Monday, April 09, 2007


We went up to Gile's Quay today and had a lovely time with an assortment of relations whom I see too rarely. I went out and sailed around the pier with my younger cousins and Mum's cousin. All in all, a fabulous day!

Easter 2006

I had been waiting on the transplant list for about three months. The first two had been spent on pretty much full time IVs, with one infection rolling into the next. Despite this, I felt OK, I was still getting time at home and still only needing to sleep with oxygen. I was breathless and coughing up my lungs most days, but the body adapts to these things. I think because I have no memory of complaining at the time, I look back and think I was OK.

Easter 2006 was probably the turning point. I had helped my phsyiotherapist with educating students and she had given me a beautiful Easter egg to say thanks. It was a magnificent egg, wrapped up in a big orange and cream bow, and although I knew I would only have to sniff it and I'd be full, I looked forward to taking it carefully apart.

I began to feel unwell the week of Easter, but what I was coughing out of my lungs was a good colour (no real indication of infection) so I thought I might have just been a bit tired. The day before Easter, I stayed in bed. I attempted to come down to the kitchen, but being off the oxygen was purely exhausting. I was concentrating on not getting out of breath just sitting in the chair. If you can imagine having run down the road and then having to speak to someone, you suppress your breathlessness to get the words out, well that's what it was like the whole time. My mum suggested I went back to bed and lay with the oxygen on for a while. I have only ever spent the day in bed (at home) on a handful of occasions, and this was one of them. I had no dinner and just watched TV. Once or twice I ventured as far as the bathroom but that became too tiring too. I ran temperatures and got sick. The whole time my Easter egg with the big orange and cream bow sat on my bookshelf begging to be opened. My brothers and sisters ate my other eggs while coming in to spend time with me.

What I couldn't understand though, was what was wrong. I had been feeling OK-ish that week, I had no indications of infection other then the tiredness and temperatures. Looking back, this was what they meant when they said 'you have severe CF, and it's unstable'. I was brought into hospital and ended up spending 10days on 4litres of oxygen, 24hours a day. 6 of those were spent in bed....

To be continued....