WBC : n/a
Neut : n/a
Hb : n/a
Plts : n/a

PCR : n/a

14th April2006

Happy Birthday?

April 14th

Over the last few weeks I've had some really crappy days. Until last week I was having almost with out fail, a fever every night. During the day the temperature was pretty normal, but would start its climb into the 38's in the late afternoon and evening. When you get temperature spikes in the 38's (celcius - the normal is 36.5) more blood is taken to run cultures to check for the presence of any infections in the blood. None of these cultures every showed signs of infection.

Not feeling well meant that I was spending my days sitting or lying around in my room, getting up to go to the loo, have a shower or to get something from across the room. As I began to feel better, I started to venture outside with some assistance for a very gentle stoll. By this point I'd lost so much muscle I was down to around 65.5 - 66 kg. I have never been this light unless you look back to when I was maybe 13 or 14 years old. I have to take it easy on the walks due to the weakness but also to my breathing difficulties. Just walking at a very gentle pace requires deep breathing. Any faster and I begin to feel out of breath and have to stop. After a few days I was managing to walk further than I'd been able to for quite a while; but it wasn't easy. It's such a relief and pleasure to be able to get outside and walk even if it is so challenging.

I had another three days of feeling pretty good. The doctors had already taken me off the IV antibiotics a couple of days earlier, and now wanted to take me off the IV antifungal and put me back on the voriconazole tablets as the new combination of drugs for the TB avium did not interact with the voriconazole in the same way as the anti-TB drugs did.

There is a slight interaction so the dosage needed to be increased slightly by 50%, but at least I could use a tablet rather than an IV drug. This is important as it looks like I'll be taking the voriconazole for some time, first for the treatment of the Aspergillus and then profilactively.

The next few days weren't so good. I wasn't able to walk the same distances I'd been walking for the last few days. In fact I was feeling pretty run down once again. Despite this I was allowed home for the afternoon to spend the day and night for my birthday and also to see how I could cope at home.

Quite frankly, it's become even harder than the last time I was home. I have found that I am totally dependant on my mother to do everything for me. Family came round and we had some cake and chatted. The sheer exertion of talking and sitting at the table meant that I had to breath pretty deeply as I was out of breath. This heavy breathing brings up clear mucus from my lungs so I have to cough it out. The whole coughing process requires a lot of effort and then I have to catch my breath back by breathing heavily. This brings up more mucus and hence repeats the cycle.

By the end of the night I had the worst coughing fit ever. Having spent one hour trying to get rid of some phlegm in my throat, I was completely exhausted, and gasping for breath. I think I got myself into a panic, as I wasn't able to catch my breath at all. Mum was freaking out and my brother took me back to hospital. As soon as I arrived I took a ventalin nebuliser. It's the same as an inhaler for asthmatics in terms of what you breath in, although instead of using the inhaler, you wear a mask, air is passed through a liquid solution and you inhale the small droplets of air. Next I started on some oxygen.

By this time I wasn't coughing, probably because I didn't have the energy to do so, but my pulse was raging at 140 beats per minute and my temperature was on its way up. By midnight, I had 39.1c temperature and my pulse was still around 125 bpm, and I was waiting for the on call doctor. My brother stayed with me until 2am when the doctor finally arrived, but my pulse was still around 120bpm. I was pretty worried and had all sorts of scenarios going through my head.

That night was probably the worst night of all. In the morning, when I eventually got up, the pulse and temperature were back to normal. I think was focusing too much on getting rid of the phlegm from the lungs, that I was over exerting myself and just got in to a panicked state. It's difficult not to want to cough hard to get something out that's blocking your throat, but you've got to be patient and let it come out normally. This is where I went wrong.