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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Tue, Aug 31 2004
There and back again

I had a scare last week. By Friday my lungs were feeling so bad that I thought I had better talk to the hospital about some oral antibiotics. The reply - that I (definitely) needed IVs - shocked me so much that I took different herbs to work. See, after Tuesday my lungs didn't feel quite all back, and my blood sugars started rising again so I thought I had better try this stronger dose of nos 2 & 3. On Friday I took some Lucid Channel to work. And I got better.

Unfortunately life is not perfect. Although my sputum is thin again and my blood sugars are down (I took the opportunity of respite not to stab myself 5 times a day), it is not a fantastically healthy colour and is getting that little bit darker every day. I am coughing a little bit throughout the day. And my chest and diaphragm are tight. I am making an appointment as I type with the Osteopath to solve the latter, and it may well help with the others.

But I am going away for a study week and I am not confident that I will walk away from it without a course of IVs afterwards. If something is going to go wrong, it will go wrong there. I will however get to enjoy Aberystwyth once more.

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Wed, Aug 25 2004
Kapow to diabetes

Well, not quite. But I did a lot of testing of blood sugars during supper last night after my session of acupuncture. As I started to eat I felt what could be a hypo so only took 13 units of M3 instead of what I had been taking (19 or 20). I took readings at two hour intervals - 6.7 / 9.1 / 7.6 - and then in the morning - 3.4!

Yes, one session of acupuncture dropped my insulin dependency by 6-7 units in the space of a few hours. Now to make sure my lungs clear up as well...

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Tue, Aug 24 2004
Know thyself

I went to my hospital appointment with slight trepidation since my lungs were still full of green stuff brought on from my adventures from last week (see Mon 16th). My results from the PDA trial boded well though and my lungs did feel like they did just before I went away.

So, lung function was 3.15/5.1 - not great FVC but a perfectly fine FEV1; My weight was above my ideal weight of 71.5; and my 3 month blood-sugar thingy was 6.9. While 4-6 may be normal human (I understand 6 is more normal than 4), 7-7.5 is good diabetic so 6.9 was cracking. All of which meant I was very casual about the worries of everyone since I knew I was doing fine. I did agree to actually get some blood sugar results for the diabetic team though, and to test my blood sugars before I went home from work if they gave me an extra kit. There is a standard worry about having a hypo while driving; understandable, but I don't think they realise how much self-control I really have. ^_^

The gunk I was bringing up really was a nasty colour so I promised to call back in one or at most two days if acupuncture could not solve it.

So, an hour later I turned up for my acupuncture appointment. Diagnosis: phlegm heat and no infection or fire poison. Cure: more draining of heat, and a point to strengthen the spleen; a mixture of numbers 2 & 3 taken in larger doses should also work to reduce heat (better hopefully than no.6 which I had been taking - it worked but was drying out my lungs too much); Prosperous Farmer later as a spleen tonic to cure spleen deficiency - and hence reduce my insulin dependency again.

We raised the question of what causes CF diabetes. Is it actual tissue damage or is it caused by secretions blocking the pancreas? Answers on a postcard.

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Mon, Aug 23 2004
Blog update

I have now written up some reference guides on Chinese herbs and an updated article - see above.

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Mon, Aug 16 2004
Weekend away

For the first time in ages I felt up to a whole weekend away, for a series of roleplaying games in Birmingham. I took the train since I was knackered after a whole morning cleaning my room.

I probably should have taken salt tablets, because despite the weather forecast it was hot right up until midnight - not to mention the heat from the hundreds of people. My silk shirt was covered in sweat on Friday, and by the end of the weekend my jeans were almost stiff. The timing of the games meant that I did not have many opportunities to eat, but I did manage to get at least one proper meal in every day. Most importantly, I slept in the (mostly) comfy hall of residence bed, if not for the 11 hours I needed (I did not get in much before midnight both nights).

That is the bad stuff. The good stuff - apart from two cracking games and a good one - was that I kept going so well. I walked about 2 miles 4 times AND had 16 hours of gaming AND ran around like a madman at times AND had the energy to leap over fences like a pro. I had a wail of a time and had the energy to do it.

It did eat at my reserves however, and it will probably take a week to fully recover them, but a few years ago that would have been a week or more off work. I fear that much of the work that the Acupuncture did to drain the heat from my lungs has been undone, but when I have more energy I will see what no.6, 3 and Pinellia can do.

I also found that the PDA can tap into wi-fi networks, and that there was one in the hall of residence (this site, for instance, came out very well on such a small screen, if a bit narrow). Later I found I had a weak signal for one at home as well. I will have to check, but if there is wi-fi floating about I could get free, if slow, internet. I will have to check the manual. Just occasionally there are perks to being ill.

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Thu, Aug 12 2004
Cooling acupuncture

And verily the needles did drain away the heat. There was a lot of heat in my lungs, but all very recent; within a day all the phlegm had turned thin and pale again. Very healthy lungs again.

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Tue, Aug 10 2004
New kit

The hospital have sponsorship from O2, the mobile phone company, for a trial using a mobile/PDA. The idea is that you fill in a simple questionnaire every night and then do a breathing test on a portable respirometer. This information is sent back to a spreadsheet in the hospital and it alerts the researcher/doctor whenever there is a consistent drop in results.

Two things occurred to me immediately: one is that this is a really good idea. Standard appointments take place every 1-4 months, but illness is rarely likely to strike conveniently; it also forces patients to think about their health more regularly. The second is that the questionnaire is rather too simplified.

It is an interesting experiment and I am curious to see how many times I am classed as "deteriorating" after a heavy weekend. I also get a PDA to play with.

As an addendum, it turns out that I have a "non-bleeding" port, meaning they cannot draw blood from it. Luckily, my elbow veins are still good for taking blood.

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Mon, Aug 09 2004
Return from holiday

Wow. Lots of Sun. I very rarely take salt tablets, but in heat like this I lost far too much salt from sweating.

Also I was surrounded by fields of wheat and barley being cropped which caused my lungs to relax. So although I became much fitter due to swimming once or twice a day, my lungs became much thicker.


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Posted at:Mon, Jul 04 2005 11 PM