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

Blog software

WWW This blog
Thu, May 25 2006
From work

I have more than laziness keeping me from updating my blog regularly now: the wireless kit provided by our ISP has died. We are working through the stuff needed to move ISPs (including getting my parents their own domain, publicising their new email address and buying our own wireless router). I also succumbed to joining the church council: something I always planned to do, but not necessarily now; however it seems they needed somebody who was prepared to poke people. I would love to blog all that stuff too, but it would require a huge number of personal comments!

My insulin changed over nicely. I now take 15 – 6 – 15 units of short acting insulin with my meals, and one dose of long acting insulin (I am meant to take it at the same time each night, but it ends up any time between 11pm – 2am). The pen for the long acting is slightly annoying since if you dial up too much insulin, you can’t dial back. Surprisingly, I have not had many problems rotating where I stab it into my stomach, partly I suppose because I am using a wider area than before. During my time without exercise I developed quite a paunch, so perhaps that helped!

I am not as tired as I was. Indeed I started going back to the gym last week, and walked into work on Monday (with barely a problem). Unfortunately I am still short of breath and when they took a lung function I was back down to 1.7 / 4.5ish. I have spent the last month trying to get a prescription for Itraconazole – an antifungicide that might hit aspergillus. The consultant is incredibly cagey about it: it can have potential side effects (and steroids don’t??), and research shows that it is somewhat useful in younger people otherwise not that useful for other CF patients. My experience does not say otherwise, but since the Aspergilosis seems to be prime factor in my lungs’ decline at the moment I would like to try something that is not even more steroids. It just annoys me that they would hold back on this when they find it so easy to prescribe strong antibiotics.

In fairness to them, they are not saying I cannot have it, just that they want to see some blood results first – and for whatever reason they have twice failed to get a result on my IGE (no, I have not idea what it stands for, but it relates in some way to the Aspergilosis (ABPA)).

This is in the same week that a bunch of doctors write to trusts declaring that the NHS should stop funding complementary therapies. I spend £60-£100 per month on complementary therapies, which probably saves the NHS at least one course of IVs a year, at a cost of £1-2000 (for the drugs alone). No doubt I would have to spend more time in hospital as well, costing several hundred pounds a day (at a guess). There is also DNAse, the most expensive drug we take, which I rarely use at the moment due to my other therapies. I imagine that I save the NHS at least three or four times the cost of my complementary therapies yet they won’t fund it.

The majority of complementary therapies that I have seen are incredibly cheap compared to the costs of antibiotics and other destructive "mainstream" medicines. If even 25% of treatments did what they were meant to do, I still think the NHS is probably saving money.

Back to me then, briefly. Apart from ABPA issues, my lungs are producing thick green sputum and my parents tell me that I am coughing in the night (but because the time I go to sleep is in the middle of their night I cannot be sure that their "middle of the night" is not when I am coughing just before I go to bed). When the bloods came back from my clinic appointment at the beginning of the month, my CRP (some sort of antibody level) was 11, barely above normal (10). However, prolonged thick sputum from the ABPA could have given it space to grow.

I am, however, seeing the acupuncturist tonight so hopefully he can clarify.

Again, going back to my clinic appointment, the same day I changed my insulin over I went for an hour’s reflexology (since my sister recommended it as quite relaxing and purifying… I hoped it could remove the anaesthetic!). Unfortunately she rather overdid things I was absolutely exhausted the next day, and for the two days after that I had strange, mild pins-and-needles sensations in my hands and feet. I was so concerned that I took an afternoon off work and rang the diabetes people in case it was that. They slowly receded over a couple of days, and I am not going back to reflexology – if nothing else, she did not treat anything –important- that Osteopathy could not treat, and the latter would be more focussed.

The other strange sensation that week was not going hypo at all. The new regime is much much more controllable than the old and I have only had one hypo since that day. I am just not used to it. (For the record, I do not regret keeping my old regime as long as I did: it was one less thing to worry about.)

Finally… I have seen a variety of osteopaths, mainly because my usual one is very popular. Unfortunately I have to break it to him that his wife, who I saw for the first and last time last week, did not do a very good job on me. *sigh*.

by Picks-at-Flies  Comments

Fri, May 05 2006
After the Op.

The day I wrote the last update I went into hospital for my 3rd portacath operation, which I meant to chronicle earlier but my concentration for writing still hasn't been there. I went in Tuesday night, was seen by the surgeons late Wednesday and operated on late Thursday. Through my usual firmness and reason I convinced everyone NOT to give me the sliding scale - the combination drip of sugar and insulin that inevitably leaves me going hypo on the way to the operation - and got away with it, just, because of the vast amount of homemade heavy fruitcake I ate at midnight (before I started fasting).

I did not manage to convince them to go local, but I got a lot further than before because they actually went into a lot more detail about why they didn't do locals. The local goes into the spine, I think they said (hey, it was moments before I went under!). Unfortunately it only lasts for so long, and the patient wriggles, there is clearly some agitation and if it doesn't want to go properly it may run out before the operation is over. In short, the surgeons find it harder work and they normally get asked to do an emergency anaesthetic, which is bad. The latter, ultimately, I can live with although when someone is poking around on your insides I can't help feeling you want to make them as comfortable as possible. However, having gone through one operation without anaesthetic I would hope I would handle it better the next time.

As I said before, the catheter - tube - part of the portacath was being drawn into the jugular on the right, and the most plausible explanation I have been given is that I have a large jugular on that side and it is just being drawn up. Because of this, the surgeon decided to take out the portacath on the right and put one in on the left. However, when asked "Are you confident that this will solve the problem?" he could only answer, "We'll see." While I cannot fault him for being truthful, it did not make me feel any better! In 3-6 months I will coerce the doctors into letting me have an x-ray of the new site (I doubt they will require much coercion) to see if this one too is kinking. I also agreed with them that they would not draw blood from it (or even try to) since I have often felt that this drawing back somehow added to the misbehaviour of the previous ports.

The operation itself went smoothly, with two very tidy cuts (and a tiny scratch which they used to poke the catheter through). A week later and all the oozing had stopped and the dressing came off. I missed 6 days of work in total. The only problem is my lungs, which are still suffering from the dryness caused by the anaesthetic, ABPA and still slightly crazy diabetes (even if I am "only" taking 28-30 units of insulin). The final piece of the puzzle is getting my sleep patterns back to early nights, and then getting back to Masters work.

I am also seeing the diabetes people on Monday to get a new regime of insulin (4 doses/day rather than 2), which will almost certainly mean contacting the DVLA about my change in condition. My mother worries that they will be looking at me more closely from now on, but it is better than them revoking my license after they suddenly discovered I hadn't informed them at all.

by Picks-at-Flies  Comments

Posted at:Wed, Jul 05 2006 12 AM