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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Sun, Jun 26 2005
More bad sleep

A bit better, I slept for five hours before coughing (after going to sleep at 1am - oops). Still I went back to sleep again for a couple of hours and had a good day. I am also slightly stiff from all the coughing. However, the bulk of the moving is done (the auctioneers are coming for some of our older furniture after which the house will feel very very bare), so I will try to return to the gym next week. I have also increased my steroids twice in the hope that it will solve my ongoing sputum factory problems.

I have tried various cocktails to get my cough right. Tonight's is a mixture of no.9 (too drying at the moment), no.11 (to open up the lungs after the coughing) and no.12 (possibly a bit TOO damp).

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Fri, Jun 24 2005
Today is brought to you by the numbers 5 and 12.

Despite seeing the acupuncturist yesterday, I still was woken at 5am by coughing. The new herb, no.12 - for hay fever and sputum, containing "wind herbs", may be slightly more effective than no.9, but taking it at 1am probably does not do much for preventing the buildup of sputum. Ah, well, that is my fault for playing on the computer too late at night.

Then of course the thunder and lightening set in. I thought the downpour might lull me to sleep, but evidently I was too much awake. Well I suppose it compensated for the 10+ hours of sleep yesterday.

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Tue, Jun 21 2005
Quick pollen update

A mild dose of nos. 3 and 5 last night got rid of the hard cough almost immediately, which was lucky since otherwise I don't know if I would have slept. Even so, I don't think I slept brilliantly and I am still producing. If anything I am producing more than yesterday (although it is less painful getting it up). This ties in with the excessively hight pollen count reported on the weather forecast, so it looks like my lungs are suffering from the pollen after all. And the whole thing just makes me tired.

The only good point about the whole thing is that it is running smoothly and is unlikely to send me anywhere near the hospital. On Thursday I will see if the acupuncturist can do anything.

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Mon, Jun 20 2005
5.30am Urk.

We are part of the "longest move in history" (according to my CF team!), and I need my beauty sleep. So why am I up at 5.30am coughing my lil lungs out? I -think- it is because I have been taking too much no.9 (probably pushing me towards a Yang imbalance) and so I have a very dry, tickly throat. It is not that I have nothing there - I do, and it extremely thin and a light yellow - but it should not make me cough so hard that I throw up (luckily there was only water in my stomach). Any chance for getting back to sleep was gone after that.

Enough of that. (Silly! After "researching" last weekend, I can't get Monty Python out of my head). Tuesday night I was feeling energised, Wednesday I was satisfied, Thursday I felt like an Elephant had trampled over me. Friday I staggered over with one more load (still on adrenalin I think) and went off to work. That left the weekend as recovery time, really only getting my energy back after a siesta on Sunday (hottest day of the year so far I think - I went red just by driving in it for 10 minutes). Anyway, more work today, more salt tablets and more shifting stuff (they want me to finish packing the attic - clearly my packing skills have improved from ten years ago!).

Hopefully I won't be writing the next entry at 5.30.

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Tue, Jun 14 2005
And I'm feeeeeeelin' good.

About half way through this morning's shifting of chairs and boxes, someone pointed out that I had a hospital appointment this afternoon. And lo I was pleased for all the shifting had done a fantastic job of clearing my lungs, as had the no.9 that I finally picked up from the acupuncturist yesterday. (By the time I had realised I was running out he had gone on holiday, then I was busy last week preparing for my dad's retirement bash. I have been taking nos.11 & 3 as a stop gap.)

So in the parents car (they were using my van to move stuff) I headed to the hospital to a busy and chaotic clinic where the nurses were juggling patients and rooms trying to keep everyone apart (and succeeding with style!). I had a nice sit down reading my book for a while too, which after a hectic morning was nice. However the key point about this joyful tale is my lung function results.

3.25 / 5.7 (about 80% / 110%) after a FEV1 of 2.4 last time. Woo! I knew I felt healthy, but I did not expect this. The only downside is my thick sputum, but between dust and dehydration (from the hot weather), and from it probably being stuck inside me for a while.

We had a short discussion (debate) about the merits of DNAse. For a long time I have taken DNAse on an irregular basis depending on whether I thought it would help. I also said how I found taking too much made my sputum too thin. The consultant didn't accept this, saying results showed that results showed less dense sputum was always easier to get up. Disagreement 1.

Disagreement 2 was over whether antibiotics caused "Static Chi" (a term he was at least familiar with, although it could be because of me!). He was keen to point out how effective Azithromycin was (which I cannot disagree with despite the problems). They are doing a study over inflammation of the lungs before and after antibiotic treatment and expects it to show the inflammation decreases. Does this disprove my theory? I don't know, but I will mention it to my acupuncturist and osteopath when I see them.

I also helped with a new sheet he is trying to use to speed up the medical side of admission administration. It is a good idea which I merely tweaked - I hope it does help things along.

Despite our disagreements, there is a sense of satisfaction of having doctors who listen to you. Speaking of which, this is a message to all you pediatric consultants in Norfolk: YOU NEED TO LISTEN TO YOUR PATIENTS MORE. This is a public service broadcast.

PS. It seems my goal to not use the computer at home failed miserably. Still, I think I am using it less than I was and at least I have a stretch that should sort out my neck. On vertebrae: "3, 4, 5 - keep the diaphragm alive".

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Thu, Jun 09 2005
Away from computer

Things are looking up for my health, which is great because it means I should be able to handle my dad's retirement weekend with little more than a Bricanyl inhaler. As the Azithromycin wore off I left the fugue state it left me in, and I could resume normal sleeping hours. For two nights in a row I went to bed at 11pm - I was shocked! My sputum is thin and light green or better - all that bothers me is an occasional unproductive cough, partially sorted by the Osteopath this morning.

For similar reasons I have made a personal pledge to stay off the computer as much as possible for the next two weeks. Firstly it takes up too much time and with the do this weekend and lots of moving all next week I cannot risk that (it is addictive too - I find it virtually impossible to say, "I'll just be 10 minutes"). Secondly, my neck is starting to lean forward (heading towards being a mini-hunch, following the lead of many in my family), and the advice from my Osteopath is to cut some of the computer time. Obviously, this is near impossible at work, but at least I can do it at home. For that reason, there may be an even bigger gap in blog updates than usual.

On that note, see you in a couple of weeks.

P.S. Thanks to everyone writing in with their support. It is much appreciated!


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Sun, Jun 05 2005

There was a recent post on the CF Trust forums that involved discussion of "Static Chi", a stasis of energy in the body that prevents infection from being cleared properly*. After my spell on Azithromycin I had the same experience, and it made me wonder what all these antibiotics are doing. They may clear some infections, but is the cost that our immune systems suffer? And if static chi propagates and is not dealt with, what chance is there of recovery?

Meanwhile, I have had an interesting few days. My diabetes is coming down, in a sense. After meals, my sugar go somewhat high (not scary high, but up there), then drop slowly over the passing hours until shortly before my next dose is due, I go slightly hypo. The amount of insulin I need is dropping (currently I am on about 23/20), but not in a completely healthy manner. However, I have been through this before and last time it stabilised satisfactorily.

Unfortunately my rib muscles are as stiff as planks which is leading to a lack of movement and energy, and maybe a build-up of sputum (although at least it seems to be a good colour). This meant, for instance, I did very little yesterday. However, with my Dad's retirement only a week away, time is of the essence. Here is hoping that today's physio gets things moving again.


* This is a very rough description - the condition is much more than that.

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Fri, Jun 03 2005
Off antibiotics

On Tuesday I phoned the hospital about various things, including coming of Azithromycin. During the last fortnight my diabetes had got slowly worse every day and my insulin intake was up to 33/33 (from 18/18 before I started AZ). My digestion had also got worse, requiring more creon. And I was getting more and more tired, having to push myself to do anything. I saw my acupuncturist on Thursday and neither his treatment nor the herbs - no.9 - had much impact.

However, I stopped taking them yesterday and wow! I went to the gym in the evening, I have enough concentration to write this blog and this morning I coughed up some horrible stuff that had obviously been sitting in my lungs. I am even back to being able to survive short nights - somewhat.

I am not all there yet though - there is still stuff on my lungs which was both not shifted by the AZ and possibly even made worse by it - I have a hunch that AZ caused this static chi that causes so much havoc. And over 10 days without going to the gym - and more without swimming - have left me not as enduring, although almost as strong.

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Posted at:Tue, Jul 05 2005 12 AM