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, May 27 2004
Acupunture - a new tincture
I have not sent off a script for DNase, everything seems to be moving well without
it. Although I feel I have some old sputum in the back of my lungs, the acupuncturist
focussed once more on my spleen. The new tincture - no. 7 - is the first proper
spleen tonic I have taken: all the other tonics have focussed on the lungs. I think
it has been having an effect because since I started taking it my I have been both
feeling more bouncy and bringing up lose rubbish. Indeed, I managed to survive 5
late nights on a trot (this is my 6th!) although I will need proper sleep soon.
Fri, May 14 2004
A slightly short session since I was late. He confirmed that it was my scapula muscles
(or similar) - that pass down the neck and onto the back - which were tight. It
is still a defensive reaction to the port. It is interesting to trace the movement
of my scar across the chest as it changes shape and location.
The rest of my lungs are on good form, but my sputum is thick so I think I shall
order the DNase on Monday.
Tue, May 11 2004
My lung function is up, but not a lot. Blood pressure is normal. I am bringing up
some really yucky stuff. It is unlikely to be an infection, since I have just finished
a course of oral antibiotics (this ended yesterday), but it is hay fever season,
my lungs are tight and the port is still causing wierdness/irritation. I also stopped
DNase on Sunday, which might or might not be having an effect. Prescription: keep
an eye on things, hold extra steroids in reserve (again) and I have a script of
DNase on hand in case I need it.
On other matters, my shoulder (actually my upper ribs on my back) are killing me.
Not used to this kind of steady pain I chose to cancel my osteopath appt. on Friday
since it was too close to the acupuncture. Silly me. I has the physios look at it
(grudgingly!) and they gave me some exercises and were quite damning about computer
use. I have also found aspirin works a treat. Osteopath on Friday.
Also did a few blood sugar tests and... I am not doing as well as I thought I was.
(I had to fend off a hypo as I walked home yesterday, which I thought was a sign
of decreases insuling dependency; apparently not.)
Thu, May 06 2004
The acupuncturist commented on my lots-in-lots-out digestion, high insulin-dependency
(currently on 20 units morning and evening), slight lack of energy and little coughs.
He diagnosed it as spleen deficiency, also known as lack of central chi.
I felt so much better after treatment that I walked back to the library to write
essay. He seems to have given me my bounce back (or at least some of it). Prescription:
take Prosperous Farmer (spleen tonic) and a bit of Lucid Channel (spleen tonic with
Also had a port flush. Went well, and next time will be practice for a ward nurse
- the new CF unit in Bristol looks very promising and they are empowering the nurses
Mon, May 03 2004
Blood pressure results
Some typical results are:
Morning - 120/80, 90/60
Midday - 112/76
Evening - 110/60