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.

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Sun, Aug 28 2005
Annoying weak

Once again, I have the symptoms of dryness, and tightness. I have been taking no.9 somewhat, but it dries almost as much as it moistens - it was carefully balanced like that, which is no use in the new, dryer house.

It has been tough, since I am having troubles eating my normal amount of food, and going to the gym / swimming has been near impossible. The best solution was the long walk I took to work yesterday, up and down hill as happens in Bristol. I have been feeling tight and full.

It hasn't helped that I have been having late nights (partly hooked on the computer, partly trying to organise a tournament with people in a vastly different time zone, and partly worry about the upcoming surgery.

In other news, I have been in contact about my Masters, currently on hiatus - about how taking time out to recover from the anaesthetic might affect me. I have exactly two years, of which 18 months is dissertation time. This leaves 6 months for 3 modules... plus recovery time. Luckily I have started two of the modules, although they are not without problems. The third one is literature research which I would hope I am good at. So there is a chance, but it depends somewhat how things go with the anaesthetic.

The update on the surgery is that the surgeon won't return until 5th September. I haven't felt any blood surges (except occasional pychosommatic ones when I think about it) so I have no problem waiting - luckily! Because the op. is pretty straightforward as they go, I anticipate being whisked into hospital that week, and slotted in between other operations.

I have also managed to get Broadband to work and stay working. My mother's computer no longer needs work. I really have little excuse not to do Master's work now!

That's about it. I have finished my game, I am off to bed!

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Wed, Aug 17 2005
Doing well

This is the conclusion, just a little dry (according to my acupuncturist).

I finally made it to the gym on Monday. Following recommendations from the physio I did 20 minutes on the cross-trainer (on level 10, so not too tough) and that was not too bad at all. I will try for a full 30 minutes next time. Then I did 2 minutes on the rowing machine, again not too bad - but I am aware I need to increase things gradually. Since heavy exercise is my worst area at the moment, I hope to increase this to 10 minutes. Finally, a round of weights with just minor increases. That did leave me feeling tired but only slightly - I did not collapse like sometimes!

Last night I saw the acupuncturist. I thought I was a little hot, but rather I am just slightly dry which is a different problem. I was described a rather bizarre image of the kidney being heated by yang chi, sending the "water" of yin chi as vapour to moisten the lungs before being cooled and sent back to the kidney. Anyway, the key is certain kidney tonics, and tonics for the spleen and lungs. No.9 is almost perfect, except slightly too drying maybe, so I am experimenting. If I continue to have "random coughs" or they get worse, then a more specific formulae may be needed.

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Wed, Aug 10 2005
Stand-in Osteopath

I was due to see my normal Osteopath Monday, then realised I was double-booked and made an appointment with someone I saw once before, two years ago. It is a bit like being seen by a locum teacher, in that no matter how much they teach you, they will almost certainly not be able to continue the forwards movement set by the normal teacher.

Even before I got there, my body was sorting itself out. Since the holiday, it has been slowly relaxing of its own accord, and my physio has been slowly clearing the fluff and getting out the deep gruesome stuff that built up in my recent bad spell. A 25 minute walk down stretched me out some more (and made me promise myself to walk more often).

The Osteopath sped all this up. Even as I walked back, I was moving deep stuff, and in the course of the day and last night I shifted even more (getting fouler as it goes). I haven't managed to sit down for a decent physio today, but I hope to get one in before bed (or tomorrow morning, my first without things to do).

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The Perilous Port

My annual review was on Monday. In Bristol, this means seeing all parts of the team, as opposed to just some, and answering questions for the whole year as well as the last month or three. This is useful for the same reason as this blog - it gives you an overview over time.

We started with bloods and a port flush. The bloods flowed without problem, even keen to leave my body - I will talk about the port later. Then the physio - told to keep doing exercise, aim for 20 minutes on the bike, and not to block my throat when I hold my breath. And the dietician - I did the food diary from memory while I was waiting - yes I care that much about it! - who was happy and, unusually for dietitians, not patronising.

Breathing tests were done in the consulting room since virtually all the normal staff were away, and they were not good (2.85/5.2), but what I expected after the move and lack of exercise. This is definitely down from previous years, but exercise will get some of that lung function back.

The big problem was my port. It wouldn't flush, so when we got my x-rays back, we took a look. You can follow the white line of the port tubing on the x-ray as it loops around a rib, back towards the neck up, around and down... except it wasn't going down, but straight up the jugular. Theoretically, it might flush there but for some reason (hidden kink, internal clotting or more likely against the wall of the jugular) it is not.

More importantly, nobody there liked the idea of a canular in the jugular. Apart from simple obstruction, if it clots there bad things happen. Nobody wanted to spell it out, and it was left to our imaginations - and now yours. I have been given the warning signs, and there is another vein opposite which will cope in an emergency. (*shudder* ooh, it gives me the creeps just writing this stuff.)

I learned this morning that the relevant surgeon is away on annual leave for another three weeks (I am not complaining - the less stressed the surgeon the better for the patients!), and the conclusion was that my port has last this long in this position, it can last a while longer. So another operation in about three weeks.

The operation itself is minor, by standards of heart surgery. Either the tubing or the whole port is removed and replaced (hopefully just the tubing, but I am not too worried about that, scars aside). The real problem is that last time - only 18 months ago - it took me 3 months to recover from the anaesthetic. In my favour, I know what to expect, I am fitter and I have a better handle on Chinese herbs. However, I have had to let Aberystwyth know that I may have to extend my time off the Masters.

Yes. This one rather got to me.

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Back from holiday

Apologies for the delay - we actually got back on Saturday, but I have been so busy or tired that this is the first day I have had time and energy to write it up. Wales was... cloudy. I will not saying miserable, but the gloomy weather did mean that we - me especially - did much less exercise than we would have liked, with obvious consequences for my fitness. Still it was two weeks of fragrant relaxation, and I managed to replenish my stores of energy, heavily depleted by the move.

Not only that, but as has happened before, my lungs turn out indeed to have been excessively dry, causing the pseudomonas-like symptoms of thick sputum and high blood sugars. Once I was taking the right herbs (anti-heat or Prosperous Farmer as it happens) I went from needing 40 units of insulin to half that virtually overnight - I was running almost continuously hypo for three days.

So I am back and feeling good, although I need to get down the gym when I have time.

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Posted at:Fri, Sep 09 2005 6 AM