A "fan" site created by People With CF. Highly recommended.
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.
What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.
Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists. Other blogs
Breath of Life
Another CF blog, rather more complete than mine!
> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)
I seem to have lost my links to other CF blogs. If you want yours added, give me an email.
Sun, Feb 20 2005
IVs and more
Last weekend got worse. I was better on Saturday but spent Sunday coughing the contents
of my lungs out three times over. We did some dusting which solved some of the problem
but ultimately it was this very flu-like virus causing me problems. It is not just
me. My mother never takes time off work but took off a week due to this virus, and
my Dad who never considers himself ill has been bedridden for 3 days. Nasty.
With this in mind I saw the doctor - the good one - on Tuesday. My lung function
was down to 2.45/5.05. Quite bad in fact. However she put that and the coughing
all down to the flu, which was unusual I have found for CF doctors. However she
warned that my immune system was down and I needed IVs as a precaution. Really,
after the experiences I had gone through with the virus I could not disagree. It
was disappointing though since I only had my last set 3 months ago, however this
was a special instance.
I started IVs on Wednesday, and have slowly been recovering my energy. I have missed
all days of work except Monday, but sleeping at extra times in the morning and evening
may give me some time back at work tomorrow. Meanwhile, with a bit of help with
transport from the players I should be running my Orpheus game this afternoon.
As always I question the need for IVs. My sputum is mostly clear already and it
is not turning thin like I would expect if I really need them. Yet the fact that
thick sputum persists is, I tend to think, a sign that the flu has not truly gone
yet, so not having to think about the pseudomonas is a good thing.
I saw the acupuncturist on Thursday who prescribed more no.9, the light spleen tonic.
However a few days of that has had limited effect, so I will also try no.11 again
to clear my lungs and open them out. I have to hope that with the limited use of
the IVs, Chinese medicine (and exercise) can restore my lung function.
Finally, I talked to this sensible doctor about salt. She turned it around: because
the salt goes to all the wrong places in a manner seemingly not fully understood,
CF patients end up with all their cells perpetually dehydrated. Quite a sobering
thought, but a good reference point for understanding and treatment.
Fri, Feb 11 2005
Recovering from a bug
This is my second day off work, but it seems comparatively (!) unrelated to CF.
My parents both have the same bug, so I am confident that large amounts of the problems
were caused by this bug. Unfortunately it triggered off my lungs - repeatedly, and
all Wednesday night. I spent yesterday continuing (but improving) the pattern -
30-50 minutes of sleep followed by a cough or five followed by up to an hour of
restless wakefulness. It felt like I did not know if I was asleep or awake.
The good thing is that after the rowing machine on Wednesday I was actually producing
something yesterday which soothed my throat partially, and of course that clears
out part of my lungs. Everything is still very thin, albeit slightly yellow. Unfortunately
the lack of sleep and the continuous coughing has left me somewhat battered but
I should be better in a day or two.
Wed, Feb 09 2005
After the rugby
Ahem. Sorry 'bout that. Yes I went to the rugby on Saturday and what a match it
was. First time I think I have been to a match where Wales actually won. More relevant
is that I survived: the hardest task was not the match, since between long johns
and extra jumpers I was pretty warm, but the moving of heavy furniture (ready for
it to be taken from my late grandmother's house). However I was somewhat shattered
on Monday. The continuous late nights do not help (my fault there).
So despite lung function being bad (I think) I seem to be doing very well and I
have a gym induction today. I have been taking no.11 again, so much that I was trying
to cough up nothing today - unless the depths of my lungs are full and I cannot
feel it there is nothing to bring up.
Addendum: I returned from my gym induction - did 6 minutes on the rowing machine
- and I am knackered. However, I suspect it is as much to do with the late nights
and endless dry coughing today (last nights herbs seem to be trying to move something
that is not there).
Sat, Feb 05 2005
Late night review
I am in the peculiar situation, for me, of coughing quite a lot up, or at least
continuously, and having somewhat poor lung function - my FEV1 on the homekit is
showing 275 rather than the 300+ it should be - while both gaining fitness and having
quite a lot of energy. Certainly being able to do more than an afternoon's work
while having late nights (it is 1am now!) is a positive sign.
Other wierdness is the regular need to sleep with a towel (folded up it puts pressure
in the right places to clear my lungs) and the amount of blood I coughing up. Nothing
to get worried about medically, but more than usual. My half-theory is that I am
clearing bits from the bottom of my lungs that have not been cleared in a long time:
this explains the colour of some of the sputum (most of it is clear or pale yellow,
but some is thick and green despite everything else); and if it has been there a
while it is more likely to have damaged/weakened the lungs or else to require more
effort to shift it.
I swam 10 lengths yesterday without any real problems (apart from the blood) and
have arranged a gym induction (the CF forums have already provided a recommended
trainer!). I am not quite running on full energy yet, but the one night I went to
bed early this week, I proved that I can do a lot in a day. Tomorrow I am off to
rugby in Wales - my grandmother bought these tickets before she died - which means
getting up in less than 6 hours time. I predict a dopey Sunday, but no real ongoing
problems - very good for me.