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, Nov 25 2005
Apart from a certain lack of concentration in the mornings (which may in itself
be a tactic to avoid continuing my Masters studies), everything seems to be going
I saw the acupuncturist on Tuesday, who pretty much gave me a clean bill of health
- once more everything was clear enough that he could tackle my kidney problem.
While not a critical area, the kidneys are fundamental according to his theory of
CF. Winter also happens to be the kidney season, as Autumn was for the lungs. In
light of this he did some work on the lungs, and gave me a new tincture, no. 12,
for the kidneys. So far it seems to be working - my diabetes, stalled at 21 units
of insulin per day - is going down again, and I seem to be clearing light gunk from
the bottom of my lungs.
The latter is helped by last night's swimming - the first time I have had proper
exercise since the cyst was removed. I managed 8 lengths - not particularly stunning,
but nor was I truly struggling. The cyst itself, now the giant scab has fallen off,
just has a small patch of skin left to reform. The hard skin around the site is
mostly back to normal, and there is no sign of the swelling returning (yet).
Fri, Nov 11 2005
What a shock it was to find that the practice nurse is bang on time. I just did
not expect that. (Yes, I was a little late and got some lip for it.) Anyway, she
changed my dressing very nicely. She was a bit nonplussed by the fact that the site
was not oozing, which she expected. Did the surgeon do that good a job? Are the
antibiotics "drying it out"? Is it some strange thing beyond the ken of
men? Who knows, but it sounds better for it not to be oozing.
I forgot to detail why I was doing strange diaphragm movements with the acupuncturist.
He wanted to know if I could relax my diaphragm, and came to the conclusion that
I could not - a result of it being constantly in use and the frequent hits from
coughing. He tried showing me a yogic technique whereby you breathe out all the
way - then breathe out some more. It did not work on Tuesday, but I have been doing
some practice since and I am sure that, even if it has not relaxed my diaphragm
properly, it has at least been an efficient way of moving stuff that didn't want
Thu, Nov 10 2005
The six hour operation
I saw my GP yesterday morning about a cyst that appeared on my shoulder. Actually
it has been there for about 18 months ever since I pulled a hair out there (well,
it might have been coincidence), but it didn't do anything. Then about 2 weeks ago
it started getting bigger and sorer until simply wearing a heavy jacket would hurt
it. It was right under my seat belt too, although the freezer clip (used to protect
my port) could keep most of the pressure off it. Curiously acupuncture the day before
had removed a lot of the irritation.
My GP spoke to the surgical team who were going to contact me when I went into hospital
for a port flush. Which I did. The flush went smoothly, my weight is up and my lung
function is solid 3.1/4.95. I would like my FVC higher, but all things considered
I am very pleased. And then I went up to the CF ward and waited as directed... and
waited... until half an hour had passed and I asked the nurses to bleep the surgeon
- another hour to wait.
So of course I went off to work. In the end I was only 25 minutes late and nobody
minded. I got a call from a barely apologetic surgeon who put my leaving down to
me not liking hospitals. Feh. He suggested I found my way to the Surgical Assessment
Unit after work.
I arrived on the Unit before 6pm and was given directions on its ward by a nurse
who thought I was a doctor, such was my confidence and comfortableness in a hospital
setting(!). Once that was settled the surgeons arrived fairly promptly by hospital
standards and decided that a) they should drain the cyst and b) they should do it
in surgical conditions (i.e. theatre) because it was so close to my port . (and
c) they wanted to take a swab to see if it was infected.
The difficulty then was waiting for a theatre to be available. Luckily I had brought
a book with me (I read 74 pages during the wait!). About 10.10 they took me into
a side room to prepare me then disappeared so long they had to frantically prepare
me when the nurses* came to pick me up. Pretty typical hospital routine. And then
I remembered my diabetes.
* At nights surgical nurses double up as bed-pushers. Really.
I had not eaten since 1pm and had been relying on a packet of skittles I carefully
bought in anticipation of a couple of hours wait. Nobody had looked at my notes,
done a drug chart or anything. When they checked my blood sugars they were 3.4 -
worryingly low. The ward nurses assumed the surgical team would deal with it, while
the surgeons were fairly blasé. Luckily one of the surgical nurses took heed
of my worry and fed me sugar which brought me back.
Apart from that the operation had little problems, despite my theory that this was
one of the first operations done alone by this young surgeon. It was after all a
minor operation, and a good practice case. She did not remove the cyst lining which
is what produces the pus/fluid but I think that would have been more difficult and
was not what was agreed anyway. My main regret is that I forgot to ask to see what
The final hiccup of the day was the lack of Creon. The surgical nurses had phoned
the ward at my request to arrange for them to get some, but when I got back nothing
happened. It was only when the nursing assistant realised I could not eat until
I had my pills that something was done. And at my advice they got them from the
usual CF ward. It really does pay to know yourself and the hospital system. The
corned beef sandwich was nice though!
My Dad had by that stage given up worrying at home and come down to the hospital,
bless him. It annoys me that they don't trust me to look after myself, but it did
mean I did not have to walk up a steep hill to my van and drive home. We got home
about 12.45 in the morning. Still, I knew it would take something like this to get
my cyst dealt with.
I still have to have the dressing changed (officially at 11pm tonight, but it will
be about 11am tomorrow at the GP's surgery), and the second dressing removed a week
later. I can't shower until tomorrow so I am going to be exceedingly smelly (unless
I try and find a way round it). They also extended my antibiotics for another 5
days, which I am not unhappy about.
On a different note I saw the acupuncturist on Tuesday. He drained huge amounts
of heat out as I expected, and after trying a yogic exercise to relax my diaphragm
(I failed) I coughed up some horrible gunk from the bottom of my lungs. Despite
my increased lung functions it seems there is still more that I can do. After some
discussion I will carry on taking the anti-heat tincture along with some no.11 to
Tue, Nov 01 2005
Wow! As mentioned in the last entry I saw the physio this morning. After a hectic
afternoon at work I collapsed on the sofa (normally when I say I am going home to
fall down I don't mean it so literally). Between a short night last night, the physio,
the antibiotics and work I was knackered.
I didn't quite fall asleep but I did spend 3 hours there, and when I moved it was
to cough - a huge mouthful from really deep down. It may taste disgusting but it
does tell me where it comes from. The actual volume I brought up is not great, but
in the last 3 hours I have coughed up significant amounts from the deep and more
I think is on the way. All thanks to physios - and the antibiotics and the herbs.
Back on antibiotics
In reality, this shouldn't be a shock. And this time I really do need to be on them
because although most of my lungs are clear (supported by last night's swim), there
a large patch of thick, infected sputum in the bottom right of my lungs. After my
HAT treatment on Wednesday, I wandered down to the clinic where we did my lung function
(2.3 / 4.8 I think - I no longer keep all my own records). I picked up the antibiotics
in the evening (walking down and up the long hill between work and the hospital)
and arranged for a session of physio.
The first session on Thursday started things moving but left me fairly tired for
the rest of the day. The percussion at the end clearly got things moving and just
after I got to work I coughed up huge wodges of green slime which I had to carefully
hide as I navigated round the library to somewhere I could wash them off my hand.
I am sure you all appreciated that image. I was planning to go to the gym but I
was far too tired.
Ideally the next session would have been Saturday but with the weekend it ended
up on Friday. Not as much came up which was good news, but part of that because
we had cleared the top stuff and were starting to move on the thick gudge. Again,
I had a weekend of leisure...er rest. I actually managed to do some stuff I was
meaning to do although I did get hooked into game. I pulled back slightly on my
anti-heat tincture since I was running out and unsure if I could get any more this
week. This was a mistake since it was the only thing keeping my blood sugars in
check, and as it happens I can get some more this week.
Work yesterday was tiring. I hope it was because lots of things were going wrong,
but it might also have been because of the infection and physio. I went swimming,
as per my plan, and only did 20 minutes. This was six lengths and in all fairness,
I stopped because I had a stitch. I was moving fairly fast and certainly had better
breath control than sometimes, but was not quite able to sustain either underwater
swimming nor 4 strokes per breath for as long as my best. Still, it does back up
my theory that most of my chest is clear.
I have another physio session this morning, and my plan is to go to the gym (or
a jog!) tomorrow and the pool again on Friday. I still haven't done any work on
my Masters though :(
Finally, to save effort I directed my fellow choir members to the full write up
of the operation I put here last month - and lo and behold the entire church seems
to have read it now! Remind me not to tell them any of my dark secrets ;)