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.
Wed, Mar 31 2004
I now have a small cushion that wraps around my seatbelt and by placing it dangerously
close to my neck I could drive (with irritation and residual ache). In the long
term this was not good enough, so I made an appointment in the local bodyshop to
move it, but they found they could not move it without making it illegal (because
of the shape of my van).
Much phoning of the DTI (Dept of Transport and Industry) later, I was contacted
by a very helpful engineer. While he did not have a huge list of ideas, he did mention
using a clip to stop the seatbelt recoil. I will try it soon.
Thu, Mar 25 2004
Acupuncture: heat from heat
Interesting result. I seem to have lots of heat, but not coming from damp heat.
This is not normal for me and we suspect that it is a reaction to the anaesthetic.
I have lots on my lungs, much of it a dark colour (scarily dark since I only just
stopped taking IVs). Pinellia was drying my lungs out.
Advice: take the Magic Bullet, to cool off the heat. Short gap between appointments.
Sat, Mar 20 2004
Ah, what a relief. I get to have my first full-body bath for over two weeks. Luckily
I had my hair cut right back before I went to Birmingham - a clever trick I learnt
I started taking the standard formula Pinellia, recommended as useful for clearing
out phlegm after a course of IVs.
Fri, Mar 19 2004
I went down to the BRI today, and saw the nurses. The needle was taken out (not
a complicated procedure). Notably the sticky strip that held the needle in place
used a less adhesive glue and my hairs were _not_ pulled out. What a relief. I did
have to remove itchy fragments of glue from my chest over the next few days though.
Generally no problems though. The port will need to be flushed (with saline and
heparin) every month.
Fri, Mar 12 2004
I am let out today. Here is a good tip:
always remember your sick note when
leaving the hospital.
Two things noteworthy:
I did not seem to have as much clutter around the sitting room chair this time
round for some reason.
The port sits right underneath where the driver's seatbelt should go. This could
be awkward, especially when the needle is in and so the port is both more obvious
and more fragile.
Thu, Mar 11 2004
Putting in the needle
I spent about 2 hours with a CF nurse. She took blood, checked I was drawing up
my IVs correctly and we went over various questions. The operation was very tidy,
they used glue to hold it together and my skin is died red from the antiseptic.
She removed the bandage and I saw the port for the first time. Because of the placing
of the port, it sticks out a bit further than it might do. The port is just below
the right-hand collarbone on the breastbone, but it is covered by skin. The incision
where they slid it in is about two inches long and is half an inch to the right
of the port.
The needle itself is an evil looking hook about an inch long, but it all goes into
the port not me so it is not a problem. The nurse puts it in, which is a good thing
since I cannot see the port. The needle is attached to a 6 inch extension tube,
which is where I put in the antibiotics. It feels more restrictive than the extensions
from venflons in the arm because you cannot move your arms around so much - the
short extension means they have to be close to the chest when changing syringes.
The pressure seems odd, but then I am not used to using 30ml syringes.
The scariest part is how many things can go wrong with ports. They can leak (filling
the wrong part of me with antibiotic), block (with clotted blood) and become infected
(although luckily this does not affect my lungs). Apparently all of these are quite
rare. But quite variable - the life expectancy of a port is between 1 and 10 years,
which is far too variable for my liking.
Tue, Mar 09 2004
Yes! It is in. A day late, and after much phone ringing by the registrar the port
is in. There seems to be little bruising. I was rather groggy and feeling ... odd
... for a few hours. Luckily my friend R turned up at just the right moment to go
for a wander around the corridors, and he brought malt loaf.
General anaesthetic requires that you are nil-by mouth for 8 hours before the operation.
This is complicated for diabetics since neither a hypo nor a hyper is helpful during
an operation. Unfortunately I am not a normal diabetic so their system does not
work. The idea is that you are given a steady flow of glucose solution and a sliding
scale of insulin to match. This is complicated by the fact that I still produce
my own insulin. Too much insulin on Monday led to a near hypo which led to me eating
sweets to stop it getting worse. Bad timing meant I was called at that exact moment
to theatre... and had to be cancelled because of the sweets.
The following day I came to an agreement on my care. With some stumbling we got
myself stabilised for the operation. I think I went slightly Hypo just at the end
but it was not a problem.
What I did learn was that IVs, or at least these ones, lower my bloodsugars. To
be more precise, they seem to start me producing insulin which is more of an ongoing
thing. From now on I keep a pack of fruit pastilles with me during IVs.
Fri, Mar 05 2004
I was admitted to Birmingham Heartland Hospital. I am due to have a portacath* inserted
in my chest on Monday.
Cipro 750mg bd
Azithromycin 500mg od
Although the aural antibiotics are working, with the operation due Monday we felt
that IVs were safer. My medication then changed to:
Tobramycin 200mg bd (bolus)
Tazocin 6.75g td (bolus)
Lung function is not bad.