A "fan" site created by People With CF. Highly recommended.
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.
Tue, Aug 31 2004
There and back again
I had a scare last week. By Friday my lungs were feeling so bad that I thought I
had better talk to the hospital about some oral antibiotics. The reply - that I
(definitely) needed IVs - shocked me so much that I took different herbs to work.
See, after Tuesday my lungs didn't feel quite all back, and my blood sugars started
rising again so I thought I had better try this stronger dose of nos 2 & 3. On Friday
I took some Lucid Channel to work. And I got better.
Unfortunately life is not perfect. Although my sputum is thin again and my blood
sugars are down (I took the opportunity of respite not to stab myself 5 times a
day), it is not a fantastically healthy colour and is getting that little bit darker
every day. I am coughing a little bit throughout the day. And my chest and diaphragm
are tight. I am making an appointment as I type with the Osteopath to solve the
latter, and it may well help with the others.
But I am going away for a study week and I am not confident that I will walk away
from it without a course of IVs afterwards. If something is going to go wrong, it
will go wrong there. I will however get to enjoy Aberystwyth once more.
Wed, Aug 25 2004
Kapow to diabetes
Well, not quite. But I did a lot of testing of blood sugars during supper last night
after my session of acupuncture. As I started to eat I felt what could be a hypo
so only took 13 units of M3 instead of what I had been taking (19 or 20). I took
readings at two hour intervals - 6.7 / 9.1 / 7.6 - and then in the morning - 3.4!
Yes, one session of acupuncture dropped my insulin dependency by 6-7 units in the
space of a few hours. Now to make sure my lungs clear up as well...
Tue, Aug 24 2004
I went to my hospital appointment with slight trepidation since my lungs were still
full of green stuff brought on from my adventures from last week (see Mon 16th).
My results from the PDA trial boded well though and my lungs did feel like they
did just before I went away.
So, lung function was 3.15/5.1 - not great FVC but a perfectly fine FEV1; My weight
above my ideal weight of 71.5; and my 3 month blood-sugar thingy was
6.9. While 4-6 may be normal human (I understand 6 is more normal than 4), 7-7.5
is good diabetic so 6.9 was cracking. All of which meant I was very casual about
the worries of everyone since I knew I was doing fine. I did agree to actually get
some blood sugar results for the diabetic team though, and to test my blood sugars
before I went home from work if they gave me an extra kit. There is a standard worry
about having a hypo while driving; understandable, but I don't think they realise
how much self-control I really have. ^_^
The gunk I was bringing up really was a nasty colour so I promised to call back
in one or at most two days if acupuncture could not solve it.
So, an hour later I turned up for my acupuncture appointment. Diagnosis: phlegm
heat and no infection or fire poison. Cure: more draining of heat, and a point to
strengthen the spleen; a mixture of numbers 2 & 3 taken in larger doses should also
work to reduce heat (better hopefully than no.6 which I had been taking - it worked
but was drying out my lungs too much); Prosperous Farmer later as a spleen tonic
to cure spleen deficiency - and hence reduce my insulin dependency again.
We raised the question of what causes CF diabetes. Is it actual tissue damage or
is it caused by secretions blocking the pancreas? Answers on a postcard.
Mon, Aug 23 2004
I have now written up some reference guides on Chinese herbs and an updated article
- see above.
Mon, Aug 16 2004
For the first time in ages I felt up to a whole weekend away, for a series of roleplaying
games in Birmingham. I took the train since I was knackered after a whole morning
cleaning my room.
I probably should have taken salt tablets, because despite the weather forecast
it was hot right up until midnight - not to mention the heat from the hundreds of
people. My silk shirt was covered in sweat on Friday, and by the end of the weekend
my jeans were almost stiff. The timing of the games meant that I did not have many
opportunities to eat, but I did manage to get at least one proper meal in every
day. Most importantly, I slept in the (mostly) comfy hall of residence bed, if not
for the 11 hours I needed (I did not get in much before midnight both nights).
That is the bad stuff. The good stuff - apart from two cracking games and a good
one - was that I kept going so well. I walked about 2 miles 4 times AND had 16 hours
of gaming AND ran around like a madman at times AND had the energy to leap over
fences like a pro. I had a wail of a time and had the energy to do it.
It did eat at my reserves however, and it will probably take a week to fully recover
them, but a few years ago that would have been a week or more off work. I fear that
much of the work that the Acupuncture did to drain the heat from my lungs has been
undone, but when I have more energy I will see what no.6, 3 and Pinellia can do.
I also found that the PDA can tap into wi-fi networks, and that there was one in
the hall of residence (this site, for instance, came out very well on such a small
screen, if a bit narrow). Later I found I had a weak signal for one at home as well.
I will have to check, but if there is wi-fi floating about I could get free, if
slow, internet. I will have to check the manual. Just occasionally there are perks
to being ill.
Thu, Aug 12 2004
And verily the needles did drain away the heat. There was a lot of heat in my lungs,
but all very recent; within a day all the phlegm had turned thin and pale again.
Very healthy lungs again.
Tue, Aug 10 2004
The hospital have sponsorship from O2, the mobile phone company, for a trial using
a mobile/PDA. The idea is that you fill in a simple questionnaire every night and
then do a breathing test on a portable respirometer. This information is sent back
to a spreadsheet in the hospital and it alerts the researcher/doctor whenever there
is a consistent drop in results.
Two things occurred to me immediately: one is that this is a really good idea. Standard
appointments take place every 1-4 months, but illness is rarely likely to strike
conveniently; it also forces patients to think about their health more regularly.
The second is that the questionnaire is rather too simplified.
It is an interesting experiment and I am curious to see how many times I am classed
as "deteriorating" after a heavy weekend. I also get a PDA to play with.
As an addendum, it turns out that I have a "non-bleeding" port, meaning
they cannot draw blood from it. Luckily, my elbow veins are still good for taking
Mon, Aug 09 2004
Return from holiday
Wow. Lots of Sun. I very rarely take salt tablets, but in heat like this I lost
far too much salt from sweating.
Also I was surrounded by fields of wheat and barley being cropped which caused my
lungs to relax. So although I became much fitter due to swimming once or twice a
day, my lungs became much thicker.