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

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Links

> 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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Tue, Apr 26 2005
Swimming - a bit better

I have been getting a little bit tired of late, almost falling asleep at work (actually I did yesterday, although it was after I ended and in the staff room, for 10 minutes). Some of it is dust, some of it bad weather, some of it is...?

Anyway, despite almost falling asleep at lunchtime today, by the time I left work I was almost feeling wide awake - noticeably the weather has improved. I managed to get to the swimming pool without too much difficulty and in fact swam 7 lengths. I drew two conclusions from the swimming:

  1. My breath control is not bad, but my swimming muscles have atrophied a little since I last swam properly before Christmas. However my endurance has increased.
  2. I was coughing up loads, leaping between thick but light yellow to dark green.

I am taking no.11 as I type to bring up whatever is left, and a couple of no. 10 to try and get rid of whatever heat is there.


by Picks-at-Flies  Comments

Thu, Apr 21 2005
Long time no blog

Last Tuesday I saw my acupuncturist and presented my symptoms (top lungs clear, bottom lungs thick, diabetes slightly high but stable) and he diagnosed stubborn sputum again. The solution? What I had been taking myself the previous couple of nights - No.11 (to tackle the deep sputum, the bottom lung) and No. 9 (to bring it up from half way, the top lung).

Combined with the acupuncture, this generated huge amounts of sputum, although the colour was fairly good after the first few bits. It looked as if the dark stuff was dark because it have been there a long time, not because there was a strong infection.

Unfortunately, this put a strain on my diaphragm, so I stopped taking the herbs after a few days, and continued Tuesday. So yesterday, once more, I brought up huge amounts (it went in the bin and it ended up looking like a bucket :( ). This time the colour -was- worse, and there were bits which did taste thick and nasty. And my diabetes is a bit worse. So after this cycle I will take a few lung and spleen tonics to try and fix those problems. I took some more no11/9 last night but nothing much seems to have changed this morning - perhaps I got it all up yesterday?

Meanwhile, I went swimming last week and only managed 5 lengths. It seems the muscles that I have worked on in the gym really are not the same muscles used for swimming so I have resolved to go swimming once a week, instead of one gym session. It did not help that I got a stitch after two lengths (sign of a tight diaphragm) - I have been doing my best to keep my diaphragm relaxed, but somewhat unsuccessfully.


by Picks-at-Flies  Comments

Wed, Apr 06 2005
Wow! Getting better

I have been playing with different herbs for the a couple of weeks, with only partial success. I have been focusing on the tablets (because of tiredness); on no.10 for fear of an infection; and on tinctures 9 & 11 because I forgot about the earlier ones! Unfortunately this was a mistake, because once the worst was over, no.3 was the one to go for, clearing away all the sputum. Combined with the exercise up in the gym opening up the airways, the future looks bright.

To clarify the last entry, it is apparent that both the weather and the spare carpets in my room were causes of thick sputum. Indeed the day after the carpets left my room, everything - including my nose - thinned out again. And on the day the weather worsened but my lungs did not I rejoiced for I was getting better! Finally, DNAse, as I have suspected in the past, did not really help: I did not take any last night, just a healthy quantity of no.3 and my sputum this morning was thinner than ever (even with only 5 hours sleep...)


by Picks-at-Flies  Comments

Posted at:Mon, Jul 04 2005 11 PM