Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004


> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
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.

Visit the CF Trust

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Mon, Jun 28 2004
Annual Review

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!

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Tue, Jun 08 2004
Port flush

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.

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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).

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Posted at:Mon, Jul 04 2005 11 PM