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.
Mon, Apr 26 2004
I saw the acupuncturist on Friday. Like the Osteopath he thought the dizzyness was
in my neck. So I had some very strong needles in the back of my neck and elsewhere
- it is not every time that he draws blood. Friday I felt so much better I went
for a drink, Saturday I was very tired and had two aches in the back of my head
(where the needles went) and Sunday I was feeling much better.
It does look like that the osteopathy and acupuncture did their work well (eventually)
- at least they diagnosed the problem. However, the steroids and oral antibiotics
seem to be doing the trick on my lungs, and the increased sputum production seems
to be receding at long last.
Tue, Apr 20 2004
Quick hospital appt
Yesterday I went to see the Osteopath. My lungs were really tight, and my neck even
tighter, but he straightened them out and allowed air to seep behind the blockage.
He also hoped he might have sorted the dizzy/unbalanced spells that started Saturday.
Unfortunately this morning my lungs were giving out thick stuff of an ugly colour,
and I spent large parts of the morning hardly functioning due to dizzyness. So I
phoned up the hospital and was given an appointment.
My lung function was down - not seriously but enough to worry me that it might be
heading lower. My blood sugars... well they are not being great (7-10 not 4-7) but
do not seem to be causing me real problems. My oxygen sats were fine at 95 but my
pulse went from 120 sitting to 220 after blowing my lungs out. The real revelation
was my low blood pressure - and the lower differential between the systolic and
the other one.
I have been given another 2 week course of oral Antibiotics (as usual, Azithromycin
and Ciprofloxapen) and my steroids have been bumped up to 30.
I did some research into low blood pressure at work later this afternoon. It would
appear that it is typically a symptom of some other effect, but the only one that
rang true was dehydration - I have been drinking loads of water ever since I came
back from my trip to Holland last week. However, I can find on specific cause for
the dehydration other than the heat that has been on my lungs recently - but why
has that got worse?
Blood results to follow.
Thu, Apr 08 2004
Acupuncture: more of the same
Just as last time, there is phlegm caused by heat and not the other way round. Our
thinking remains that it is a reaction to the anaesthetic. While the plenteous goo
coming up from my lungs and my need for lots of sleep is causing me concern, it
looks as if I am not actually getting worse. Prescription: keep taking the "Magic
Bullets" to reduce heat and phlegm.
Wed, Apr 07 2004
I had my first port flush today. Despite my fears that the port had packed up, it
The bit of string which had been annoying me (and which I had pulled out a millimeter)
was the end of a suture inside the entry scar. It is meant to dissolve in body fluids,
but it seems that the knot has risen up and is causing a bump next to the port.
At least I know what it is now.
Sun, Apr 04 2004
First day of blogging
I keep forgetting what I have done, or when I did it. This is a record for me, which
I give to anyone who cares to read it. I want to keep it primarily on theme, so
hit me if I start to waffle. It may not include every phone call to the hospital,
but should include the major stuff.
My lungs are still producing darker stuff among the clearer bits, but the sheer
quantity of sputum being produced seems to have receded. I have stopped taking the
Magic Bullet since it seems to have stopped being effective, and I am waiting more
diagnosis from the acupuncurist and the sputum sample I gave last week.
Thu, Apr 01 2004
Osteopath: tight on the right
Two main comments from this session. First the muscles on the right hand side of
my chest and neck were very tight. So tight in fact that the work done left me extremely
tired for a day and a bit. But it seemed to work since I had more energy after that.
Secondly, while I was waving words like subclavial around, the osteopath had a clear
picture of where the port line went: between two chest muscles and into the subclavial
vein. Since it went between the muscles and did not cut them he figured there was
little or no internal damage and should present no problems in that regard.