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.
Mon, Jun 28 2004
This basically involves seeing everyone - X-Ray, lung function, dietician, pharmacist,
physiotherapist, CT scan and consultant.Since the dietician, pharmacist and physiotherapist
couldn't make it I actually managed to get home in time for lunch.
In fact the dietician was happy with a quick overview of my food intake since a)
I hadn't done a proper food diary and b) I was practically spot on my ideal weight.
That is what cereal does for you. I just wish some of my growing paunch was on my
muscles - in the middle of essay mood I just don't get out enough.
Lung function was down, but the X-ray showed scattered dark spots of sputum so we
settled for oral antibiotics - Azithromyicn and Ciprofloxapen again (the latter
with its susceptibility to sunlight would be terrible in a better Summer!).
I have stopped taking my lung function results down myself now I am no longer in
shared care. It is too much hassle to carry so many pieces of paper around. So I
have to go by memory for my lung function results. I think they were 2.7/5.5 (FEV1/FVC).
With all my swimming to improve my lung capacity my FVC is well over my expected
even when I am slightly unwell!
Tue, Jun 08 2004
Went smoothly. A staff nurse put her first flush through and I volunteered to let
whichever nurse was on to practice on me in future. Apparently most of the port
flushes happen during home visits, so not that many go onto the ward. Also, I decided
that swimming directly after a port flush (and risking infection through the needle
prick) was not worth it.
I have a theory on the diabetes, which is that I have stopped producing my own insulin.
Although I have been diabetic for 3 years or so, I have been producing a certain
amount of insulin all this time which has provided a certain amount of leeway with
the artificial insulin that I took. If my theory is right then I need to change
insulin regimes to gain more control.
Fri, Jun 04 2004
Osteopath - stiff diaphragm
Basically a lot of coughing recently means my lower lungs, especially my right diaphragm,
are very tight. The osteopath was not even able to fix it all in one session.
My blood sugars are doing funny things - I seem to be needing more insulin than
usual, as much as 22 units (although 24 was over the top).