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
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February 2006
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December 2005
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April 2005
March 2005
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December 2004
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> 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.

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Fri, Sep 30 2005
Resolving the Knot

One description Chinese medicine gives lung disease is "knotty" - an entangled mess, that seems to get tighter as you pull it and which is very hard to see where to get started. I have had this very problem over the last few weeks. My concentration and energy have been bad and I didn't manage to blog.

My sputum got greener, my diaphragm tighter, my diabetes worse and eventually my digestion failed (I hardly ate yesterday). Nothing I took seemed to fix it - nos. 10 and 3 removed some symptoms temporarily but overdried my lungs considerably which caused more problems over the next two days; no. 11 seemed right, but had little effect; and the random other herbs again either made things worse or just didn't help.

As it happened I didn't have the right herbs, although the anti-heat herbs I had from the Summer were probably the most suited (but not strong enough). I saw the acupuncturist today who even in one session drained a lot of heat from my liver. I have managed to eat, my sputum is lighter and thinner and with some luck by blood sugars will start returning to normal. I now have a new unnumbered anti-heat tincture, which also contains something that should heal the liver after anaesthetic. (It is unnumbered because of the anaesthetic bit, which I won't need again for a while.)

The diagnosis, by the way, is that heat was made in my liver, which spread to my lungs, causing phlegm heat - but no.10 and even no.3 treat damp heat largely, so that is why they dried me out. This in turn made more heat in the liver. This is a good example of "looking like an infection, but not".

While it has been a nightmare worrying about my condition, I am very pleased to have it on the mend before surgery. I go in tomorrow (Saturday) to start IVs, will have the operation Monday or Tuesday and from experience I will be out two days after that. They wanted to start IVs on Thursday, merely because they now take levels one day later. They didn't think that if I need a portacath that a venflon in my veins would not last 4 days. Thank goodness for stubbornness.

by Picks-at-Flies  Comments

Sat, Sep 17 2005
Tired - but why?

I am getting tired easily at the moment. I went down the gym last night and that cleared my chest enormously. But for the last two nights I have started closing my eyes at 10pm, much earlier than normal.

For sure there is stuff in my lungs, although I am fairly convinced that is mostly harmless - either that or it is developing into an infection. My hunch is that I have spent too much emotional energy on things like thinking about my port operation and the Rage tourney I am running. The latter has certainly kept me up late, since many of the other players are in the US or other countries around the world.

The fact is, I am not worried because even if it is a slowly brewing infection, exercise will keep it steady and then I am having antibiotics with the operation anyway.

by Picks-at-Flies  Comments

Fri, Sep 09 2005

The lack of entries is due to lack of concentration. While I have been worried about my port canula, it seems my lungs have crept from being dry to having phlegm heat. I blame the long run of hot weather personally. I did not realise until I saw the acupuncturist on Tuesday, and then used 9 & 11 for stubborn phlegm for stubborn phlegm. Last night I finally got smart and took number 3, woke up about 5 getting rid of some nice green stuff and even managed to free my bowels (I can eat again).

The upshot of this? I can finally concentrate again (at least for the moment). It means the several nights of 10 1/2 hours sleep were really necessary.

I also have decided that the growth left of my eyes really is getting bigger, and even painful - probably a cyst. With some luck, I can persuade the surgeons to remove it at the same time as the port canula since I would hate to go under anaesthetic twice, knowing what it does to me.

Also we finally heard this week that my operation will be on the 3rd October, or at least that week. Presumably they will slot it in when they can.

by Picks-at-Flies  Comments

Posted at:Wed, Oct 05 2005 9 PM