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
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.