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
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January 2006

December 2005
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April 2005
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December 2004
November 2004
October 2004
September 2004
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July 2004
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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, Nov 28 2004
10 days after IVs

I woke up coughing up small but solid plugs this morning, about 5.30. The most likely reason is ABPA, but tiredness, weather, spleen deficiency and not taking DNAse for the last week probably plays a significant part here. I am incredibly tired for some reason - it just won't go away. Part of that is that I keep doing things, but I worry that my lungs are doing bad things again. I have been taking Pinellia, and yesterday I took some no.6. However I think it was the Prosperous Farmer which helped most, hence my thinking about spleen deficiency. It has also reduced my blood sugar levels again.

Ug. I am off to bed.

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Sun, Nov 21 2004
Quick and tired update

I have been tired today, for no reason I can think of. It may just be a couple of late nights playing havoc, and moving stuff. Also I have a very painful neck; I have had this before which I think I fixed by going to the Osteopath. I hope this one is not that bad, but arnica which my parents swear by has not done a thing.

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Thu, Nov 18 2004
The day after IVs

First off, on the practical front, I pulled out the needle from my port yesterday morning. If you do it yourself, there is almost nothing to feel, which is disconcerting, except for the port moving once the needle is out, which is even more disconcerting. I am tired from lack of sleep, but at least I feel clean again after a long bath this morning. After all this, I only missed the two days at the beginning of the IVs.

I started taking Prosperous Farmer on Tuesday night, and since then my diabetes has slowly dropped, and it dropped again when the antibiotics stopped. I took 15 this morning and went mildly hypo at work. I used the opportunity to eat another sliver of Galaxy. Hmmmm. So it looks like that is returning to sensible, if not good, levels.

I saw the acupuncturist this evening, and he did some further work on my lungs, spleen and ... kidney. Just as when the lungs cleared up the spleen problems became visible, so it seems he could now see beyond the spleen to the kidney, the center of everything in the body. He agreed that there were some residual bits of sputum stuck at the back of the lungs. They are a known in Chinese medicine (although I have forgotten their official name) and only two herbs treat it, so in a few months time he may be able to make a tincture from them!

He did, however, agree that heat had been slowly building in my lungs. We looked back at his notes from when I started (actually in June 2001), and I was having IVs every 2-3 months. What a difference! For the moment I will be taking spleen tonics - Prosperous Farmer or no.3. For the future, he has revised no.6 to be stronger, specifically targeting Fire Poison, so we may be able to prevent even more antibiotic treatment. Also we think no.9, the diabetes spleen tonic, is not right although I think we disagree on how it could be improved.

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Mon, Nov 15 2004
IVs: Final stretch

I am in that disturbing state of IVs that I always tend to hit about this time: continuously tired. To make things worse, this time round I do not seem to be able to get extra sleep in the day. On Saturday it was because I was hyper all afternoon (which I did not realise until afterwards) - not badly, but enough to keep me awake. On Sunday I pushed myself a little to go to two services and a choir rehearsal, but it did not seem to make any difference. In both cases I went to bed about 1.30am, after my last dose of IVs ran late.

The other aspect about this time of IVs is that the sputum is returning. And it is still much the same colour as before! I am no longer worried by this phenomenon, but it is still disturbing. Some of the herbs I have should have some impact on this (Lucid Channel I think, but when I am this tired my memory is not so hot).

Despite taking a few doses of no.9, my diabetes is still playing up. It might be because I am dry and dehydrated due to the IVs, but I suspect not. I am seeing my acupuncturist on Thursday and I will see what he can do.

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Thu, Nov 11 2004
Lack of updates

Apologies for not updating very much. Partly it is the IVs making me tired, partly just not getting round to it. But then I guess updating once or twice a week is enough - that is still almost 100 entries a year. If you want more frequent updates, I am always logged into #PWCFChat during work, every afternoon Monday-Friday (GMT). You may need to hang around for a while though before I notice you - I am, after all, working.

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IVs: half way through

It did not take very long to make me feel better. This ties in with the assumption that it was an acute exacerbation, not prolonged. However, after a sleep yesterday evening physio showed that the contents of my lungs while much reduced were still a yellowish-grey colour. This is one of the so-called symptoms of pseudomonas, and while it be conceived as a sign that the IVs were not doing their job I believe it is more that there is something going on in my lungs unaffected by the antibiotics. The most mundane of these is that it is caused by those "mostly-benign" resistant strains of pseudomonas, other solutions being related to heat and damp and other Chinese terms.

Despite taking Wednesday and Thursday off last week, I have not taken one since. I slept for 4 hours during the day on Sunday, and although that meant I did nothing else that day it did seem to restore my balance of sleep. I have started to dance to the radio again and my concentration has increased to the level that I wrote up my top 10 ways of staying healthy (coming soon). I walked down and up from the university to the BRI with barely a stop for breath (somewhat impressive even on a good day) yesterday, although I did sleep for a few hours between tea and IVs.

The last thing to come back seems to have been my diabetes. However, I took some no.9 yesterday and, following chocolate without problem in the afternoon, I only took 10 units of insulin with my tea of marmite, salami and jam (not together!). My blood sugars peaked at 14 - not bad at all. It also had the side-effect of removing some of the dryness, which improved my physio results (see above).

I did wonder for a moment if, with such speedy recovery, IVs had been necessary, but the energy difference makes me think Yes, they were.

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Thu, Nov 04 2004
The pump

Well, aside from it not having an Off switch, other than removing the battery it works fine. It whirrs every second, but you get used to that, and it beeps if it has a problem - but I found remembering to unclamp stopped such problems!

It took a bit longer this evening, probably due to tiredness. And my port feels heavy, but I am too tired to think about it. I have taken some no.6 because it dries my sputum enough that I don't wake coughing in the night. Hopefully it does not dry it too much.

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Wed, Nov 03 2004
And so it comes to this - IVs

Over the weekend it became apparent that my lungs were very bad. On Monday I asked for IVs and I started them this morning.

"I thought you said you didn't need them?" Well, I thought I did not. To be precise, every time I have been ill recently, I have managed to solve the problem some other way. However, it got to the stage where although other treatments were holding back the problem, the benefits were not sustaining. Remember also that it was only a few weeks ago that I was well enough to start experimenting with my diabetes.

More long term, this is the first IVs I have required since I started this blog, so hopefully I can use these conditions as a reference.

So what decided me? I started taking large amounts of no.6 on Friday / Saturday. Although it stopped much of the coughing in the middle of the night, it did not stop all of it, and that is not a good sign. And by Saturday / Sunday I was too tired to concentrate - lack of energy being the major symptom that has been missing until now.

When I went in on Monday, my lungs were almost choking and my lung function was 2.7 / 5.45 - the lowest it has been for a ages. Actually, before I cleared a block my FEV1 was 2.5. So I was quite embarrassed when I saw the doctor. However, it was my favourite doctor (she is very good at letting me self-diagnose then giving more information to help me) said: if they were treating me aggressively they would have had me in when they suggested it about a month ago; but I tend to wait to see if my other treatments do any good, and in all fairness they often do. So, no embarrassment really.

I did leave it a bit late though, although my chest did fill up quite quickly in the last stages, and I am absolutely bushed. I will take a bit more than my estimated two days off work I think this time, perhaps four. I took Monday off after my appointment, and slept, but yesterday I had tons of energy, and even read some difficult masters work while my van was serviced. So even now, things are not cut and dry.

Btw, I am taking Tobramycin and Meropenem, once and thrice a day respectively. It looks like I get to use a syringe pump for the Tobramycin since we are a bit uncertain that a drip would flow at sensible speed.

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Posted at:Mon, Jul 04 2005 11 PM