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.
Fri, Sep 30 2005
Resolving the Knot
One description Chinese medicine gives lung disease is "knotty" - an entangled
mess, that seems to get tighter as you pull it and which is very hard to see where
to get started. I have had this very problem over the last few weeks. My concentration
and energy have been bad and I didn't manage to blog.
My sputum got greener, my diaphragm tighter, my diabetes worse and eventually my
digestion failed (I hardly ate yesterday). Nothing I took seemed to fix it - nos.
10 and 3 removed some symptoms temporarily but overdried my lungs considerably which
caused more problems over the next two days; no. 11 seemed right, but had little
effect; and the random other herbs again either made things worse or just didn't
As it happened I didn't have the right herbs, although the anti-heat herbs I had
from the Summer were probably the most suited (but not strong enough). I saw the
acupuncturist today who even in one session drained a lot of heat from my liver.
I have managed to eat, my sputum is lighter and thinner and with some luck by blood
sugars will start returning to normal. I now have a new unnumbered anti-heat tincture,
which also contains something that should heal the liver after anaesthetic. (It
is unnumbered because of the anaesthetic bit, which I won't need again for a while.)
The diagnosis, by the way, is that heat was made in my liver, which spread to my
lungs, causing phlegm heat - but no.10 and even no.3 treat damp heat largely, so
that is why they dried me out. This in turn made more heat in the liver. This is
a good example of "looking like an infection, but not".
While it has been a nightmare worrying about my condition, I am very pleased to
have it on the mend before surgery. I go in tomorrow (Saturday) to start IVs, will
have the operation Monday or Tuesday and from experience I will be out two days
after that. They wanted to start IVs on Thursday, merely because they now take levels
one day later. They didn't think that if I need a portacath that a venflon in my
veins would not last 4 days. Thank goodness for stubbornness.
Sat, Sep 17 2005
Tired - but why?
I am getting tired easily at the moment. I went down the gym last night and that
cleared my chest enormously. But for the last two nights I have started closing
my eyes at 10pm, much earlier than normal.
For sure there is stuff in my lungs, although I am fairly convinced that is mostly
harmless - either that or it is developing into an infection. My hunch is that I
have spent too much emotional energy on things like thinking about my port operation
and the Rage tourney I am running. The latter has certainly kept me up late, since
many of the other players are in the US or other countries around the world.
The fact is, I am not worried because even if it is a slowly brewing infection,
exercise will keep it steady and then I am having antibiotics with the operation
Fri, Sep 09 2005
The lack of entries is due to lack of concentration. While I have been worried about
my port canula, it seems my lungs have crept from being dry to having phlegm heat.
I blame the long run of hot weather personally. I did not realise until I saw the
acupuncturist on Tuesday, and then used 9 & 11 for stubborn phlegm for stubborn
phlegm. Last night I finally got smart and took number 3, woke up about 5 getting
rid of some nice green stuff and even managed to free my bowels (I can eat again).
The upshot of this? I can finally concentrate again (at least for the moment). It
means the several nights of 10 1/2 hours sleep were really necessary.
I also have decided that the growth left of my eyes really is getting bigger, and
even painful - probably a cyst. With some luck, I can persuade the surgeons to remove
it at the same time as the port canula since I would hate to go under anaesthetic
twice, knowing what it does to me.
Also we finally heard this week that my operation will be on the 3rd October, or
at least that week. Presumably they will slot it in when they can.