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.
Fri, Jan 28 2005
I am healthy!!!
I should have written this up on Tuesday, but I seemed to have been overly distracted
by computer games and physio.
I - almost - have proof that the doctors were wrong. On Tuesday my acupuncturist
said that I was doing very well, that there was no heat and very few of my normal
symptoms. And on reflection, he is correct. There is a build-up of phlegm and as
I suspected at one point, the green sputum is the stuff that is old. Spleen (pancreatic)
problems, so he says, can also be caused by a build-up of cold phlegm, and I have
already established that a tight diaphragm causes insulin problems.
Since then I have continued taking no. 11, which really has got everything moving.
My lung function has been slowly creeping towards a more normal figure. Another
huge dramatic shift occurred after swimming last night, although it was an exhausting
process dragging old stuff up from the depths of my lungs. I suspect that it all
landed there during my hard Christmas, and I am only now being able to clear it.
The reason I cannot prove that the doctor was talking rubbish is that in my worried
state over the weekend I started the antibiotics, and so objectively there is no
reason not to credit them with my improved health, although antibiotics have never
worked this way on me before. Unfortunately, to minimise the chances of my infections
becoming immune to the antibiotics I now have to continue them to the end of the
course, and cannot stop them in order to prove myself correct.
On another note, the acupuncturist read through the explanation of CF that I recently
received from my sister. The very clear article from Scientific American basically
explained how certain cells in CF patients block the correct transfer of salt, which
cause the consequent problems. Over the last 3 weeks then my acupuncturist converted
the scientific theory into chinese medical terms, and the results were very interesting.
I wish I had his diagram and explanations to put up.
The first point is that the science matched very closely what he had worked out
from treating me, meaning we were largely going in the right direction. Secondly,
certain factors are present in CF which he had not been totally aware of, leading
to possible new avenues of treatment; one of these is salt treatment which I will
explore soon; another is the kidney cycle which has already been touched upon; a
third is the liver cycle. The latter has already proved to be interesting: no.11,
which I have been using recently, can be considered a liver treatment, and it may
be that although my liver is not bad enough to show up on hospital analysis, there
may still be some problems there that generate problems elsewhere, such as the lungs,
and that solving the liver problem may be a way forward.
To be continued...
Mon, Jan 24 2005
I spent the weekend hunched in front of the computer playing computer games. Part
boredom, part trying to take it easy, and probably no good for me (especially the
late nights). Saturday night, my lung function was still wayyy down (FEV1 250 according
to my home kit) so I started the antibiotics. It did not help that the events I
thought would take me away from the computer more or less did not.
Last night, nothing much had changed. Having had no success recently with no.2 or
no.3, I took some more no.11, hoping to stir things up. Just before bed, I tested
my blood sugars - 18.0, a really good sign that I have an infection*, although a
stiff diaphragm could be a factor. Because of this, I also took about 4 capsules
of no.10. One of them must have done the trick, because after the initial hard cough,
things started flowing.
I had about 4 bouts of physio throughout the night, but I feel quite rested so the
sleep inbetween must have been good. I suspect that having a lumpy towel underneath
helped, but it would not have worked if one of the 3 treatments had not loosened
everything (the antibiotics, no.11 the chi-mover and no.10 the strong heat remover).
The curious thing is that the sputum is still bleach white with just a hint of green.
I am seeing my acupuncturist tomorrow, so maybe he can shed light on the matter.
* Not that I was hyper, but that was hyper without changing my diet and insulin.
# Corrected on 28.1.05 (herb numbers wrong)
Fri, Jan 21 2005
The first night of swimming on Wednesday was very dramatic. My initial dive only
just took me over half way down the pool, and I never did much underwater swimming.
I just could not hack it. My muscles were so bad that I only swam in the second
lane and I got somewhat breathless (not unmanageable, but noticeable). The most
significant thing was that it opened up a part of my left lung which needed clearing,
and I spent most of the night doing that (well, a few hours).
I swam again last night, and it was not quite such a break through on the physio
front. However, I am already improving again, going a faster speed and my initial
dive took me 30 metres underwater, most of the pool. On the second attempt I swam
half the pool underwater from standing, and generally I was swimming more strongly
albeit still somewhat breathlessly.
It does seem I am putting too much effort into getting this stuff up because I am
coughing up specks of blood from a series of burst capillaries. Nothing to worry
about, but it is a sign that the lung there is damaged. Not good. All the phlegm
is coming from the left hand side of my left lung, and it has probably been rotting
there for a month or so. I am guessing there is a similar patch on the other side
but I have not been able to get it to move. If my lung function remains bad it will
support that argument and I will have to start the oral antibiotics after all. More
Wed, Jan 19 2005
Hospital appointment update
Well, I was quite surprised by the results of the hospital visit. My lung function
was down to 2.7/5.0, as opposed to the 3.x/5.5 I like to have. However, there remains
some dispute over the cause of the poor lung function. The senior registrar, as
could be expected, pushed the infection cause. The physio on the other hand could
not find any point in my lungs which was crackling or which did not have air flow.
Myself, despite bringing up a comparatively large amount of sputum yesterday for
when I am well, could not find anything in the colour of the sputum to suggest infection.
There is an idea that my lungs are simply unfit and need to be stretched and exercised,
and I will be testing this out for a couple of days before I use the oral antibiotics
I have been given. Certainly nothing much wants to come up this morning.
Tue, Jan 18 2005
I am normally at work at this time, but since I called to tell them about my hospital
appointment this afternoon (with thanks for the nurses for reminding me. Doh.) and
they are not expecting me, I took the opportunity to do extra physio.
I am knackered. I have been overdigesting food, causing pains and holdups, and I
have had trouble eating. Nothing serious, but the stitch I got when I went swimming
last week was another good indicator that my diaphragm was tight, the back pains
too. So I saw my cranial osteopath this morning. I had already spent an hour or
so doing long overdue physio, and when I came back I could hardly stop. Nothing
wrong with the sputum except volume and that it was kept down for a bit too long.
So the physio and the walking down to the osteopath (and back again, uphill) leave
me feeling a bit tired and need of rest before my appointment in about an hour.
Hence the taking a bit of extra time off work. Ah. *stretch*.
Sun, Jan 16 2005
In the rather long time since the last update my health has improved almost to its
limit. The crunch point was on Thursday when I finally felt up to going swimming
and had the time to do so. Six gentle lengths later (of a 33m pool I should point
out) and I was revitalised. My energy started moving again and I managed to get
to bits of my lungs untouched for weeks or even months. My muscles are still flabby
from these last few months without proper exercise, but the one session has reinvigorated
me and I look forward to getting back into an exercise routine.
The only slight downside is that I took some no.3 in case the stuff coming up from
the bottom of my lungs was new not old, and proved only that it was old stuff. Between
that and various other over-drying I have been coughing too much and have a bad
back. I need a trip to the Osteopath I think.
The only other note is a reaffirmation of the power of echinacea.
Tue, Jan 04 2005
Stagnant chi and cold phlegm. So no. 10 really did get rid of the heat, but between
the dust, repeated coughing and lack of exercise everything just built up. It is
possible I even overdid the no.10. However, considering the colour of my sputum
and my lung function I wonder if the new concoction (no.11), designed with a tiny
amount of phlegm and much chi mover, will really deal with it. The theory is that
the yucky sputum is because it is old and unmoving. So fingers crossed.
There is further good news and bad news. The bad news is that my family are dropping
like flies, and the rest are turning into vultures. The good news is that I am none