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.
Sat, Jul 23 2005
I am going to feel soooo silly
After quietly worrying about IVs all week, I had a brief respite on Thursday when
I saw the Osteopath. He relaxed my diaphragm area so much that I went hypo* at work,
hypo even with much reduced insulin at work and could do physio that found that
there were only small bits of sputum coming up, even if it was a horrible colour.
So cue a change of herbs, no.9/anti-heat Thursday, nos. 9 & 11 (stubborn sputum
combo) last night... but my diabetes quickly got worse again. I woke up at 6am this
morning realising the problem - I had over-dried myself.
The worst thing is that the last time it happened was either this month or last.
It explains the diabetes and I have a feeling it may also explain the colour of
the sputum. It certainly explains the harsh unproductive cough. I don't know whether
to be happy or sad.
Tue, Jul 19 2005
Well it seems I made a small error in judgement. I thought that I did not have a
sputum problem, but after going to the gym last night (without much strength) I
spent most of this morning coughing up the most disgusting sputum from the bottom
of my lungs - and sleeping.
Cause? I suspect that one or more out of the heat, no.10, Pinellia or the special
just-cooling tincture caused my sputum to dry up and not move. It explains the increasing
diabetes, digestion problems and even the bloated feeling I had. Nor is it the first
time I have had this problem - which only goes to show how effective the gym is!
I don't know if this problem will recur since I am not sure of the exact conditions
(weather and herbs) which sent me that way. Either way, hopefully I will hit the
gym at least once more before heading off to Wales for my holiday.
Nor have I managed to solve the problem of how to get to bed early...
Mon, Jul 18 2005
We moved into the new house on Thursday, and the old one no longer feels like home.
My new floors are wood laminate and already I am feeling the benefits of having
less dust from them. All my medication, apart from insulin and Creon, is now kept
in my room, and I am finding it even harder than usual to get round to doing my
nebuliser. However, other than that the new arrangement suits me.
The biggest problem however has been the huge amounts of heat, which has crept into
my lungs as phlegm heat. I saw my acupuncturist on Thursday who confirmed my diagnosis,
but there is little I can do about it except to keep taking no.10 and hoping it
doesn't creep into Fire Poison. I am also hoping that my increasing diabetes and
bad digestion is related and is not a symptom of the looming infection.
Tue, Jul 12 2005
Two days to lift off.
I am writing this just before I dismantle my computer. It won't be available again
for at least two days... what am I going to do!
To add to the confusion, I spent much of the morning doing physio, and some of my
sputum was dark green. Has the phlegm heat progressed to fire poison? Has the prolonged
use of no.10 with much relaxation helped me bring up long buried sputum? Or is it
some reaction to the heat? All I know is that before the move on Thursday I cannot
afford to be ill. However, I did manage to get my acupuncture appointment moved
to Thursday evening.
See you after the move.
Fri, Jul 08 2005
I woke up at 5am this morning, and thinking it was 7 went a-wandering. And on my
travels, I realised that my constant, thick phlegm bore an uncanny resemblance to
condition I have come across many times before, phlegm heat. Why had I not noticed?
Partly because it crept up behind the dust, and also a large part of me didn't want
to think about it. I am still not 100% confident, but I took some no.10 at 5 and
then proceeded to sleep for 6 hours. My sputum is different, but not cured yet,
but my fingers are crossed that I caught it in time before it turned into an infection.
My low insulin (currently 13/13) indicates I have, but then I have been taking formulae
which lower it.
Mon, Jul 04 2005
A week of dust and mayhem
I haven't been able to do much this week. All the moving has stirred up countless
dust, leaving me coughing on a regular basis. The herbs, nos 12 and 3, are doing
a good job of keeping my sputum flowing, and stopping any heat forming in the excess,
but don't seem to be able to stop it. Nor did increasing steroids, which only left
me feeling incredibly tired.
The worst part in all of this is that it disturbs my sleep. No matter what time
I get to bed, I never get more than seven hours sleep, and even that is disturbed
so I don't get enough of the really deep sleep. Consequently I have been too tired
to do much. This was not helped by worry over a friend, or by some of the heavy
moving taking place. However, I will hoover the house tomorrow while I have energy,
which will hopefully give a bit more temporary relief.
On a lighter note, not only do I have an excess of storage space in my new room
(which no doubt will be acquired by the rest of the family), but I have managed
to display two penguin mobile, a dragon puppet and a five foot cardboard penguin.
Unfortunately the large mobile is currently hanging where my head will be when the
computer is moved up there!