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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Tue, May 24 2005
Room clear

We cleaned the new house (well, my sister got rid of the worst of the dust) on Saturday, and I moved the piles from my room up there on Sunday, and did the lighter cleaning. Between the antibiotics and the dust I was quite bad by then, but things have improved since. In some ways, my body is now more used to the antibiotics and can cope better, but the lack of energy is still there. Worse still, my tiredness got me addicted into computer games again! It is a good thing that I started moving my stuff early because I just lost almost two weeks of sorting.

Still, I have managed to stay up late and get up early for a few nights, although that is finally catching up with me. I have reduced my steroids to more normal levels (15 alternate days, from 25 daily a couple of weeks ago, which has reduced my appetite from 5 large bowls of cereal then lunch to 4 then most of lunch. And I am increasing the load in my gym sessions - I have added 10-20 kg over the last couple of months, and increased the level of the bike and crosstrainer by 2-3 levels. 3 minutes on the rower is still the same though.

Back to sorting then. Some very dusty books need packing.

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Mon, May 16 2005
A week on antibiotics - ug.

After the results of last Tuesday, two good things have developed and one ugly. The good is that my lungs really did improve - no more uncontrolled coughing (well, not much), and thinner and better sputum. The second is that my Dad cleaned my room really well for the first time in ages, following a late night session when I finally emptied and sorted the contents of my old desk. The ugly development is that taking two antibiotics has really hit me and I am more tired than usual. Not dramatically, but it has hit my motivation and I have to push myself to attempt something useful (even more than usual). Luckily the Azithromycin is only short-term - 3 months!

More good news - going to the gym on Thursday was a huge success, achieving a full session without any difficulty. Not too unexpected since even the shuttle test showed I was fit, but satisfying nevertheless. And my room is now back to being filthy again since I have retrieved five large boxes of my stuff from the attic. It was clearly noticeable when I went to sleep last night that the dust from them affected my lungs. Luckily it did not take long to clean them this morning (a quick vacuum did the trick), and I only have one more box to sort. Then I will have two van-loads of stuff to take to the new house, and my room will be done, mostly, until the big push. I keep finding more stuff though, tucked into corners!

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Wed, May 11 2005
Hospital callback

I went in on Monday for a shuttle test. Between my sleeping in and the physio being busy it started late but we had just enough time to finish it, and I am very glad we did. The results showed two important factors: 1) I was much much fitter - my pulse and sats* returned to normal very quickly; 2) my lungs were not coping very well with prolonged exercise. I had to stop early, on round 11 not round 15 (out of 16 I think). This was obviously cause for concern, so we arranged an appointment the next day.

Even last week I was saying my lungs don't seem to stop producing. The same is true this week, but the sputum quickly became thicker and greener. I was becoming more tired (causing late nights and late mornings), and exercise was hard. I was becoming breathless much more easily, although my limits were still high. Finally, my diabetes is flaring slightly. If there is any good news, it is that my sinus problems seem to be going down. Oh, and I am kilo heavier (!).

The obvious cause of the problem is dust, although it is possible my pollen allergies have kicked in a little with spring in full bloom. I saw the consultant himself today, plus some extra bodies, who generally agreed with my diagnosis. He was more than happy for me to start Azithromycin (AZ), the wonder "antibiotic" with its inexplicable benefits to the lungs. We also were handed my latest sputum results which showed the first growth of Staphylococcus in a long time; I put forward my theory about Flucloxacillin (the main anti-Staph antibiotic) - that it contained similar inexplicable properties to AZ and that my recent downwards turn was a result of stopping taking it - and he agreed it is a viable theory, although like me he has not proof.

For the first time in a long time, my home pharmacy has increased, with Fluclox back, and AZ in. My steroids I put up myself to 25 mg from 10 every other day. And after some harsh reminders from the physios (but nice harsh reminders!) I am doing proper sessions of Autogenic Drainage (AD - apparently it means "self-physio"). My aim is to actually hoover and clean my room this week** to get rid of the dust.

It is one day later, and already I feel better. Perhaps it is the antibiotics I started last night, the extra steroids fighting the reaction - or simply spending all afternoon in a dust-free environment (work is extra dusty due to the air conditioning failing - and the cleaners not dusting anything vaguely electrical in an area full of computers). Either way, more tidying less sorting for the new house this week.

Finally, I talked to the other "bodies" in the room. One was promoting a trial of Hydro-acoustic therapy, a nice idea of using using sound waves through water to pummel sputum. They have nice expensive kit installed and are even promising remuneration. My only two problems with the study are: I am not sure how feasible it will be for someone really ill; more personally, can I afford the 12 hours required over 3 weeks? Luckily there is some flexibility over time of day and which 3 weeks you use, so I will discuss it with my parents and see if we can fit it in.

The other bodies were students (*hello*) who I managed explain my idea of equal doctor/patient relationships to and promoted this blog to. I love teaching students! :)

* Oxygen saturation - percentage of recommended Oxygen levels in blood. Anything below 94/5 is off; anything below 90 is somewhat worrying.

** It was meant to me yesterday, but a 75 minute wait in pharmacy for my drugs put pay to that, especially since I had a game in the evening. It won't be today either, since I have been given concert tickets. Yay!

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Thu, May 05 2005

This was a very good treatment. Stubborn phlegm is still a problem, and we discussed making a custom formula for it. However, we concluded in the end that sticking to a mix of nos. 9 and 11 was fine.

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Tue, May 03 2005
2 Month checkup

Yesterday in gym for only the second time I actually felt like walking the 3 flights of stairs to the men's changing rooms rather than taking the lift. This was backed up by my lung function today, which if not fantastic (I aim for an FEV1 of 3.3) was very much an improvement. FEV1 of 2.9 (from 2.5) and FVC of 5.75 (from about 4.9). The FVC is one of my best ever. My weight at 69.1 is very good if a couple of kilos down. Unfortunately I did not get my favourite doctor but the latest junior registrar. Typically he was taken aback by my self-diagnosing, highly confident and slightly condescending approach*. I pointed out to him that my results, although better, were still not good and please could I have the option of starting Azithromycin if I wished. He was naturally skeptical of this self-prescription** but eventually promised to speak to the consultant and let me know by phone***.

* I try not to be condescending, but it is hard not to be with some junior registrars. They are not long out of medical school and typically rely on hard statements like, "If you have symptom X, do Y", which in the world of long term, personalised conditions is very restrictive.Certainly, anything out of normal baffles them and I always not normal. I have come across exceptional junior registrars who actually listen and adapt to the patient; they deserve medals.

** I am waiting for the day I am given a license to prescribe my own medication!

*** This never happened. I found out later that a letter was sent on 5th May, but it had not arrived by 11th. It is possible it was never CCed to me.

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Posted at:Mon, Jul 04 2005 11 PM