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
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March 2006
February 2006
January 2006

December 2005
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December 2004
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> 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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Thu, Mar 30 2006
Postdated - after antibiotics

After two weeks on oral antibiotics and very high steroids, my lung function has returned to the best it has been for 2-3 years, at 3.6 / 5.7. Unfortunately, it has become clear to me that the real solution was the steroids not the antibiotics. I have been slowly dropping my steroids, blissfully thinking "wow, no side effects" when all along my ABPA was getting worse and worse. That is, the steroids were restricting my white blood cells which cause a strong asthmatic reaction when they fight a relatively painless fungus called Aspergillus. This reaction was causing me to be strongly short of breath.

However, 20mg of steroids every day has a price, namely my diabetes. Prednisolone raises the blood sugars of anyone who takes them, and in combination with diabetes it sends control down the pan. I was taking 40 units of insulin for many days, and I was still going high.

The good news is that I was deemed just about fit enough to go on our choir trip to Holland, as long as I was careful. After much worry, I had two days to pack and get all my bits together. There was no time, however, to get my European health card (new since my last trip abroad two years ago). I wasn't the only one however!

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Thu, Mar 16 2006
Postdated - To IV or not

My port failed to flush on Friday, so on Monday I went in to run some fluid by it. At the same time they did some lung function tests - 1.7 / 4.5 (from memory, may be slightly out). That is probably the worst lung function I have ever had so I immediately bumped my steroids and went on IVs... except that I had no intravenous access, except through my leg. Technically, a line would have worked, but a few hours down the line it would be killing me and I could not get through 2 weeks of having a new venflon every day.

I had an X-Ray yesterday, which showed that once more the catheter (tube) of my port had been sucked into my jugular. This one was a bit longer, so it had looped up there (hence the failure to flush) and a tail was still sticking down into the correct vein.

So they tried putting some liquid down my port to clear it... no effect. This morning I had my first proper operation that I can remember, going under local anaesthetic while a nice but imperious surgeon shoved a series of very very long wires up through a vein in my groin ("nothing I have never seen before"), carefully past my heart to whichever vein the end of my port was in, all the while using an X-Ray machine to track them all. No success, and I have a tiny bruise on my groin as my only memento. The surgeon did suggest that I have an exceptionally large jugular on that side, although people often have one jugular larger than the other, and that it was just blood flow slowly dragging the catheter.

My port then, and any IVs, will have to wait until the (other) surgeons can take a proper look at my port (and probably put a new one in on the other side). In the mean time, I will take oral antibiotics and continue with the high steroids.

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Posted at:Tue, Apr 18 2006 8 AM