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.
Thu, Jan 26 2006
Soo... an answer?
As I wait for various bugs with my computer to fix themselves, I feel I finally
have the energy (and the motivation - boredom) to update!
I saw the osteopath last Tuesday after I wrote the blog. This was not my usual osteopath
or even my usual stand in (they were both fully booked or on holiday) but a woman
I have seen once before. She does not have the physical strength to push, pull and
squeeze my muscles, so she relies totally on very subtle manipulations - yet it
is almost as good as the more vigorous routines. In fact, I think it only really
falls short on tackling the diaphragm. She is definitely one to to return to.
All last week I continued to have problems with my lungs. The osteopath and the
anti-heat herbs helped a lot, but by the weekend I had to wonder whether the herbs
were starting to do more harm than good. My lung function is severely down, although
my diabetes, as long as I stayed on the herbs, was slowly creeping down (currently
on 17 units needed). By Wednesday this week my sputum, although still a reasonable
colour, was getting thicker and tasting of heat again, and my energy was dropping
once more. From experimentation (and sleepness nights) I concluded that taking no
herbs was worse than taking the anti-heat, but I could not find anything more suitable.
In the end I went for a teaspoon each of no.11, anti-heat and the heat-less replacement
of no.9. This seemed to have some benefit.
I went to the gym last Wednesday, and struggled through a short routine... my strength
is still down. On Friday I went swimming and amazingly did seven lengths - although
they weren't amazing lengths, I managed a few without stopping at the deep end.
On Monday I actually managed 10 minutes on the cross trainer, although I was struggling
near the end of the weights. My real worry is when I get out of breath just moving
from one building at work to the next...
There is a small amount of hope on the horizon though. Last week I resumed the trial
I started and had to put on hold
October. That was just a matter of using the flutter last week, and sitting
in a bath this week. My lung functions last week were terrible - 1.6 / 3.5. On Wednesday,
they were not much better - in fact after the bath they were distinctly worse; the
trial is hampered by the fact that lung functions seem consistently worse after
just sitting in some water, regardless of any effect the sound waves through the
water may have on my sputum; I had semi-confirmation from the man running the tests
that it was not just me! However, changing the herbs (and having a good nights sleep)
seemed to make some difference since I made 1.89 / 3.9. I still have a long way
to go - and I think the gym will help a lot here - but it *is* an improvement. My
goal is to push the figures up a litre each before I go to my clinic appointment
in just under two weeks. Eeep! Some hope...
As a side bonus to doing these tests, they will pay me a little money ("expenses",
honestly Mr Taxman), and I get something that seems to be called an iPod Shuffle.
The cheapest of the iPods, it might still fetch £60 or more on Ebay for the
CF Trust. If I ever get around to it. The actual cash I will keep, since it will
pay for half of one of this year's holidays or half my dad's Christmas present...
yeah, some expensive things this year.
Finally, I saw the acupuncturist today who solved my diagnosis difficulties. Heat,
but not much phlegm. My slightly unclear theory is that the phlegm-herbs within
the anti-heat tincture were drying the lungs, which as I learned previously then
starts generating its own heat. It was also inappropriate, apparently, because it
targeted the liver. What he has now given me, no.13, is a tincture version of no.10
less the phlegm herbs - a lung targeted anti-heat formula. We will have to see what
Tue, Jan 17 2006
I woke up on Saturday after a bad night of coughing up thick, dark sputum with the
realisation that the symptoms were those of
heat. Since then I
have taken large quantities of the anti-heat tincture with good results. My sputum
is thinner and lighter, and my lungs are getting clearer. But they are not clear
yet. I went swimming last night and, although I could have swum a lot more, I stopped
after four lengths because I could not swim and cough at the same time. However,
it did its job of moving muscles which are not used to being used. Things -are-
Fri, Jan 13 2006
2006, and I am already late
This is my first blog entry for 3 weeks. Not good, but I just have not had the concentration.
No. 9 which did me such wonders before Christmas caused problems afterwards. My
sputum was becoming thick and sluggish, and so was I. My diabetes started going
back up again. Work started and I staggered through emails and problems, but could
only summon enough concentration to read webcomics in the gaps (don't worry about
my job - I am not paid to be pro active).
I saw the acupuncturist last week, and he went along with my suggestion that I was
dry, and he mixed up a new tincture based on no.9, but less dry. Unfortunately this,
if anything, made the problem worse. Sitting down with my family, they helped me
realise that my symptoms were that of static chi, and a search through my blog showed
me that the last time this happened I was also on no.9 - and that stopping it helped
So I stopped the herbs and went to the gym (this was Monday). Ug, I am unfit! I
have also lost a bit of muscle strength, but nothing that won't be recovered. It
was good though, it stretched out some muscles that seriously need stretching. I
then came home and fell asleep about 8.30ish. It was an unsettled night, waking
up for 5 hours in the middle, but it did start me going to bed earlier, which helped
a lot. The late nights and excessive lie-ins were not healthy, although I think
they were more a symptom than a cause.
Wednesday I did some training in the morning. I was still not up to a whole day's
work, as I have sometimes after morning training, so I went home, planning to splash
around in the swimming pool in the afternoon. But true to form, I got distracted
and did not go - whether this was laziness or actual lack of energy I cannot say.
Anyway, Wednesday ended up a late night. This morning I woke up doing a lot of coughing,
so much so that my late start ended up an even later breakfast. Anyway, I ate three
bowls, albeit not quite as full as normal - my appetite -is- returning. After breakfast,
I did my first nebuliser in a while (Colomycin, not DNAse), and took some antiheat
- my sputum, yellow with little green through the whole static chi business was
now getting dark as well as thick.
Then by lunch time, sputum was starting to move, always upwards. No sooner had I
coughed one lot up than I could feel some more creeping through my bronchii, impairing
my breathing. One of them got stuck in my throat, forcing me to work hard to move
it before I choked and I threw up. Yeah, pleasant - mostly water, ADEKS (vitamins)
and odd bits of swallowed sputum. I did not feel up to lunch after that, and the
sputum did not seem to be stopping so I called off work - I did not want to accidentally
do the same in the middle of the library.
The only remaining question - for tonight at least - is why I am up at 2am when
I am trying to get better? Well, for the first time in a while I have been able
to concentrate. I played an online game which took longer than I expected, had a
late supper which I ate faster than expected, and have been doing a few odd jobs.
Including this long overdue blog entry. Happy 2006!