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
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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, Sep 28 2004
Rising diabetes

My diabetes is still getting worse. I am taking 35 units morning and evening and I still am more Hyper than Hypo (although I have never gone above 20 afaik). The gunk at the bottom of my lungs is getting worse and my lung function is down, although the gunk does seem to be staying in the deep. So I asked for a course of IVs. I am not quite sure why, but that will not happen until Wednesday next week, but I am not in a rush.

While I was in having my port flushed today, I had my PDA fixed so I can continue the research trial.

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Fri, Sep 24 2004
Non-infection exacerbation

Since Friday, when I produced clear sputum for a time, my sputum has slowly degraded to a dark yellow/green colour. Nice. It has also got thicker. This has not been significantly affected by Prosperous Farmer, and the no.6 I took last night seemingly had no effect.The latter indicates that it unlikely to be an infection, although not impossible (if I am still suffering on Monday I will ask for IVs).

But the greatest problem is my diabetes. I did not notice at first, but it is very clear that instead of taking my old standard of 14/14 units I am needing 30/25 units morning and evening. It almost appears that I am producing none of my own insulin since my blood sugars seem to stay level if I do not take any artificial stuff.

I do not know what is driving my diabetes changes nor lung problems. Typically the former have only risen due to the latter and my blood sugars have fallen when taking spleen tonics. Did one of the herbs set off a reaction? Do I have a lung infection after all? Is it just one of those things? Is it significant that the weather dropped at virtually the same time?

I went swimming last night and it was very obvious that my upper lungs are both strong and clear. Normally I pant when I stop (hopefully between two lengths not each one) but this time there was very little of that. However, I could not find/breath into the depths of my lungs, the very place that the osteopath opened up on Monday. If I do have an infection - and I sceptical - it is keeping itself down.

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Thu, Sep 23 2004
New computer

The headaches I have had building this computer... Yes this entry is completely unrelated to CF, except for the energy drain it gave me worrying about it. Outlook Express (yes, that) has real problems transferring emails from one computer to another, then the free modem with motherboard did not work. I had to shuffle between computers old and new a lot, including registering both computers so I could read my ebooks. This is not to mention the seven months it took to find time to actually build thing.

But built it is, and boy is it fast. My six year-old computer was feeling the strain and crashed if I did too much graphics work. And Blog, the software I use to manage this thing, now does not freeze the computer for a minute while it loads. Now I just have to update two weeks worth of blog. Happy days!

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Mon, Sep 20 2004

This was mainly a follow up to the appointment three weeks ago: I was so tight after two trips out that he did not have time (and I did not have the energy) to finish the job. Not only that, but there was further tightening from coughing and my trip to Aberystwyth.

Indeed, the osteopath commented that I was better than last time, loosened my diaphragm and lower ribs and as always tried to take things a bit further. One of the results of this work is that my back is now loose enough to swim front crawl (and I guess my lungs are strong enough to do that as well).

The treatment opened up the one part of my lungs I could not reach with physio, and what yucky stuff was down there too. But at least I can clear it now.

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Fri, Sep 17 2004
Spleen tonic makes a tight chest

I started taking no.9 on Wednesday evening. However it was immediately clear that it tightened my chest, seemingly narrowing the airways. After waking up with wracking but nigh-useless coughs from irritation I stopped today and moved onto Prosperous Farmer.

Unusually the spleen work has not reduced my blood sugars.

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Tue, Sep 14 2004
Update after acupuncture

I was feeling better this morning anyway. My acupuncturist reckons that I still have no infection and that it is still a spleen problem. This fits with how everything is behaving. The acupuncture strengthened my spleen again, reducing most of the symptoms, including diabetes. He gave me a new tincture, no.9, as a focused spleen tonic.

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Sun, Sep 12 2004
Experiments with the PDA

While I was resting in Aberystwyth I had the pleasure of seeing what my PDA could and could not do (to my credit I did not break it - this time).

I did not experiment further with the camera since I left in my room for security (and because I forgot it the one night I thought I would show it off). The mobile phone aspect is not actually set up with any network, which is probably just as well. It does have a very nice calendar tool which, should I take to carrying one of these round, I would use. I didn't look at the mini-Word since I did not want big files cluttering things up: I used the tasks function instead since it was easy to use.

The gadgets I really liked were the voice recorder and text transcriber. The voice recorder ("Notes") not only records with incredible clarity, but seems to have full wav functions as well. If I still have it when I do my dissertation interviews next year it will be my primary recording device. The text transcriber reads handwriting. In all reality, it really is not very good at deciphering mine, especially my Ws, but it is great fun and you can customise it.

A nice toy really :)

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Coming back and diagnosis

How do you describe the confusion of going away without knowing what state your health is? When I left Bristol just over a week ago I had been told that I "certainly" had an infection, yet apart from the ugly colour of my sputum and its volume there were no other symptoms. Yet something was clearly up. In fact I think that I could honestly say I was in a state different to any other I have been in before.

Anyway, I kept some kind of diary while I was in Aberystwyth and here is how it ran:

  • Friday 3rd: was taking Prosperous Farmer
  • Saturday 4th: sputum thick, green and plentiful. It was also very wet. Took Pinellia.
  • Sunday 5th: the Pinellia and changing weather obviously worked because my sputum was lighter in both colour and volume. Still took Pinellia. The Sun started shining and did not let up until Friday.
  • Monday 6th: sputum was yellow and there was not very much of it. Took Lucid Channel.
  • Tuesday 7th: obviously changed tablets too early or did not do enough physio since I produced bucketloads of sputum, but at least the colour was good. Took Pinellia. After three days of continuous hot sunshine (even the students from the Caribbean were finding it hot) I severely regretted not bringing salt tablets. So I nicked a salt cellar and started swallowing salt, 4 times a day for the next 3 days.
  • Wednesday 8th: I felt much better for the salt. In the afternoon I rested and slept for 3-4 hours and felt -so- much better afterwards. I coughed up a load of ugly green stuff but then I could feel the bottom of my lungs again. Took Pinellia in the morning, and Lucid Channel at night.
  • Thursday 9th: sputum was thin and light, and my insulin dependency - previously running at 20 units morning and evening - dropped to 12-13. Took Lucid Channel.
  • Friday 10th: for the first time in a couple of weeks I was coughing up clear sputum, although most of it was yellow. Very tired though after working hard all week. Still coughing up lots of sputum, despite the colour. The weather also turned wet again. Took Lucid Channel.
  • Saturday 11th: very tired, unsurprising after a going to bed late after lots and lots of talking to the other students. Then a friend drove the 3.5 hour journey back to Bristol in practically one go. Ug. It was nice weather, but when I got home I coughed most of the afternoon and we were back to green stuff.

Sunday 12th (today): I started coughing at 6am, although I kept going back to sleep. I am still producing cartloads of sputum, although it is back to more of a yellow colour. Taking Pinellia today, just in case. The weather has turned back to heavy rain.

So. I still have no clue what is going on, although I suspect a few things might be involved:

  • Infection. I am currently 60/40 in favour of this diagnosis.
  • "Phlegm heat"
  • Reaction to dust/pollution/fungal infection.
  • A mixture of all these.

On Friday I felt that I was better than when I arrived, but most of that vanished when I got back to Bristol. I also am suffering from the usual question of whether I am still running on adrenalin or not; I am actually thinking the latter since I paced myself well, but I will not know for sure for a few days.

My plan at the moment is to sit tight and see if anything changes and if the acupuncturist has anything to say on Tuesday. I am keeping an eye on my lung function, although the nightly PDA lung functions are just as much a gauge of tiredness as any other lung function tests.


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Posted at:Mon, Jul 04 2005 11 PM