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, May 24 2005
We cleaned the new house (well, my sister got rid of the worst of the dust) on Saturday,
and I moved the piles from my room up there on Sunday, and did the lighter cleaning.
Between the antibiotics and the dust I was quite bad by then, but things have improved
since. In some ways, my body is now more used to the antibiotics and can cope better,
but the lack of energy is still there. Worse still, my tiredness got me addicted
into computer games again! It is a good thing that I started moving my stuff early
because I just lost almost two weeks of sorting.
Still, I have managed to stay up late and get up early for a few nights, although
that is finally catching up with me. I have reduced my steroids to more normal levels
(15 alternate days, from 25 daily a couple of weeks ago, which has reduced my appetite
from 5 large bowls of cereal then lunch to 4 then most of lunch. And I am increasing
the load in my gym sessions - I have added 10-20 kg over the last couple of months,
and increased the level of the bike and crosstrainer by 2-3 levels. 3 minutes on
the rower is still the same though.
Back to sorting then. Some very dusty books need packing.
Mon, May 16 2005
A week on antibiotics - ug.
After the results of last Tuesday, two good things have developed and one ugly.
The good is that my lungs really did improve - no more uncontrolled coughing (well,
not much), and thinner and better sputum. The second is that my Dad cleaned my room
really well for the first time in ages, following a late night session when I finally
emptied and sorted the contents of my old desk. The ugly development is that taking
two antibiotics has really hit me and I am more tired than usual. Not dramatically,
but it has hit my motivation and I have to push myself to attempt something useful
(even more than usual). Luckily the Azithromycin is only short-term - 3 months!
More good news - going to the gym on Thursday was a huge success, achieving a full
session without any difficulty. Not too unexpected since even the shuttle test showed
I was fit, but satisfying nevertheless. And my room is now back to being filthy
again since I have retrieved five large boxes of my stuff from the attic. It was
clearly noticeable when I went to sleep last night that the dust from them affected
my lungs. Luckily it did not take long to clean them this morning (a quick vacuum
did the trick), and I only have one more box to sort. Then I will have two van-loads
of stuff to take to the new house, and my room will be done, mostly, until the big
push. I keep finding more stuff though, tucked into corners!
Wed, May 11 2005
I went in on Monday for a shuttle test. Between my sleeping in and the physio being
busy it started late but we had just enough time to finish it, and I am very glad
we did. The results showed two important factors: 1) I was much much fitter - my
pulse and sats* returned to normal very quickly; 2) my lungs were not coping very
well with prolonged exercise. I had to stop early, on round 11 not round 15 (out
of 16 I think). This was obviously cause for concern, so we arranged an appointment
the next day.
Even last week I was saying my lungs don't seem to stop producing. The same is true
this week, but the sputum quickly became thicker and greener. I was becoming more
tired (causing late nights and late mornings), and exercise was hard. I was becoming
breathless much more easily, although my limits were still high. Finally, my diabetes
is flaring slightly. If there is any good news, it is that my sinus problems seem
to be going down. Oh, and I am kilo heavier (!).
The obvious cause of the problem is dust, although it is possible my pollen allergies
have kicked in a little with spring in full bloom. I saw the consultant himself
today, plus some extra bodies, who generally agreed with my diagnosis. He was more
than happy for me to start Azithromycin (AZ), the wonder "antibiotic"
with its inexplicable benefits to the lungs. We also were handed my latest sputum
results which showed the first growth of Staphylococcus in a long time; I put forward
my theory about Flucloxacillin (the main anti-Staph antibiotic) - that it contained
similar inexplicable properties to AZ and that my recent downwards turn was a result
of stopping taking it - and he agreed it is a viable theory, although like me he
has not proof.
For the first time in a long time, my home pharmacy has increased, with Fluclox
back, and AZ in. My steroids I put up myself to 25 mg from 10 every other day. And
after some harsh reminders from the physios (but nice harsh reminders!) I am doing
proper sessions of Autogenic Drainage (AD - apparently it means "self-physio").
My aim is to actually hoover and clean my room this week** to get rid of the dust.
It is one day later, and already I feel better. Perhaps it is the antibiotics I
started last night, the extra steroids fighting the reaction - or simply spending
all afternoon in a dust-free environment (work is extra dusty due to the air conditioning
failing - and the cleaners not dusting anything vaguely electrical in an area full
of computers). Either way, more tidying less sorting for the new house this week.
Finally, I talked to the other "bodies" in the room. One was promoting
a trial of Hydro-acoustic therapy, a nice idea of using using sound waves through
water to pummel sputum. They have nice expensive kit installed and are even promising
remuneration. My only two problems with the study are: I am not sure how feasible
it will be for someone really ill; more personally, can I afford the 12 hours required
over 3 weeks? Luckily there is some flexibility over time of day and which 3 weeks
you use, so I will discuss it with my parents and see if we can fit it in.
The other bodies were students (*hello*) who I managed explain my idea of equal
doctor/patient relationships to and promoted this blog to. I love teaching students!
* Oxygen saturation - percentage of recommended Oxygen levels in blood. Anything
below 94/5 is off; anything below 90 is somewhat worrying.
** It was meant to me yesterday, but a 75 minute wait in pharmacy for my drugs put
pay to that, especially since I had a game in the evening. It won't be today either,
since I have been given concert tickets. Yay!
Thu, May 05 2005
This was a very good treatment. Stubborn phlegm is still a problem, and we discussed
making a custom formula for it. However, we concluded in the end that sticking to
a mix of nos. 9 and 11 was fine.
Tue, May 03 2005
2 Month checkup
Yesterday in gym for only the second time I actually felt like walking the 3 flights
of stairs to the men's changing rooms rather than taking the lift. This was backed
up by my lung function today, which if not fantastic (I aim for an FEV1 of 3.3)
was very much an improvement. FEV1 of 2.9 (from 2.5) and FVC of 5.75 (from about
4.9). The FVC is one of my best
ever. My weight at 69.1 is very good if
a couple of kilos down. Unfortunately I did not get my favourite doctor but the
latest junior registrar. Typically he was taken aback by my self-diagnosing, highly
confident and slightly condescending approach*. I pointed out to him that my results,
although better, were still not good and please could I have the option of starting
Azithromycin if I wished. He was naturally skeptical of this self-prescription**
but eventually promised to speak to the consultant and let me know by phone***.
* I try not to be condescending, but it is hard not to be with some junior registrars.
They are not long out of medical school and typically rely on hard statements like,
"If you have symptom X, do Y", which in the world of long term, personalised
conditions is very restrictive.Certainly, anything out of normal baffles them and
I always not normal. I have come across exceptional junior registrars who actually
listen and adapt to the patient; they deserve medals.
** I am waiting for the day I am given a license to prescribe my own medication!
*** This never happened. I found out later that a letter was sent on 5th May, but
it had not arrived by 11th. It is possible it was never CCed to me.