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.
Thu, Mar 31 2005
After the holiday
I am knackered. This is partly my fault and I suspect partly due to an infection
I went to 3 services over Easter including ferrying a friend back and forth. The
only one I missed was on Mournday Thursday when I was too tired after coming back
from work. Those days leading up to Easter Day I spent pottering on the computer
by and large.
Then Monday I was at our new house for six hours, moving things but mostly cleaning
the conservatory vigourously. That woke me up a bit, but by Tuesday I was already
tired. I spent most of the morning slaving away trying to find ideas, pictures and
designs for my father's retirement card (we got most of the way there, eventually).
I did some more physical work in the afternoon, but it was very clear by the time
that I knocked over the same bottle of window cleaner twice that I was too tired
Why then did I run my werewolf game until midnight and stay online until almost
Back to work on Wednesday, and between getting up late and sending a rude letter
to the TV licensing people I did not have time to shave. Luckily the gym was back
open and I did a full basic session, missing only the energy draining rowing machine.
I knew that not having the gym available was going to be hard on me, and the gunk
I produced afterwards proved it.
My trouble now is: I am still tired and I am producing green sputum. Yet it is fairly
fluid and I do not know how much bred over time. Unfortunately I have a bad feeling
about this, but until it gets decisively worse I am not going to talk to the doctors.
I may opt for an inconvenient acupuncture appointment though if it continues next
There is one other factor unmentioned: carpets. It is carpet laying season in our
new house and that means all the carpets we have stored up the attic from the houses
of dead relations are coming down - and spreading their dust, including the small
mountain piled in my room. Plus the mayhem means that hoovering is out of the question.
So how much of the problem is now being caused by that? Answers on a postcard.
Tue, Mar 22 2005
Back from wedding
Well I survived and the biggest hurt I feel is to my wallet. I took Pinellia and
no.10 with me, taking them twice a day (normally 5:1). My sputum is still thick,
but if anything I have overdried my lungs. I will go back to no.9 tonight to tackle
it from another angle.
I also went dancing for first time in several years, which I probably could not
have done without the recent trips to the gym. Yay! gym.
Sat, Mar 19 2005
Off to a wedding
Earlier in the week I did not know if I was going to make it. On Wednesday I just
felt like I had no energy and I was all hot; I took a day off to recover and by
the end of the day was feeling better. The way it passed I think made it merely
a bug, but I must be low if a one day bug can lay me low - and make my sputum go
So a couple of days of taking heat herbs (no. 10) and by Friday my lungs were too
dry. I still cannot get it right because although the colour is better my sputum
is still thick, and still infected. I ordered some more no.10 from my herbalist
and Pinellia from the herb distributors Balance. Both of those I can take easily
up to Wakefield for the wedding reception.
Thursday I saw the fitness expert about a training program. 5 minutes easy work
on cross-trainers, ten minutes of gentle work on the bikes and 3-5 minutes of gentle
work on the rowing. We lowered the difficulty on the rower from 6 (about water pressure)
to 4 (about the pressure that the rowing club use). So more exercise but - slightly
- gentler than I have been doing. I try it out properly today! The interesting part
though was the weight training. I have always been scared of this because of various
horror stories and because my eyes glaze over in confusion when I see a weights
room. However I was given 6 machines to use, 2 back, one chest, one legs, one shoulders
and something else. It was amazing but after just brief goes on them, my lungs felt
so much stronger and more open. I really hope it will continue.
Friday I saw the osteopath, who found some problems but basically said that I was
nowhere near as bad as I thought I was - especially my diaphragm. Of course that
may mean that the restriction I am feeling is sputum. Grrrrr.
Next entry will be after the wedding where you will see if I survived.
Tue, Mar 15 2005
I am feeling just a little bit tired, although I suspect that is due to going to
bed late and getting woken by the alarm twice in a row. I also forgot to take my
herbs so my chest was bothering me a little.
I have been taking Pinellia, which has been good at cutting through the phlegm.
I have even been bringing up some plugs - I *think* that I am clearing out stuff
after the various bugs, although there is always the possibility of something current.
I moved to no.3 last night to give more of a tonic, but I think the Pinellia may
have been more useful. Most of the sputum is a yellow colour, but it is still quite
On the positive front, despite the trainer being ill for our session yesterday,
I managed 20 minutes of good cycling with fewer problems than rowing. It does not
help my diaphragm which has become very tight again *already*. Osteopath on Friday.
Fri, Mar 11 2005
Time and space
I have been to the gym twice, seen the doctor once and had acupuncture.
Both gym sessions - Saturday and Monday - involved rowing for a kilometre and then
coughing a lot (well, a bit). On Monday I thought I ought to test out something
else, so I went on a cycling machine for another kilometre which seemed very easy.
However both sessions seemed to tire me out for two days, although much of that
could have been the incipient bug I lost last night. Both sessions also opened up
my lungs a lot, including clearing trapped sputum. I still need to find something
to stretch my diaphragm.
I saw our lead consultant on Wednesday, and after the lung function decided that
more exercise was not an option. My lung function remained at 2.5/4.5 although a
week of exercise is not enough. It was suggested that I went on the slight unknown
quantity that is Azithromycin - they know that it often helps, but they are not
quite sure why. The peril is that repeated "exacerbations" of pseudomonas
accelerate lung decline, but it remains to be decided what an exacerbation is. Since
I am positive it would reduce my energy still further, I asked to leave it until
I had progressed with my gym sessions. I have two months to prove to myself that
I can improve my lungs that way.
Finally, I had acupuncture just as the latest bug - minor but badly timed - disappeared.
He did a great job of clearing heat, opening up the lungs AND the relaxing the diaphragm.
After years of only using 6-8 needles, he shot up to 12. I am slightly concerned
that he did in fact detect some heat - I had been working on the assumption there
The herbs I have been taking are the right ones, mostly: a mixture of no. 9 and
11 which opens up my lungs and gives me spleen/liver tonics to boost my immune system
again; and Pinellia to disperse phlegm with a lung tonic. After he opened up my
lungs still further and released yet more trapped sputum I am thinking I need to
take more Pinellia for a few days.
Fri, Mar 04 2005
Both of these sessions were very helpful (and both in one morning... eep!). The
physio session fairly clearly demonstrated that there was very little in the way
of sputum, even in the deepest parks; not only that but it was all fluid and yellowy-green
(not brown). So while it would ideally be pale yellow, I am still fairly happy.
The indications from this are that I really do not have any infection problems (right
The Osteopath found I was incredibly stiff right down my back and chest and spent
most of the session working that, and a touch on my neck.
After both of these sessions I can feel so much more of my lung than I could before.
Wow! I will not exercise today after being worked on, but hopefully the increased
energy from the greater lung capacity will get me to the gym tomorrow and Sunday
(and onwards) and I keep it this open.
Thu, Mar 03 2005
IVs all over
I had everything removed yesterday. Even before the needle was removed from the
port, I started to relax and recover bounce and in two hours I coughed up more than
I had in the previous three days. That trend has continued to an extent, although
there is a lot more to be done - my lung function remained down at 2.55/4.15 (although
I can put much of the latter down to tiredness - I normally push my FVC hugely but
had no energy yesterday).
After all the IVs I see no evidence that they helped at all, although it is possible
that if I had had more energy for physio something might have happened. In my favour
I never had much success even when I tried physio. With the bad effects from the
weather as well, the hospital (finally) accepted my plan.
I am seeing them again next Wednesday. In the meantime I will
see the physios
see the osteopath
go down the gym
get my sleep back
Hopefully, we will be able to draw some conclusions from the result.