The Flolan Diaries... Looming

Hey Blogland. 

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Well I seem to be having breathing issues at the moment, I have no idea why. There is nothing that should prompt the lack of ability to breathe. It’s starting to annoy me a basic human thing should be easy not so frigging hard the only time I don’t wear my oxygen at the moment is when I go to work on a Saturday, when I go out (which isn’t very often any more) and when I’m in the shower/bath. That’s it! 

I went to the GP's on Friday and they are going to get hold of Air Liquide (the guys who deal with my oxygen) to get me on portable oxygen because at the moment I've only got a concentrator which turns the air into oxygen and I've got a few big oxygen tanks which aren't exactly portable, they are only for if I'm spending a night somewhere. I did get a really nice GP this time though, because usually I get really awful ones who are horrid but I think this guy was new, he read up on me before I went in and even asked me a few questions and genuinely seemed interested rather than bored wanting to get me out of the room. I think I will ask for him if I ever have to go back to the GP :). 

Today I rang Hammersmith to see if they had heard back from the imaging department and they said that I had to be up there on the 14th by 4pm. I'm a little annoyed that they didn't ring me sooner because it's not like my parents can just get days off at the drop of a hat even with a terminally ill daughter, don't get me wrong it is easier, but my parents hate to mess the people that they work for around and they don't think it's fair on them to have to find replacements for them at such short notice. But the good thing about it being a Sunday I suppose is that traffic into London won't be so bad. 

I must admit the second he said that I would need to be there on the 14th my heart jumped out of my chest. Throughout my teenage years I always said that I would never have a procedure awake. I think this was because as a kid I didn't really understand the risks of anaesthesia on people with PH and I assumed that if they could do it on me as a child they could continue to do it on me as an adult. But unfortunately with age comes the truth from doctors, the only reason they put children under for procedures is because firstly they don't want to scare them and they know children won't stay still long enough for the procedure but by doing so they are adding extra risks on top what can sometimes be risky procedures. Children however heal faster than adults, I personally think it's because they don't really have a clue whats going on when they get put to sleep the magic milk, as I used to call it, would go in and then you'd wake up maybe a little worse for wear but that was it. So now as an adult I get it they will only put me to sleep if it's absolutely necessary, which is good I suppose because I don't react very well to anaesthesia, I get very sick, but there's still the part of me thats extremely frightened to have things going in me while I'm awake :-/

But I must be positive and I WILL be because this will hopefully improve my quality of life and maybe I'll be able to spend the day without my oxygen and only use it at night and be able to walk up the road. So I'm trying to think of all the things that will hopefully come out of a quite a scary experience. Plus who knows I might get my transplant before then...Right? LOL. 

Also I found that lovely quote above ^^^^ and figured it was quite apt for what I was talking about I'm very afraid of what I'm going to be having done but I want/need it more than I'm afraid of it and I think this could be applied lots more in life :D

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