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, Oct 30 2004
Big bad week
"I am still not sure what is going on here..." How true that statement
was. On Tuesday morning my diaphragm more or less seized up. Walking to and from
work Monday and Tuesday helped, but I called for reinforcements and arranged appointments
to see the Osteopath and Acupuncturist Wednesday and Thursday respectively. Both
I think put themselves out for me, the benefits of long-term care and built-up trust.
Tuesday night I went to bed at 9pm, and although I coughed in the night (becoming
very common at the moment, sadly) it all seem to come together and by the time I
had my Osteopath appointment, I was feeling better. However, it tired me so much
that I had to take a day off work, which also helped. And indeed my diaphragm was
extremely tight, so tight that it was not all fixed in one session.
A tight diaphragm basically restricts the lungs and tightens everything below it.
Since many of your major organs (pancreas, liver, intestines etc) dwell there, that
is a lot of knock-on impairment. You cannot eat as much, for one, since your sputum-filled
lungs are vying for the same space. What causes it? Well, among other things coughing!
Also, merely have lots of sputum in the bottom of your lungs will cause you your
lower ribs and diaphragm to seize up (and therefore freeing up those areas will
help you get rid of the gunk).
Onto Thursday and the Acupuncture. Lots of heat, not so much phlegm was the diagnosis.
I was not at first worried about his concern about the heat, despite the fact that
he drained the heat from me more rigourously than he has in a long time. It requires
and Phlegm to produce Phlegm Heat, and I was missing one.
However in the couple of days since then, the phlegm seems to have reemerged, so
I am taking no. 6 as he recommended - a strong ward against a possible true infection.
I am out of no.2, the other he recommended, so took no.3 instead for a few days,
but I will also need more no.6 since that is finally running short - a testament
to how little I have needed it recently.
My steroids are increased to 25 daily, for fear for ABPA or similar. I have been
unable to take Colomycin recently since I ran out of filters for that nebuliser
system. I still don't know if I will need IVs - it is definately on my list of options
and I will be watching my health carefully for the next week. And having lots and
lots of early nights.
Mon, Oct 25 2004
Yesterday: woke up at 8.00, ran a bath, turned bath off, went back to sleep for
4 hours. Woke up coughing up half a tub. On conclusion, drinking lots of water,
thick sputum and increasing diabetes... sounds like too much dryness again so another
small careful dose of no.9. It always makes me worried taking something which could
bring on more sputum, and behold this morning I woke up coughing. And it was raining
heavily outside so I did not get back to sleep.
I am still not sure what is going on here...
Thu, Oct 21 2004
Last week at work...
Here is something I forgot to mention. Last Thursday I worked a whole day at work
on four hours sleep. The lack of sleep was coincidental and down to a badly timed
cough. I was fine until 5pm when I suddenly collapsed in exhaustion. But it did
prove to me that I -can- manage longer hours, albeit not eight hours every day.
I currently work 20 hours per week, which was perfect when I first started here
three years ago. My estimate is that I could push this up to 25 hours now, although
this won't be an issue until I actually start another job.
Swimming - lots of it
I finally got down to the swimming pool - twice. The first time I noticed that I
did not have full lung capacity: I could hardly swim half a length underwater, I
could not feel my whole lungs and in fact I was stopping after every length to catch
my breath. However, I did notice an improvement afterwards and resolved to go again.
So I went again last night. I only managed six lengths to my previous eight (it
is at least a 33m pool to make me feel better), but that was as much due to lack
of time as anything else. I would like to get fitter again though, and it is mainly
in my lungs I think. The good news is that when I tested my lung function (when
I woke at 3.30 this morning) my peak flow was 710 and my FEV1 a staggering 330.
I doubt that the small machine I have with the PDA for the study is accurate, but
it compares well to my recent 270s.
My main reason for not going has been that I do my main Masters reading after work,
the only time I can realistically get down the swimming pool when it is open to
the public. However, since I wasn't really doing that much anyway, and I hoped that
the energy gained would be available for reading in the morning. Moreover, since
I have paid a significant amount for access to the pool I might as well use it!
I am aiming for 2-3 nights a week (Monday, Wednesday then either Tuesday or Friday).
I will keep you posted!
Next, I tested my blood sugars when I got home from the pool on Tuesday. 3.1. That
explains some of my aggressive manoevers. Lucky I have good enough reactions at
the wheel to pull it off and not scare the other drivers. But that is the first
time I have driven while hypo and I hope now that I know what I am looking for.
It also means that I need even less insulin. I tried 7 in the morning yesterday
and went slightly hypo at work, and will head down to 4 this morning. Since I took
even more of the herbs (Lucid Channel, also to clear my lungs) last night, and will
again it is possible that I will take 0 insulin for the odd dose or two, but that
is something that I will need to watch, especially once I come off the Lucid Channel
Finally, I removed the game - Heroes IV - from my desktop so hopefully that will
put an end to that.
Mon, Oct 18 2004
Even further down
My insulin intake is now about 9-11 units morning and evening. I need to work on
getting a better idea exactly where it is - except that it keeps changing still.
I have slipped on my regular checking as the diabetes dropped.
Part of the problem is a listlessness that I felt last week, where I was getting
up two hours earlier than usual and could not think what to do with the time. I
had no pressing projects at home and I have not been able to settle on reading for
my masters. I thought I had found an answer by borrowing a computer game from a
friend, but as usual this just got me addicted and I spend myself spending all day
at the computer (even more than usual!).
This week I am sleeping later again. I still have a cough that brings up stuff,
although vaguely nice stuff that I am not worried about. I hope that it will get
settled when I next go for acupuncture. My lungs are more relaxed now since I saw
the Osteopath last week, and as long as I refrain from coughing they should remain
so. I hope that doing some exercise will remove the listlessness and perhaps other
Mon, Oct 11 2004
In the six days since my acupuncture my insulin requirements have dropped from 35
to at most 15. I am seeing if they go any lower without taking any of no.9.
I have been coughing more since the treatment since he de-dried my spleen which
obviously caused some damp. At the moment I am not worried by the small amount I
am bringing up. But to combat some of this I have been taking Lucid Channel and
Prosperous Farmer at times, which will also contain spleen tonics and so will have
accelerated my drop in diabetes.
The trick will be to balance dryness in the lungs with sufficient damp in the spleen
to satisfy everything, and that will be a task over the next few months.
And since it has not been said here formerly, it is now clear that by listening
to the acupuncturist I saved myself unnecessary IVs.
Thu, Oct 07 2004
Bumps etc: the conclusion
Saw the GP, none of the bumps are worth bothering about, except that I will not
be pulling any more hairs out of my shoulder. And some moles I was not concerned
about need some watching from time to time. He also used the opportunity to do a
routine cholesterol and kidney blood test. I like my GP: he does not see me often
but uses the time well.
The acupuncture yesterday left me coughing in the night. On conclusion though it
really was just the increased damp he was talking about, and nothing to worry about.
I have dropped back to 20 mg steroids every
other day and will start taking
no.9 tomorrow evening. If the cough persists I may throw in a little no.3, or a
smidgen of no.8.
Wed, Oct 06 2004
Strange lumps, preface
My family (well my sister) have often commented on the size of some of my moles.
Having found a strange lump left of my eye, and a much newer lump on my right shoulder
I thought I better have them checked out. Amazingly the GP had an appointment tomorrow
morning. Unfortunately it is at 9.40 :(
Tue, Oct 05 2004
Acupuncure after the decision
The symptoms I provided were:
Worsened diabetes (still taking 33/33)
Chinese doctors call diabetes the "Thirsty, wasting disease". Normally
it is treated with strong spleen tonics which cause lots of damp. Obviously with
Cystic Fibrosis this a real problem since the damp sets off the lungs. In fact he
described me, as a CF patient, as having a very complex mixture of heat and cold,
damp and dryness, Ying and Yang deficiences.
The good thing is that he describes my spleen as calmer and more balanced than he
has ever seen it. Unfortunately it is possible that the tincture he gave me last
time, no.8*, may have made things worse. He has given me no.9, a totally new, gentle,
formula: non-drying, spleen tonic with a small amount of phlegm removal.
And curse him he also wants me to write down my blood sugars. Now I really have
to do it.
* What I thought was no.8 was in fact 7b since for once the acupuncturist did not
make a note of it. This will, I fear, cause some brief confusion.
The E-san study has not been receiving my test results since I had the new PDA.
I phoned the help desk and it turns out that quite simply I did not have the GRPS
set up. We sorted that out over the phone and it now works a dream again.
Later at work, a user showed me his PDA of the same make. He really loves it, and
also showed me his laser keyboard. The keyboard registers every time you cover the
entire of letter with your finger; this requires the flat of your finger which seems
almost useless for touch typing so I am unlikely to use it myself, but a fun toy
Mon, Oct 04 2004
A decision on IVs
Yesterday morning I woke about 7.30. By 8 I was lying on my bed doing a deep physio.
Two hours later I was still doing more (I had to do it lying down - it was the only
way to ease my sore, tight lower back). Off to church without breakfast (a deliberate
decision; I still had four lots of food in me. The diaphragm and intestines use
the same space so too much food can restrict physio), and there was more coughing
right the way through the service as the singing freed it up.
After the service I coughed all the way home, and the rest of the morning until
lunch. In the afternoon I was absolutely knackered, but that was understandable
given the degree of physio I had done (I should say that most of the work was Autogenic
Drainage which eased much of the effort but it is still tiring). The colour had
been virtual colourless before church, but it got much darker and greener as the
cloud and rain drew in? Coincidence?
My point was proved this morning when the sputum I brought up was again virtually
colourless, albeit sticky. It is amazing what a difference the weather brings.
I phoned up the hospital to cancel the IVs. It was pretty clear to me now that cleaning
my room on Friday combined with the increased levels of steroids was all that was
needed. That, and good weather.