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.
Sun, Aug 28 2005
Once again, I have the symptoms of dryness, and tightness. I have been taking no.9
somewhat, but it dries almost as much as it moistens - it was carefully balanced
like that, which is no use in the new, dryer house.
It has been tough, since I am having troubles eating my normal amount of food, and
going to the gym / swimming has been near impossible. The best solution was the
long walk I took to work yesterday, up and down hill as happens in Bristol. I have
been feeling tight and full.
It hasn't helped that I have been having late nights (partly hooked on the computer,
partly trying to organise a tournament with people in a vastly different time zone,
and partly worry about the upcoming surgery.
In other news, I have been in contact about my Masters, currently on hiatus - about
how taking time out to recover from the anaesthetic might affect me. I have exactly
two years, of which 18 months is dissertation time. This leaves 6 months for 3 modules...
plus recovery time. Luckily I have started two of the modules, although they are
not without problems. The third one is literature research which I would hope I
am good at. So there is a chance, but it depends somewhat how things go with the
The update on the surgery is that the surgeon won't return until 5th September.
I haven't felt any blood surges (except occasional pychosommatic ones when I think
about it) so I have no problem waiting - luckily! Because the op. is pretty straightforward
as they go, I anticipate being whisked into hospital that week, and slotted in between
I have also managed to get Broadband to work and stay working. My mother's computer
no longer needs work. I really have little excuse not to do Master's work now!
That's about it. I have finished my game, I am off to bed!
Wed, Aug 17 2005
This is the conclusion, just a little dry (according to my acupuncturist).
I finally made it to the gym on Monday. Following recommendations from the physio
I did 20 minutes on the cross-trainer (on level 10, so not too tough) and that was
not too bad at all. I will try for a full 30 minutes next time. Then I did 2 minutes
on the rowing machine, again not too bad - but I am aware I need to increase things
gradually. Since heavy exercise is my worst area at the moment, I hope to increase
this to 10 minutes. Finally, a round of weights with just minor increases. That
did leave me feeling tired but only slightly - I did not collapse like sometimes!
Last night I saw the acupuncturist. I thought I was a little hot, but rather I am
just slightly dry which is a different problem. I was described a rather bizarre
image of the kidney being heated by yang chi, sending the "water" of yin
chi as vapour to moisten the lungs before being cooled and sent back to the kidney.
Anyway, the key is certain kidney tonics, and tonics for the spleen and lungs. No.9
is almost perfect, except slightly too drying maybe, so I am experimenting. If I
continue to have "random coughs" or they get worse, then a more specific
formulae may be needed.
Wed, Aug 10 2005
I was due to see my normal Osteopath Monday, then realised I was double-booked and
made an appointment with someone I saw once before, two years ago. It is a bit like
being seen by a locum teacher, in that no matter how much they teach you, they will
almost certainly not be able to continue the forwards movement set by the normal
Even before I got there, my body was sorting itself out. Since the holiday, it has
been slowly relaxing of its own accord, and my physio has been slowly clearing the
fluff and getting out the deep gruesome stuff that built up in my recent bad spell.
A 25 minute walk down stretched me out some more (and made me promise myself to
walk more often).
The Osteopath sped all this up. Even as I walked back, I was moving deep stuff,
and in the course of the day and last night I shifted even more (getting fouler
as it goes). I haven't managed to sit down for a decent physio today, but I hope
to get one in before bed (or tomorrow morning, my first without things to do).
The Perilous Port
My annual review was on Monday. In Bristol, this means seeing all parts of the team,
as opposed to just some, and answering questions for the whole year as well as the
last month or three. This is useful for the same reason as this blog - it gives
you an overview over time.
We started with bloods and a port flush. The bloods flowed without problem, even
keen to leave my body - I will talk about the port later. Then the physio - told
to keep doing exercise, aim for 20 minutes on the bike, and not to block my throat
when I hold my breath. And the dietician - I did the food diary from memory while
I was waiting - yes I care that much about it! - who was happy and, unusually for
dietitians, not patronising.
Breathing tests were done in the consulting room since virtually all the normal
staff were away, and they were not good (2.85/5.2), but what I expected after the
move and lack of exercise. This is definitely down from previous years, but exercise
will get some of that lung function back.
The big problem was my port. It wouldn't flush, so when we got my x-rays back, we
took a look. You can follow the white line of the port tubing on the x-ray as it
loops around a rib, back towards the neck up, around and down... except it wasn't
going down, but straight up the jugular. Theoretically, it might flush there but
for some reason (hidden kink, internal clotting or more likely against the wall
of the jugular) it is not.
More importantly, nobody there liked the idea of a canular in the jugular. Apart
from simple obstruction, if it clots there bad things happen. Nobody wanted to spell
it out, and it was left to our imaginations - and now yours. I have been given the
warning signs, and there is another vein opposite which will cope in an emergency.
(*shudder* ooh, it gives me the creeps just writing this stuff.)
I learned this morning that the relevant surgeon is away on annual leave for another
three weeks (I am not complaining - the less stressed the surgeon the better for
the patients!), and the conclusion was that my port has last this long in this position,
it can last a while longer. So another operation in about three weeks.
The operation itself is minor, by standards of heart surgery. Either the tubing
or the whole port is removed and replaced (hopefully just the tubing, but I am not
too worried about that, scars aside). The real problem is that last time - only
18 months ago - it took me 3 months to recover from the anaesthetic. In my favour,
I know what to expect, I am fitter and I have a better handle on Chinese herbs.
However, I have had to let Aberystwyth know that I may have to extend my time off
Yes. This one rather got to me.
Back from holiday
Apologies for the delay - we actually got back on Saturday, but I have been so busy
or tired that this is the first day I have had time and energy to write it up. Wales
was... cloudy. I will not saying miserable, but the gloomy weather did mean that
we - me especially - did much less exercise than we would have liked, with obvious
consequences for my fitness. Still it was two weeks of fragrant relaxation, and
I managed to replenish my stores of energy, heavily depleted by the move.
Not only that, but as has happened before, my lungs turn out indeed to have been
excessively dry, causing the pseudomonas-like symptoms of thick sputum and high
blood sugars. Once I was taking the right herbs (anti-heat or Prosperous Farmer
as it happens) I went from needing 40 units of insulin to half that virtually overnight
- I was running almost continuously hypo for three days.
So I am back and feeling good, although I need to get down the gym when I have time.