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.
Tue, Jul 20 2004
Acupuncture - good news
Yes, I am well! Despite almost missing the appointment (quick phone calls between
4 people and a quick getaway from work) it turns out I am doing well. So well that
we discuss the future. My acupuncturist described the current state of my lungs
- dry but irritable - as similar to treating redeemed smokers. Consequently we will
look into taking herbs to
cool the lungs.
Noticeably he said that he could never have considered that concept when he first
saw me almost three years ago.
The physiotherapist wanted to fulfill their aspect of the annual review. This basically
includes stretching the truth about how regularly I do physio then doing the shuttle
test - moving between two cones as the pace gets faster until you give up.
Last time I finished the test. This time there were IIRC 3 more minutes, but obviously
these were a lot faster. I was within 7 beeps of the end (halfway through the final
minute) when I realised I could not move my legs any faster. The conclusion was
that I was merely unfit. Sad since I have been fitter but much better news than
having bad lungs.
I might have had extra leeway had I been wearing trainers not bare feet - that extra
speed turning can make all the difference at the end. I mean, at school we had kick
boards to turn on!
Mon, Jul 12 2004
End of antibiotics
Actually not the end because I started taking the antibiotics too late. Lung function
was sufficient - 3.3/5.7 or something.
I was meant to be writing an essay for my Masters over the last two weeks. After
the antibiotics stopped I realised why I had been writing at a snail's pace. Normally
you don't notice how tired antibiotics make you feel because you are ill anyway
(or suffering lack of sleep due to the short space between IVs). I wasn't very ill
I did need them though.
Fri, Jul 02 2004
Walking in the rain
I was feeling good, I walked to work. It started to rain, but I declared that it
was so gentle that it wouldn't harm me, despite just wearing a shirt. Remember,
ladies and gentlefolk, waking in just shirt sleeves in the rain is a Bad Idea. I
had a 3-4 day period where my lungs filled up again and it was only through liberal
use of physio and herbs that I bounced back rather than circling down.
Thu, Jul 01 2004
Damp Heat. While I joke that this is like rising damp, what it really seems to give
is a strange lethargy (similar in fact to what you can feel on a muggy day, but
continuous). It felt like a cop-out explanation until I took tincture no.8. I had
been taking no.3 with no.7, so my acupuncurist added an expectorant to no.7 to make
No. 8 make me feel alive again, gave me the energy that had slowly seeped away.
Back to swimming, back to essay writing. Too bad the antibiotics I am taking drain
so much of it away again.