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

Blog software

WWW This blog
Tue, Aug 29 2006
And the antibiotics make things worse

I finished the antibiotics on Thursday and this is the first day that I feel human again. What gives? Once more antibiotics show that they as much a hindrance as a help. In my blowing test last Tuesday, my results were barely above what they were the week before. I am still going hyper while taking almost double the level of insulin I took 6 months ago. I am producing thick, dark sputum and I have been very tired.

So the questions:

  • Do I actually have an infection that the oral antibiotics failed to stop? They symptoms are there, but it makes little sense.
  • Did the orals actually hit my immune system so hard that an infection developed?
  • Is it something else completely?
  • This insulin cartridge went on holiday with us. How much was it affected by the heat while being transported (and thus weakened)?


I cannot help wondering if taking no.14, as recommended to take me forward since it contains tonics, made things worse. I am certainly wondering if I am over-dry (actually, I know I am) - and what caused it / how I fix it. I have been mostly taking no.15, which ought to do something. I will try no.11 this afternoon, to see if this anti-static chi formula gets something moving. I will also try to get more sleep (a bit of a problem with high blood sugars - they make me sluggish and so hard to get into bed.

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Thu, Aug 17 2006
A week into antibiotics

I am knackered - but not as much as I have been. Azithromycin really seems to hit me hard, and my body has also wanted to regularly wake up after just seven hours sleep. Yesterday I managed to get back to sleep and wake at 11.30, and I woke at 10.15 this morning so I am feeling quite a bit better.

Actually, apart from my poor lungs, my health is quite good. I did fifteen minutes straight on a cross-trainer on Monday night followed by a full (if comparatively gentle) round on the weights machines. Not only am I still fit (I almost got to 2km - yay!), I seem to have some muscles still. One of my many appointments on Tuesday was to the Osteopath who also could find few specific problems.

My lung function on Tuesday <em>was</em> better - an FEV1 of 3.5 - but not as good as I might hope. Particularly galling was a bit of information I picked up recently and was confirmed on Tuesday - the lung walls of CF patients get thicker, restricting the breathing without any particular infection. The results from the software used for this research suggests I do have thicker-than normal lung walls, but without talking to the doctors I have no confirmation that this is particularly significant. However, if it means what I think it means then it is the explanation of my recent lung deteriation and <strong>nobody told me about it</strong> (I got the information from the <a href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169">CF forums</a>).

So not only might the antibiotics have been completely unnecessary (still a maybe, sadly), but they also do not work alone. As an experiment, I did not take any herbs from Monday to Saturday (in fairness, without antibiotics I was planning to stay off them for a few days). Three capsules of no. 15 and I lose the dry cough and I start bringing up dark sputum from the depths of my lungs where it has been stuck through dryness. How do people manage without herbs?

Unfortunately, my tiredness has mostly impaired my ability to write essays, and even to do Rage stuff (although, because it comes in small chunks, I have been able to do a reasonable amount of that). I hope I have enough energy to do the shuttle test scheduled for next week. The good news is that my port flush was done Tuesday as well which saved time. The bad news is that trying to do two nebulisers a day when you come home from work virtually asleep already is not only difficult but has contributed to me going to bed even later than I would otherwise. *sigh*

Postscript: Just been to Acupuncture. He thinks I am the best he has ever seen me! Unfortunately, if my hypothesis about the lung thickening turns out to be correct, he does not think there is much he can do about it. The plan is to move back to no. 14 which has more kidney tonics

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Thu, Aug 10 2006
The Summer is over?

This has been a busy month. Under the full effects of the Sun, I was buried under activity. I almost finished one module's essays, but spent more of my time doing work on Rage (the card game for which we are producing a new fan set of cards) - in the peak of playtesting I was getting new lists of things to change on the database every day. And then came the family holiday.

Unfortunately, the holiday was delayed since my mum picked up a bug - and then once we got to the campsite, my father picked it up too. Luckily it was only just over two hours away and I was well enough to do over half the driving. Because of the illness and the incredible heat we only did a few proper trips (I did a lot of the driving again). It was very good rest though since I was away from the computer, with just rest, reading and a warm swimming pool. Actually, two pools - the outside pool was normally so cold that it contracted all my muscles making my breathing difficult. Luckily the inside one was beautiful and, although it was about a quarter of the length of my normal pool, I did many lengths and spent several half hour sessions in there. I would have liked to stay even longer, but time ran out.

On Saturday, still recovering from the long drive and being hit by our overly warm house all day, I started digging into the inevitable build up of Rage tasks - and ended at 5am. This earned me a stern talking to from each member of my family in turn. Still recovering from all this, I went to my annual review on Monday (continued on Tuesday -3 hours just seems to go nowhere). Usual warning from the diabetes team about checking my blood sugars before driving (oops - I may not be concerned about the five minute drive to work, but I should have checked them before the long motorway drives). My weight is still over ideal (73.3kg), and my X-Ray revealed, joy of joys, that my port catheter is still in place and not shooting up to my neck.

However, my lung function, not entirely surprisingly, was down (again or still?) (2.05/4.45). According to the head consultant, Itraconazole, the antifungicide I have been seeking, is one of the most horrible drugs in existence. However, talking with the CF fellow, we decided to see if oral antibiotics restored my lung function, and from there we might be able to work out how to use oral antibiotics to keep things in check. It was pointed out however that a certain laxness about using my Colmycin nebuliser (it was getting to be used just a couple of times a week due to the inconvenient arrangement of the setup in my bedroom) was probably causing more problems than not taking - probably causing resistant pseudomonas to grow. *sigh*. To that end, I was also given Tobi again (pre-diluted Tobramycin nebuliser), although warned I was unlikely to get it regularly since it was so expensive. I wonder how it compares in price to DNAse?

So now I am on antibiotics and I suspect that my current tiredness is due to the hit they gave me - however, I will slowly recover from that. I also had a sore throat and irritating unproductive cough yesterday, which are almost certainly symptoms of the bug my parents had. I am hoping that early nights and lots of rest will pull me through. Herbs - I have been taking lots of number 15, and indeed I suspect it allowed me to enjoy sunshine more than I have for several years (sadly I returned more red than brown). I have also used occasional does of no.11 to bring up sputum although sometimes it did not hit the mark. It will be a blow if the antibiotics do fix my lung function where the herbs and acupuncture have not.

Finally, it was noted that I have not had IVs due to "exacerbations" for over a year, although I had IVs during the port op. in October, and oral antibiotics over the port op. in April.

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Posted at:Sat, Sep 22 2007 12 AM