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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June 2006
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April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
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April 2005
March 2005
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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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Sat, Oct 30 2004
Big bad week

"I am still not sure what is going on here..." How true that statement was. On Tuesday morning my diaphragm more or less seized up. Walking to and from work Monday and Tuesday helped, but I called for reinforcements and arranged appointments to see the Osteopath and Acupuncturist Wednesday and Thursday respectively. Both I think put themselves out for me, the benefits of long-term care and built-up trust.

Tuesday night I went to bed at 9pm, and although I coughed in the night (becoming very common at the moment, sadly) it all seem to come together and by the time I had my Osteopath appointment, I was feeling better. However, it tired me so much that I had to take a day off work, which also helped. And indeed my diaphragm was extremely tight, so tight that it was not all fixed in one session.

A tight diaphragm basically restricts the lungs and tightens everything below it. Since many of your major organs (pancreas, liver, intestines etc) dwell there, that is a lot of knock-on impairment. You cannot eat as much, for one, since your sputum-filled lungs are vying for the same space. What causes it? Well, among other things coughing! Also, merely have lots of sputum in the bottom of your lungs will cause you your lower ribs and diaphragm to seize up (and therefore freeing up those areas will help you get rid of the gunk).

Onto Thursday and the Acupuncture. Lots of heat, not so much phlegm was the diagnosis. I was not at first worried about his concern about the heat, despite the fact that he drained the heat from me more rigourously than he has in a long time. It requires Heat and Phlegm to produce Phlegm Heat, and I was missing one. However in the couple of days since then, the phlegm seems to have reemerged, so I am taking no. 6 as he recommended - a strong ward against a possible true infection. I am out of no.2, the other he recommended, so took no.3 instead for a few days, but I will also need more no.6 since that is finally running short - a testament to how little I have needed it recently.

My steroids are increased to 25 daily, for fear for ABPA or similar. I have been unable to take Colomycin recently since I ran out of filters for that nebuliser system. I still don't know if I will need IVs - it is definately on my list of options and I will be watching my health carefully for the next week. And having lots and lots of early nights.

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Mon, Oct 25 2004

Yesterday: woke up at 8.00, ran a bath, turned bath off, went back to sleep for 4 hours. Woke up coughing up half a tub. On conclusion, drinking lots of water, thick sputum and increasing diabetes... sounds like too much dryness again so another small careful dose of no.9. It always makes me worried taking something which could bring on more sputum, and behold this morning I woke up coughing. And it was raining heavily outside so I did not get back to sleep.

I am still not sure what is going on here...

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Thu, Oct 21 2004
Last week at work...

Here is something I forgot to mention. Last Thursday I worked a whole day at work on four hours sleep. The lack of sleep was coincidental and down to a badly timed cough. I was fine until 5pm when I suddenly collapsed in exhaustion. But it did prove to me that I -can- manage longer hours, albeit not eight hours every day. I currently work 20 hours per week, which was perfect when I first started here three years ago. My estimate is that I could push this up to 25 hours now, although this won't be an issue until I actually start another job.

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Swimming - lots of it

I finally got down to the swimming pool - twice. The first time I noticed that I did not have full lung capacity: I could hardly swim half a length underwater, I could not feel my whole lungs and in fact I was stopping after every length to catch my breath. However, I did notice an improvement afterwards and resolved to go again.

So I went again last night. I only managed six lengths to my previous eight (it is at least a 33m pool to make me feel better), but that was as much due to lack of time as anything else. I would like to get fitter again though, and it is mainly in my lungs I think. The good news is that when I tested my lung function (when I woke at 3.30 this morning) my peak flow was 710 and my FEV1 a staggering 330. I doubt that the small machine I have with the PDA for the study is accurate, but it compares well to my recent 270s.

My main reason for not going has been that I do my main Masters reading after work, the only time I can realistically get down the swimming pool when it is open to the public. However, since I wasn't really doing that much anyway, and I hoped that the energy gained would be available for reading in the morning. Moreover, since I have paid a significant amount for access to the pool I might as well use it! I am aiming for 2-3 nights a week (Monday, Wednesday then either Tuesday or Friday). I will keep you posted!

Next, I tested my blood sugars when I got home from the pool on Tuesday. 3.1. That explains some of my aggressive manoevers. Lucky I have good enough reactions at the wheel to pull it off and not scare the other drivers. But that is the first time I have driven while hypo and I hope now that I know what I am looking for.

It also means that I need even less insulin. I tried 7 in the morning yesterday and went slightly hypo at work, and will head down to 4 this morning. Since I took even more of the herbs (Lucid Channel, also to clear my lungs) last night, and will again it is possible that I will take 0 insulin for the odd dose or two, but that is something that I will need to watch, especially once I come off the Lucid Channel again.

Finally, I removed the game - Heroes IV - from my desktop so hopefully that will put an end to that.

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Mon, Oct 18 2004
Even further down

My insulin intake is now about 9-11 units morning and evening. I need to work on getting a better idea exactly where it is - except that it keeps changing still. I have slipped on my regular checking as the diabetes dropped.

Part of the problem is a listlessness that I felt last week, where I was getting up two hours earlier than usual and could not think what to do with the time. I had no pressing projects at home and I have not been able to settle on reading for my masters. I thought I had found an answer by borrowing a computer game from a friend, but as usual this just got me addicted and I spend myself spending all day at the computer (even more than usual!).

This week I am sleeping later again. I still have a cough that brings up stuff, although vaguely nice stuff that I am not worried about. I hope that it will get settled when I next go for acupuncture. My lungs are more relaxed now since I saw the Osteopath last week, and as long as I refrain from coughing they should remain so. I hope that doing some exercise will remove the listlessness and perhaps other stuff.

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Mon, Oct 11 2004
Diabetes down

In the six days since my acupuncture my insulin requirements have dropped from 35 to at most 15. I am seeing if they go any lower without taking any of no.9.

I have been coughing more since the treatment since he de-dried my spleen which obviously caused some damp. At the moment I am not worried by the small amount I am bringing up. But to combat some of this I have been taking Lucid Channel and Prosperous Farmer at times, which will also contain spleen tonics and so will have accelerated my drop in diabetes.

The trick will be to balance dryness in the lungs with sufficient damp in the spleen to satisfy everything, and that will be a task over the next few months.

And since it has not been said here formerly, it is now clear that by listening to the acupuncturist I saved myself unnecessary IVs.

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Thu, Oct 07 2004
Bumps etc: the conclusion

Saw the GP, none of the bumps are worth bothering about, except that I will not be pulling any more hairs out of my shoulder. And some moles I was not concerned about need some watching from time to time. He also used the opportunity to do a routine cholesterol and kidney blood test. I like my GP: he does not see me often but uses the time well.

The acupuncture yesterday left me coughing in the night. On conclusion though it really was just the increased damp he was talking about, and nothing to worry about. I have dropped back to 20 mg steroids every other day and will start taking no.9 tomorrow evening. If the cough persists I may throw in a little no.3, or a smidgen of no.8.

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Wed, Oct 06 2004
Strange lumps, preface

My family (well my sister) have often commented on the size of some of my moles. Having found a strange lump left of my eye, and a much newer lump on my right shoulder I thought I better have them checked out. Amazingly the GP had an appointment tomorrow morning. Unfortunately it is at 9.40 :(

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Tue, Oct 05 2004
Acupuncure after the decision

The symptoms I provided were:

  • Sticky sputum
  • Worsened diabetes (still taking 33/33)
  • Thirsty.


Chinese doctors call diabetes the "Thirsty, wasting disease". Normally it is treated with strong spleen tonics which cause lots of damp. Obviously with Cystic Fibrosis this a real problem since the damp sets off the lungs. In fact he described me, as a CF patient, as having a very complex mixture of heat and cold, damp and dryness, Ying and Yang deficiences.

The good thing is that he describes my spleen as calmer and more balanced than he has ever seen it. Unfortunately it is possible that the tincture he gave me last time, no.8*, may have made things worse. He has given me no.9, a totally new, gentle, formula: non-drying, spleen tonic with a small amount of phlegm removal.

And curse him he also wants me to write down my blood sugars. Now I really have to do it.

* What I thought was no.8 was in fact 7b since for once the acupuncturist did not make a note of it. This will, I fear, cause some brief confusion.

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PDA fixed

The E-san study has not been receiving my test results since I had the new PDA. I phoned the help desk and it turns out that quite simply I did not have the GRPS set up. We sorted that out over the phone and it now works a dream again.

Later at work, a user showed me his PDA of the same make. He really loves it, and also showed me his laser keyboard. The keyboard registers every time you cover the entire of letter with your finger; this requires the flat of your finger which seems almost useless for touch typing so I am unlikely to use it myself, but a fun toy anyway!

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Mon, Oct 04 2004
A decision on IVs

Yesterday morning I woke about 7.30. By 8 I was lying on my bed doing a deep physio. Two hours later I was still doing more (I had to do it lying down - it was the only way to ease my sore, tight lower back). Off to church without breakfast (a deliberate decision; I still had four lots of food in me. The diaphragm and intestines use the same space so too much food can restrict physio), and there was more coughing right the way through the service as the singing freed it up.

After the service I coughed all the way home, and the rest of the morning until lunch. In the afternoon I was absolutely knackered, but that was understandable given the degree of physio I had done (I should say that most of the work was Autogenic Drainage which eased much of the effort but it is still tiring). The colour had been virtual colourless before church, but it got much darker and greener as the cloud and rain drew in? Coincidence?

My point was proved this morning when the sputum I brought up was again virtually colourless, albeit sticky. It is amazing what a difference the weather brings.

I phoned up the hospital to cancel the IVs. It was pretty clear to me now that cleaning my room on Friday combined with the increased levels of steroids was all that was needed. That, and good weather.

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Posted at:Mon, Jul 04 2005 11 PM