the patient under some strain.
There's only so much a patient can take. My specialist has constantly highlighted that they want to do what's best for me but also ensure that I live a daily life as normally as possible.
Understandable. However, I think a worse strain comes from knowing you're ill, not having anything done about it and knowing there's things you want to do, but can't because you're unwell.

I currently feel like Mario from the computer games, standing before one of those interminable gaps which require timing and energy to get across. I can just about see what's ahead of me now (though there are still about 3 prongs to the path I'm currently on), but a number of chasms to leap over.
This is why I'm doing this early. I'd rather do the treatment now and get on with life than continue tired and fed up waiting for the time to pass before the inevitable 'ok let's have that operation now' moment.

Next step: meeting with the specialist / waiting on the compatibility results.


If you've got this far, well done. Now you'll get a true insight into my head.

What you're about to read isn't being influenced by the cold. I actually slept really well last night so I've some sense of clarity.

Currently being massively ear wormed by 'Infected Mushroom''s 'Killing Time'. Just read the lyrics and realised how morbid this song actually is, but being wormed for its slow melody and beat rather than the lyrics.

I'm not going to lie, the point of this blog is to be honest. Right now I'm going through a difficult time. But I don't want tears, I don't want sympathy....I'll probably bandy away any attempts at 'are you ok?' with a simple smile and carry on...if I need anything more, I'll ask for it.
Yes. The armour is back on. This time with a shield. Not firmly, just enough to help me get through the flames currently burning at me, trying to leave me scarred.
I've become cold. Even to myself. Because I know if I don' may break me. I just need to work passed the rough patch and I'll come out the other side unscathed.

Why am I reacting like this when the news was good?
Because it seems to be never ending. Even after entering the paired pooling, I have to wait because I'm 'not urgent'. After that I may have to under more treatment to allow me to have a transplant. Years and years pass. I feel can't do that which I want to do because health is holding me back. And even if I can on a physical basis, my head is on another level which prevents me from doing so.
I've got to keep jumping through hoop after hoop after hoop and some of them aren't easy to climb over. And I'm taking people with me and potentially hurting them which I don't want to do.

Remember: I don't want sympathy. Right now, I'm working it out in my own way. If I need help, I'll reach out. I'll get through to the other end. I always do.

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