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, Jun 26 2005
More bad sleep
A bit better, I slept for five hours before coughing (after going to sleep at 1am
- oops). Still I went back to sleep again for a couple of hours and had a good day.
I am also slightly stiff from all the coughing. However, the bulk of the moving
is done (the auctioneers are coming for some of our older furniture after which
the house will feel very very bare), so I will try to return to the gym next week.
I have also increased my steroids twice in the hope that it will solve my ongoing
sputum factory problems.
I have tried various cocktails to get my cough right. Tonight's is a mixture of
no.9 (too drying at the moment), no.11 (to open up the lungs after the coughing)
and no.12 (possibly a bit TOO damp).
Fri, Jun 24 2005
Today is brought to you by the numbers 5 and 12.
Despite seeing the acupuncturist yesterday, I still was woken at 5am by coughing.
The new herb, no.12 - for hay fever and sputum, containing "wind herbs",
may be slightly more effective than no.9, but taking it at 1am probably does not
do much for preventing the buildup of sputum. Ah, well, that is my fault for playing
on the computer too late at night.
Then of course the thunder and lightening set in. I thought the downpour might lull
me to sleep, but evidently I was too much awake. Well I suppose it compensated for
the 10+ hours of sleep yesterday.
Tue, Jun 21 2005
Quick pollen update
A mild dose of nos. 3 and 5 last night got rid of the hard cough almost immediately,
which was lucky since otherwise I don't know if I would have slept. Even so, I don't
think I slept brilliantly and I am still producing. If anything I am producing more
than yesterday (although it is less painful getting it up). This ties in with the
excessively hight pollen count reported on the weather forecast, so it looks like
my lungs are suffering from the pollen after all. And the whole thing just makes
The only good point about the whole thing is that it is running smoothly and is
unlikely to send me anywhere near the hospital. On Thursday I will see if the acupuncturist
can do anything.
Mon, Jun 20 2005
We are part of the "longest move in history" (according to my CF team!),
and I need my beauty sleep. So why am I up at 5.30am coughing my lil lungs out?
I -think- it is because I have been taking too much no.9 (probably pushing me towards
a Yang imbalance) and so I have a very dry, tickly throat. It is not that I have
nothing there - I do, and it extremely thin and a light yellow - but it should not
make me cough so hard that I throw up (luckily there was only water in my stomach).
Any chance for getting back to sleep was gone after that.
Enough of that. (Silly! After "researching" last weekend, I can't get
Monty Python out of my head). Tuesday night I was feeling energised, Wednesday I
was satisfied, Thursday I felt like an Elephant had trampled over me. Friday I staggered
over with one more load (still on adrenalin I think) and went off to work. That
left the weekend as recovery time, really only getting my energy back after a siesta
on Sunday (hottest day of the year so far I think - I went red just by driving in
it for 10 minutes). Anyway, more work today, more salt tablets and more shifting
stuff (they want me to finish packing the attic - clearly my packing skills have
improved from ten years ago!).
Hopefully I won't be writing the next entry at 5.30.
Tue, Jun 14 2005
And I'm feeeeeeelin' good.
About half way through this morning's shifting of chairs and boxes, someone pointed
out that I had a hospital appointment this afternoon. And lo I was pleased for all
the shifting had done a fantastic job of clearing my lungs, as had the no.9 that
I finally picked up from the acupuncturist yesterday. (By the time I had realised
I was running out he had gone on holiday, then I was busy last week preparing for
my dad's retirement bash. I have been taking nos.11 & 3 as a stop gap.)
So in the parents car (they were using my van to move stuff) I headed to the hospital
to a busy and chaotic clinic where the nurses were juggling patients and rooms trying
to keep everyone apart (and succeeding with style!). I had a nice sit down reading
my book for a while too, which after a hectic morning was nice. However the key
point about this joyful tale is my lung function results.
3.25 / 5.7 (about 80% / 110%) after a FEV1 of 2.4 last time. Woo! I knew I felt
healthy, but I did not expect this. The only downside is my thick sputum, but between
dust and dehydration (from the hot weather), and from it probably being stuck inside
me for a while.
We had a short discussion (debate) about the merits of DNAse. For a long time I
have taken DNAse on an irregular basis depending on whether I thought it would help.
I also said how I found taking too much made my sputum too thin. The consultant
didn't accept this, saying results showed that results showed less dense sputum
was always easier to get up. Disagreement 1.
Disagreement 2 was over whether antibiotics caused "Static Chi" (a term
he was at least familiar with, although it could be because of me!). He was keen
to point out how effective Azithromycin was (which I cannot disagree with despite
the problems). They are doing a study over inflammation of the lungs before and
after antibiotic treatment and expects it to show the inflammation decreases. Does
this disprove my theory? I don't know, but I will mention it to my acupuncturist
and osteopath when I see them.
I also helped with a new sheet he is trying to use to speed up the medical side
of admission administration. It is a good idea which I merely tweaked - I hope it
does help things along.
Despite our disagreements, there is a sense of satisfaction of having doctors who
listen to you. Speaking of which, this is a message to all you pediatric consultants
in Norfolk: YOU NEED TO LISTEN TO YOUR PATIENTS MORE. This is a public service broadcast.
PS. It seems my goal to not use the computer at home failed miserably. Still, I
think I am using it less than I was and at least I have a stretch that should sort
out my neck. On vertebrae: "3, 4, 5 - keep the diaphragm alive".
Thu, Jun 09 2005
Away from computer
Things are looking up for my health, which is great because it means I should be
able to handle my dad's retirement weekend with little more than a Bricanyl inhaler.
As the Azithromycin wore off I left the fugue state it left me in, and I could resume
normal sleeping hours. For two nights in a row I went to bed at 11pm - I was shocked!
My sputum is thin and light green or better - all that bothers me is an occasional
unproductive cough, partially sorted by the Osteopath this morning.
For similar reasons I have made a personal pledge to stay off the computer as much
as possible for the next two weeks. Firstly it takes up too much time and with the
do this weekend and lots of moving all next week I cannot risk that (it is addictive
too - I find it virtually impossible to say, "I'll just be 10 minutes").
Secondly, my neck is starting to lean forward (heading towards being a mini-hunch,
following the lead of many in my family), and the advice from my Osteopath is to
cut some of the computer time. Obviously, this is near impossible at work, but at
least I can do it at home. For that reason, there may be an even bigger gap in blog
updates than usual.
On that note, see you in a couple of weeks.
P.S. Thanks to everyone writing in with their support. It is much appreciated!
Sun, Jun 05 2005
There was a recent post on the CF Trust forums that involved discussion of "Static
Chi", a stasis of energy in the body that prevents infection from being cleared
properly*. After my spell on Azithromycin I had the same experience, and it made
me wonder what all these antibiotics are doing. They may clear some infections,
but is the cost that our immune systems suffer? And if static chi propagates and
is not dealt with, what chance is there of recovery?
Meanwhile, I have had an interesting few days. My diabetes is coming down, in a
sense. After meals, my sugar go somewhat high (not scary high, but up there), then
drop slowly over the passing hours until shortly before my next dose is due, I go
slightly hypo. The amount of insulin I need is dropping (currently I am on about
23/20), but not in a completely healthy manner. However, I have been through this
before and last time it stabilised satisfactorily.
Unfortunately my rib muscles are as stiff as planks which is leading to a lack of
movement and energy, and maybe a build-up of sputum (although at least it seems
to be a good colour). This meant, for instance, I did very little yesterday. However,
with my Dad's retirement only a week away, time is of the essence. Here is hoping
that today's physio gets things moving again.
* This is a very rough description - the condition is much more than that.
Fri, Jun 03 2005
On Tuesday I phoned the hospital about various things, including coming of Azithromycin.
During the last fortnight my diabetes had got slowly worse every day and my insulin
intake was up to 33/33 (from 18/18 before I started AZ). My digestion had also got
worse, requiring more creon. And I was getting more and more tired, having to push
myself to do anything. I saw my acupuncturist on Thursday and neither his treatment
nor the herbs - no.9 - had much impact.
However, I stopped taking them yesterday and wow! I went to the gym in the evening,
I have enough concentration to write this blog and this morning I coughed up some
horrible stuff that had obviously been sitting in my lungs. I am even back to being
able to survive short nights - somewhat.
I am not all there yet though - there is still stuff on my lungs which was both
not shifted by the AZ and possibly even made worse by it - I have a hunch that AZ
caused this static chi that causes so much havoc. And over 10 days without going
to the gym - and more without swimming - have left me not as enduring, although
almost as strong.