Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog


August 2006
July 2006
June 2006
May 2006
April 2006
March 2006
February 2006
January 2006

December 2005
November 2005
October 2005
September 2005
August 2005
July 2005
June 2005
May 2005
April 2005
March 2005
February 2005
January 2005

December 2004
November 2004
October 2004
September 2004
August 2004
July 2004
June 2004
May 2004
April 2004
March 2004


> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
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.

Visit the CF Trust

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Wed, Mar 31 2004
The seatbelt

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.

by Me  Comments

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.

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Sat, Mar 20 2004
First Bath

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 ages ago.

I started taking the standard formula Pinellia, recommended as useful for clearing out phlegm after a course of IVs.

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Fri, Mar 19 2004
Needle out

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.

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Fri, Mar 12 2004
Driving home

I am let out today. Here is a good tip: always remember your sick note when leaving the hospital.

Two things noteworthy:

  1. I did not seem to have as much clutter around the sitting room chair this time round for some reason.
  2. 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.

by Me  Comments

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.

by Me  Comments

Tue, Mar 09 2004
Port inserted

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.

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Fri, Mar 05 2004

I was admitted to Birmingham Heartland Hospital. I am due to have a portacath* inserted in my chest on Monday.

Current medication:

  • 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.

(test line)

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Posted at:Mon, Jul 04 2005 11 PM