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.
Sat, Dec 25 2004
Well, I made it, just. I was doing better, until I picked up a cold or such. So
another week of no.10, and I started taking Echinacea when I had the cold to improve
my immune system. Amazingly it seemed to work a treat, so I may take it more continuously
in future. My PDA was also delivered back earlier in the week by the CF nurse, and
the Christmas cards I finally sent out on Tuesday arrived yesterday.
So, Christmas Day: my appetite is back, my sputum is thinner and clearer and I have
more energy. But I still get tired, and there is a bundle of rugs from a relative
sitting in my rooms generating further dust. I am being careful not to push myself
too hard still, until things come back to normal. Mostly though the cough is reactive
(from dust, presumably) rather than bubbling.
Finally, I have been reading a 1995 article from Scientific American, which gave
me an incredibly clear insight into why and how CF causes the problems it does.
I then spoke to a friend working in the field, who pointed out that the research
has moved on quite a lot from that. She has promised me that she will point me to
relevant articles when they emerge (although I fear many will be too scientific
for me). For now, she has told me to look up "circumin".
Merry Christmas everybody.
Thu, Dec 16 2004
The herbs have been doing their trick, but I made the appointment so I went. He
drained lots and lots of heat out (although he says that if anything there is less
heat there than last week) and I have spent the afternoon coughing up stuff he freed.
I took the afternoon off work at his clear suggestion, and I am glad I did so because
now I am free to do physio while I have the energy. Ahhh, energy: I am so glad to
see you again!
I am having a port flush this afternoon - in my current state I actually took up
their offer of coming to the house - and I will send home my PDA for the E-San study.
I have been getting more and more error messages, and the doctor started complaining
that I was not doing the study every night. In fact the problem of not doing it
nightly must be widespread because he even got an article about it in the local
Incidently, I used my steadily increasing energy yesterday and today to install
a few missing programs and to finally copy all the fonts from my old computer to
the new. It required three trips with a 64MB flash drive to copy them across! I
must also say that Thunderbird rocks: it has all the great features of Outlook Express
with none of the drawbacks and extra perks as well. I can now check my home email,
work email and newsgroups all in the same program.
Tue, Dec 14 2004
Off ill - ninja virus again
The ninja virus struck again - thick, discoloured sputum, tiredness, but no increase
in diabetes. I am taking no.6 and the new no.10 as diagnosed by the acupuncturist
and have another appointment this week. However, with effort I finally tidied my
floor last night so I could hoover. Wow, I must have slept so much better and I
feel better. I probably need to dust today as well, but it is amazing what dust
can do. Now I just need to make sure that a) it stays hoovered and b) I haven't
given space for my pseudomonas to grow.
Fri, Dec 10 2004
I had a particularly useful visit to the acupuncturist yesterday. It turns out that
none of my ideas were correct other than that I do not know what is going on. Despite
the low and stable blood sugars, there was significant heat in my lungs. The thought
is that it remains from the "ninja" virus of last week, and the rumours
about the bug suggest that it has a long recurring lifecycle. However, heat is treated
the same way regardless of the cause.
The treatment left me feeling tired (or brought my general tiredness to the fore)
and I slept in until after 11 o'clock today, but I do feel much better. I will continue
to take no.6 and no.3 until it is all gone. I am sure part of the betterness is
knowing what the problem is!
Btw, if any of you want to know if there is chinese herbal practitioner near you,
I urge you to check out the website of
The Register for Chinese Herbal Medicine.
I think many of the practitioners are also acupuncturists but there is a link from
the site to the British Acupuncture Council (as well as other alternative therapy
Mon, Dec 06 2004
Yes, it was a bug
With some early nights, the bug mostly went by Saturday, at which point I was left
with a chest full of sputum to clear out. Good colour, still thick. I have continued
taking no.2/3 which stopped the infection coming and removed the heat. But I am
still more tired than I should be, and still producing.
Thu, Dec 02 2004
I have remained incredibly tired. I have had to cancel a couple of commitments and
have been little more than a zombie at work on a couple of days. I finally took
a strong mixture (will 5 teaspoons) of no.2 and no.3, and I seem better today, although
there is a way to go yet. However, my sputum seems more thick thank infected, in
spite of being green at times and there is a strong theory of a Winter bug rather
than anything CF related, and I am pretty certain the cold, damp weather has not
Still, I am too tired to make a strong analysis so I will keep taking different
herbs until something gets a result. For instance, after taking the spleen tonics,
my sputum went, and remains, much thinner. All comparative, of course.
(If this sounds like drivel, I blame the tiredness!)