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.
Tue, Aug 29 2006
And the antibiotics make things worse
I finished the antibiotics on Thursday and this is the first day that I feel human
again. What gives? Once more antibiotics show that they as much a hindrance as a
help. In my blowing test last Tuesday, my results were barely above what they were
the week before. I am still going hyper while taking almost double the level of
insulin I took 6 months ago. I am producing thick, dark sputum and I have been very
So the questions:
Do I actually have an infection that the oral antibiotics failed to stop? They
symptoms are there, but it makes little sense.
Did the orals actually hit my immune system so hard that an infection developed?
Is it something else completely?
This insulin cartridge went on holiday with us. How much was it affected by the
heat while being transported (and thus weakened)?
I cannot help wondering if taking no.14, as recommended to take me forward since
it contains tonics, made things worse. I am certainly wondering if I am over-dry
(actually, I know I am) - and what caused it / how I fix it. I have been mostly
taking no.15, which ought to do something. I will try no.11 this afternoon, to see
if this anti-static chi formula gets something moving. I will also try to get more
sleep (a bit of a problem with high blood sugars - they make me sluggish and so
hard to get into bed.
Thu, Aug 17 2006
A week into antibiotics
I am knackered - but not as much as I have been. Azithromycin really seems to hit
me hard, and my body has also wanted to regularly wake up after just seven hours
sleep. Yesterday I managed to get back to sleep and wake at 11.30, and I woke at
10.15 this morning so I am feeling quite a bit better.
Actually, apart from my poor lungs, my health is quite good. I did fifteen minutes
straight on a cross-trainer on Monday night followed by a full (if comparatively
gentle) round on the weights machines. Not only am I still fit (I almost got to
2km - yay!), I seem to have some muscles still. One of my many appointments on Tuesday
was to the Osteopath who also could find few specific problems.
My lung function on Tuesday <em>was</em> better - an FEV1 of 3.5 - but
not as good as I might hope. Particularly galling was a bit of information I picked
up recently and was confirmed on Tuesday - the lung walls of CF patients get thicker,
restricting the breathing without any particular infection. The results from the
software used for this research suggests I do have thicker-than normal lung walls,
but without talking to the doctors I have no confirmation that this is particularly
significant. However, if it means what I think it means then it is the explanation
of my recent lung deteriation and <strong>nobody told me about it</strong>
(I got the information from the <a href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169">CF
So not only might the antibiotics have been completely unnecessary (still a maybe,
sadly), but they also do not work alone. As an experiment, I did not take any herbs
from Monday to Saturday (in fairness, without antibiotics I was planning to stay
off them for a few days). Three capsules of no. 15 and I lose the dry cough and
I start bringing up dark sputum from the depths of my lungs where it has been stuck
through dryness. How do people manage without herbs?
Unfortunately, my tiredness has mostly impaired my ability to write essays, and
even to do Rage stuff (although, because it comes in small chunks, I have been able
to do a reasonable amount of that). I hope I have enough energy to do the shuttle
test scheduled for next week. The good news is that my port flush was done Tuesday
as well which saved time. The bad news is that trying to do two nebulisers a day
when you come home from work virtually asleep already is not only difficult but
has contributed to me going to bed even later than I would otherwise. *sigh*
Postscript: Just been to Acupuncture. He thinks I am the best he has ever seen me!
Unfortunately, if my hypothesis about the lung thickening turns out to be correct,
he does not think there is much he can do about it. The plan is to move back to
no. 14 which has more kidney tonics
Thu, Aug 10 2006
The Summer is over?
This has been a busy month. Under the full effects of the Sun, I was buried under
activity. I almost finished one module's essays, but spent more of my time doing
work on Rage (the card game for which we are producing a new fan set of cards) -
in the peak of playtesting I was getting new lists of things to change on the database
every day. And then came the family holiday.
Unfortunately, the holiday was delayed since my mum picked up a bug - and then once
we got to the campsite, my father picked it up too. Luckily it was only just over
two hours away and I was well enough to do over half the driving. Because of the
illness and the incredible heat we only did a few proper trips (I did a lot of the
driving again). It was very good rest though since I was away from the computer,
with just rest, reading and a warm swimming pool. Actually, two pools - the outside
pool was normally so cold that it contracted all my muscles making my breathing
difficult. Luckily the inside one was beautiful and, although it was about a quarter
of the length of my normal pool, I did many lengths and spent several half hour
sessions in there. I would have liked to stay even longer, but time ran out.
On Saturday, still recovering from the long drive and being hit by our overly warm
house all day, I started digging into the inevitable build up of Rage tasks - and
ended at 5am. This earned me a stern talking to from each member of my family in
turn. Still recovering from all this, I went to my annual review on Monday (continued
on Tuesday -3 hours just seems to go nowhere). Usual warning from the diabetes team
about checking my blood sugars before driving (oops - I may not be concerned about
the five minute drive to work, but I should have checked them before the long motorway
drives). My weight is still over ideal (73.3kg), and my X-Ray revealed, joy of joys,
that my port catheter is still in place and not shooting up to my neck.
However, my lung function, not entirely surprisingly, was down (again or still?)
(2.05/4.45). According to the head consultant, Itraconazole, the antifungicide I
have been seeking, is one of the most horrible drugs in existence. However, talking
with the CF fellow, we decided to see if oral antibiotics restored my lung function,
and from there we might be able to work out how to use oral antibiotics to keep
things in check. It was pointed out however that a certain laxness about using my
Colmycin nebuliser (it was getting to be used just a couple of times a week due
to the inconvenient arrangement of the setup in my bedroom) was probably causing
more problems than not taking - probably causing resistant pseudomonas to grow.
*sigh*. To that end, I was also given Tobi again (pre-diluted Tobramycin nebuliser),
although warned I was unlikely to get it regularly since it was so expensive. I
wonder how it compares in price to DNAse?
So now I am on antibiotics and I suspect that my current tiredness is due to the
hit they gave me - however, I will slowly recover from that. I also had a sore throat
and irritating unproductive cough yesterday, which are almost certainly symptoms
of the bug my parents had. I am hoping that early nights and lots of rest will pull
me through. Herbs - I have been taking lots of number 15, and indeed I suspect it
allowed me to enjoy sunshine more than I have for several years (sadly I returned
more red than brown). I have also used occasional does of no.11 to bring up sputum
although sometimes it did not hit the mark. It will be a blow if the antibiotics
do fix my lung function where the herbs and acupuncture have not.
Finally, it was noted that I have not had IVs due to "exacerbations" for
over a year, although I had IVs during the port op. in October, and oral antibiotics
over the port op. in April.