The steady decline...

March 2005

It was a Friday, and a Friday we had off school - something about a teacher training day. I had been looking forward to this day off school all week and welcomed the lie-in it would bring. My mum told me that I would have a dental appointment that morning but I would have to walk down myself due to the fact that she was working. I didn't really mind as it was only down into the village which was down hill all the way.

That week I could feel a chest infection coming on, but had actually had three months without any antibiotics, so didn't really mind. We had been to NY and I had been well enough to enjoy that so it was a small price to pay. I figured I would call the hospital up the following week.

And then came Friday.

I woke up at about 8.30, and figured I would get up at 10-ish to leave time for a shower. A short time later I got up and proceeded to get sick in the bathroom- something that wasn't incredibly unusual as I did it about once a week anyway, but my whole face felt puffy. I was coughing and coughing. I felt cold and shivery but then too hot when I got under the bed clothes of my mum and dad's bed. By 10.45 I wasn't up or dressed and simply dreading my 11 o'clock appointment. I was breathless just lying in the bed and felt all clogged up everywhere.

But I did get up and did get dressed and walked down to the dentist. I was in no mood for small conversation and wanted to be anywhere but there. I didn't know what I wanted, or where exactly I wanted to be; I was just sick. Looking back I probably had a temperature anyway.

I remember struggling back up the hill afterwards, eyes half shut. It felt as though I was running but at the same time, home didn't seem any closer. I spotted two girls from my year walking down the hill on the other side and I just kept my head down. I was just sick.

I don't remember when I ended up in the hospital but I remember parts of the stay. My temperature rose up to 39.7C and I ran two or three a day. I slept all day and night. Without oxygen, my sats (the amount of o2 in my fingers) fell down to 70%. I wasn't allowed to go to the bath by myself 'just in case'. One night I even had some minor 'arrest' type thing, where my o2 had fallen off and my sats dropped to 56%. I awoke up to two doctors and a very worried nurse looking at me. A student nurse then stayed with me while the nurses did their morning report. I wasn't eating, I wasn't even living- I was just lying in the bed existing. I was just sick.

I did get better however, and shortly afterwards was referred for my transplant assessment, where I was told I was too well. But after that, things had changed. I had had my first bad infection, and was well aware of what damage could be done. After that, I pretty much stopped eating altogether. Before hand I had picked at food, after that for the MAJORITY of the time, I didn't bother. I went on feeds 2-3 times a day. I was well again, but things had changed.

When I look back now, I credit this time to what I see as my steady decline. I hoped I would pick up, and at times I certainly did- after all I wasn't even bad enough for a transplant then, but I was sick. And not getting a whole lot better.