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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Mon, Apr 26 2004

I saw the acupuncturist on Friday. Like the Osteopath he thought the dizzyness was in my neck. So I had some very strong needles in the back of my neck and elsewhere - it is not every time that he draws blood. Friday I felt so much better I went for a drink, Saturday I was very tired and had two aches in the back of my head (where the needles went) and Sunday I was feeling much better.

It does look like that the osteopathy and acupuncture did their work well (eventually) - at least they diagnosed the problem. However, the steroids and oral antibiotics seem to be doing the trick on my lungs, and the increased sputum production seems to be receding at long last.

by Picks-at-Flies  Comments

Tue, Apr 20 2004
Quick hospital appt

Yesterday I went to see the Osteopath. My lungs were really tight, and my neck even tighter, but he straightened them out and allowed air to seep behind the blockage. He also hoped he might have sorted the dizzy/unbalanced spells that started Saturday. Unfortunately this morning my lungs were giving out thick stuff of an ugly colour, and I spent large parts of the morning hardly functioning due to dizzyness. So I phoned up the hospital and was given an appointment.

My lung function was down - not seriously but enough to worry me that it might be heading lower. My blood sugars... well they are not being great (7-10 not 4-7) but do not seem to be causing me real problems. My oxygen sats were fine at 95 but my pulse went from 120 sitting to 220 after blowing my lungs out. The real revelation was my low blood pressure - and the lower differential between the systolic and the other one.

I have been given another 2 week course of oral Antibiotics (as usual, Azithromycin and Ciprofloxapen) and my steroids have been bumped up to 30.

I did some research into low blood pressure at work later this afternoon. It would appear that it is typically a symptom of some other effect, but the only one that rang true was dehydration - I have been drinking loads of water ever since I came back from my trip to Holland last week. However, I can find on specific cause for the dehydration other than the heat that has been on my lungs recently - but why has that got worse?

Blood results to follow.

by Picks-at-Flies  Comments

Thu, Apr 08 2004
Acupuncture: more of the same

Just as last time, there is phlegm caused by heat and not the other way round. Our thinking remains that it is a reaction to the anaesthetic. While the plenteous goo coming up from my lungs and my need for lots of sleep is causing me concern, it looks as if I am not actually getting worse. Prescription: keep taking the "Magic Bullets" to reduce heat and phlegm.

by Picks-at-Flies  Comments

Wed, Apr 07 2004
Port flush

I had my first port flush today. Despite my fears that the port had packed up, it flushed beautifully.

The bit of string which had been annoying me (and which I had pulled out a millimeter) was the end of a suture inside the entry scar. It is meant to dissolve in body fluids, but it seems that the knot has risen up and is causing a bump next to the port. At least I know what it is now.

by Picks-at-Flies  Comments

Sun, Apr 04 2004
First day of blogging

I keep forgetting what I have done, or when I did it. This is a record for me, which I give to anyone who cares to read it. I want to keep it primarily on theme, so hit me if I start to waffle. It may not include every phone call to the hospital, but should include the major stuff.

My lungs are still producing darker stuff among the clearer bits, but the sheer quantity of sputum being produced seems to have receded. I have stopped taking the Magic Bullet since it seems to have stopped being effective, and I am waiting more diagnosis from the acupuncurist and the sputum sample I gave last week.

by Me  Comments

Thu, Apr 01 2004
Osteopath: tight on the right

Two main comments from this session. First the muscles on the right hand side of my chest and neck were very tight. So tight in fact that the work done left me extremely tired for a day and a bit. But it seemed to work since I had more energy after that.

Secondly, while I was waving words like subclavial around, the osteopath had a clear picture of where the port line went: between two chest muscles and into the subclavial vein. Since it went between the muscles and did not cut them he figured there was little or no internal damage and should present no problems in that regard.


by Me  Comments

Posted at:Mon, Jul 04 2005 11 PM