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
November 2005
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September 2005
August 2005
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June 2005
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April 2005
March 2005
February 2005
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December 2004
November 2004
October 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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Tue, Oct 25 2005
To better or worse

It has been a tedious two weeks. Despite some problems with sticky dressings (they put one *under* the port needle without a way to separate them) the needle extremely quickly.

The following day I took my van for a recall-service and an expensive fix of the sliding door. I didn't have time to shave so I went into work with 5 days growth and was amazed at all the people who told me how good it looked on me. Almost two weeks later and I have just had it trimmed by the barber since people's reactions mean that it is here to stay.

I saw the Osteopath the day after that, who said I was much much better, which was nice.

Unfortunately things went downhill from there. Days of IVs buggered up my sleeping patterns plus I was exhausted by the whole process. I managed to get to the gym once, but generally I suffered from lack of sleep, slight loss of weight and a severe case of being too tired to do physio. I did my lung function last Wednesday and it was barely 2.25/4.05. Even if the machine is reading low, those are bad results just out of a course of IVs.

I started perking up over the weekend and having lazily only taken some Prosperous Farmer (if anything) for the previous week I took some number 9 with a little no.11. No problems there, until yesterday morning I woke up coughing up a mouthful of blood. I coughed up small bits more over yesterday and today. I have never coughed up this amount and is apparently a sign of Haemetosois. While not terrible in itself it is a sign of infection.

This is the confusing part - while I have a lot of sputum, high blood sugars and haemetosis, my sputum is actually not a bad colour. Still, assuming my lung function is still down tomorrow I will probably wander across to the clinic and see what they suggest. My hunch is that my lungs are just weak after the anaesthetic and my supervisor reminded me that last time I was fine to begin with before the trouble set in. Maybe I did not survive the anaesthetic as well as I hoped.

Meanwhile I am taking the latest anti-heat tincture which is being very effective at clearing my lungs. Early nights and proper treatment (at last) are also helping.

The final part of this entry concerns a trial I am helping in. They put me in a leaking sit-in bath, fill it up then send soundwaves through the water to vibrate the air in the lungs. At the moment I am not convinced by it, although it is quite interesting. Even if it works, it looks incredibly expensive for what it does and not particularly beyond the bounds of something like DNAse.

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Wed, Oct 12 2005
Washing the wound

The port needle and all the various dressing were removed at 10.30 this morning - the nurse came and went within 10 minutes. For some reason they had put a sticky thing over the wound but under the port needle which caused a few problems but nothing serious.

I am left with a square border of sticky stuff which I will slowly be able to rub off in the next few days, a thin inch-long scar and a tiny bump where the port is. This one is definitely much better than the last port!

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Last day of IVs

I don't often post at 2 in the morning, but I have just finished putting in my penultimate dose of IVs and I am having a conversation online about how suitable my blog is for the squeamish (my friends tell me that nothing in it is particularly horrible, although I know plenty of people who would disagree).

Other than lack of computer access, my system for administering IVs worked well. As usual I have had to catch up on sleep during the day (the time limits on doses - between 7-9 hours apart - means I always seem to be up at obscure times, and so lose sleep). My skin is itching like mad around the port, and I cannot wait to have the covering removed so I can clean where the sticky stuff was.

I have unfortunately been very undisciplined outside the confines of the hospital, losing both physio and reading time to computers and general lethargy. I went for my appointment with the physio on Monday and had to explain how my physio had gone from very organised in hospital to almost negligible out :( In fairness, I had been very tired and unable to concentrate for a few days, but it is still painfully true. We had a good session and everything still was clear - but the lesson that I need to keep doing regular physio sunk in. Now all I need to do is put it into practice.

Also on Monday the nurse came round to remove the stitches from my face, where the cyst had been. That was good too, although I cannot see that particular spot meaning I still rub it, trying to work out what is happening. I am so bad with wounds.

Finally, I arranged with the physio to go to their gym next week to get a CF-orientated routine from them. Oh, and instead of a restful Thursday morning, I foolishly arranged to have a safety recall fix on my van (and then I am back to work in the afternoon; maybe this afternoon too, depending how I am feeling - perhaps I ought to get some sleep).

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Sat, Oct 08 2005
Port out, Port in (cont.)

Start here.

I ran out of time on Wednesday so here are a few more notes on the operation. There has been a delay since I put my IV bits on a tray above my computer (normally housing a scanner) and leaving the computer on for any time gets them warm (not a good thing).

I had a lot of worry over the anaesthetic - last time left my lungs down for 6 weeks or more. However the anesthetist who checked me over (just a few minutes before I was carted over to theatre, bed and all) saw no reason why this should be. Subsequently I have heard a rumour that drinking water in the fasting period before an op. may leave you more vulnerable to side effects. My mother also wanted to know "if he is used to anesthetising people with CF". This actually led to an interesting answer: the anesthetist suggested that Birmingham was large enough to have a dedicated thoracic team, who might therefore regularly treat CF patients; whereas Bristol has a cardio-thoracic team, which CF does not fall under for surgery - we are handled by the general surgical team.

So far I have not noticed any side affects of the anaesthetics, although my ABPA played up this morning (but I have been forgetting to take my steroids since I have been falling asleep immediately after breakfast). Despite the pincushion effect, I am not actually in any pain. In fact the only awkward states are the sticky dressing on the port-wound which restricts the movement of my right arm, and the extra need for sleep caused by antibiotics.

Meanwhile, this is first course of IVs in the new house, so I have had to develop a new system for keeping all the equipment handy. It has been decreed that no more will I scatter my bits in the living room (in fairness there is little room to do so). So everything is in my room. As mentioned, a lot of stuff (saline, water, needles, alcohol gel etc) is kept on the shelf above my computer. Spares are just a long a bit, and the syringes are still kept all the way across the room. My friend's stuff will probably going soon so next time they can live in that space, just behind my chair. Meanwhile the sharps box is under the tray - it cannot be more convenient without preventing access to the chair - and the bin is in its normal place behind me. It works quite well, after a fashion.

Thanks to physio, by the time I left hospital I was producing comparatively little sputum and it was certainly a good colour. Because of this, I was only given 10 days of antibiotics which means it is all over on Wednesday. I go for some physio on Monday, which gives us a chance to check that I really only need 10 days, and otherwise I have my port removed (and probably my stitches) on Wednesday.

There is a final subject to be mentioned - my Chinese herbs. My acupuncturist, as mentioned previously, brewed up a special cooling tincture that had an extra something to beef up the liver after anaesthetics. I took this many days in hospital - to the knowledge of the CF team. I didn't take it the night before the operation because I was already dehydrated and the herbs would make it worse. I didn't take it the night after because I was too shattered. However, I did take it on the Wednesday I was discharged - and it had a fairly immediate effect, so by the time I did physio in the afternoon my sputum was well lubricated. The herbs are incredibly good at rehydrating dry sputum and I will continue take them as long as needed.

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Wed, Oct 05 2005
Port out, port in

I type this as a machine whirrs away dripping antibiotic into my veins. There are distracting smells in the air because I spilt some in order to get it started, and because I haven't been able to wash properly for four days.

The last blog entry was written just before I went into hospital, just as I was regaining my sanity* back after a bad spell. On Saturday I managed to not only pack for hospital in half an hour (albeit with help) I also managed some room-tidying, which boded well. I arrived in hospital on time at 11am, got booked in by registrar who quite happily accepted he knew nothing about CF. A nurse put a venflon in my left wrist and I had my first IVs at 3 in the afternoon.

At this point I will mention the food, since it first reared its head then. The first day in I expected random food since you are meant to book it the day before; however, I was so tied up that I didn't get round to filling in Sunday's food until too late. So Sunday's was random, Monday was what I ordered, I missed Tuesday and they didn't have my order (whatever it was) today (Wednesday). The food is much nicer than any other hospital food I have tasted... but the portions are aimed at old ladies! I got extra food from the Bistro, but sandwiches don't cut it. The worst offence though was that they only gave one mid-size bowl of cereal in the morning (no more for whatever reason) and a limited amount of toast. Sorry, sandwiches don't cut it. Between two weeks ago and yesterday I appear to have lost 4kg - how much was lost in hospital??

On the positive, the nursing staff and even the domestic staff were top quality. Why? A lot of them were immigrants of some sort, and they are normally more skilled and intelligent than their domestic equivalents. The Philippino nurses had already acquired "Brissel" traits through their often thick native accents :D . I should balance this by pointing to good British nurses too who refused to be beaten by my lousy veins.

I had five venflons put in over four days. The first lasted 3 doses, the second 4; the third - in the hand - died before it was used (lines in my hand have always died quickly); however I asked the young doctor** who put in the third to find a spot for the fourth, which he found inside my left elbow with a cry of "What am I doing?", and this one along with one near my right elbow were canulated at 4.30 Tuesday morning. I refused to put antibiotic through these - a decision supported without comment by all the staff! These two venflons then lasted until after my operation - although only just.

Does it look like I was a pincushion? My usual spot inside my right elbow obliged blood for tests as usual, while my fingers were pricked well and truly for blood sugar tests (my home device is set to the minimum depth - the hospital finger pricks probably go to maximum!). I still have swellings on my wrists from the first two venflons, and one from the last one on my right arm - but these will die down peacefully.

Emotionally, the first three and a bit days were bothered by having more questions than answers. We wanted to avoid surgical and anesthetical (?) complications, but I didn't speak to a surgeon until 11am yesterday, and the anesthetist 1pm. Even my consultant (unusually) only payed a flying visit on Monday morning. So flying that I forgot to ask one of the most important questions - to use the sliding scale or not.

The sliding scale is an idea that you give a continuous but small dose of insulin, combined with a continuous dose of dextrose (sugar) solution. If balanced correctly they should keep your blood sugars stable, while staving off some other condition caused by lack of insulin. If you head too high, they decrease the amount of dextrose they give, if too low they decrease the insulin; the peculiarity of the system comes when they alternate doubling and halving your insulin dose... that can never balance!

18 months ago, the sliding scale caused me to go hypo, preventing the operation that day; I opted to go without the scale the following day and that worked without problems. However, the extra complication this time were firstly that they had a better system, and secondly that my diabetes is not so controlled. I asked everyone what they thought, and in the end I had a discussion on Monday evening with the man putting my line in, a two months qualified doctor. His neutral, quizzical approach allowed me to make up my mind, to go with the scale.

This was probably the correct decision, although my promise that "if I use the sliding scale, something will almost certainly go wrong" did come true in a fashion. When my bed was transported to theatre, they put the saline drip, insulin feed and dextrose drip on the bed and turned them off... except that I only noticed halfway across that the insulin was still on. I spotted my looming hypo in pre-op, and I went through the operation with a low dose of dextrose - but no insulin. So much for the sliding scale! Also, my desire to retain control as long as possible paid off, since I could give sensible advice to the (slightly) bemused anaesthetic team.

I went under anaesthetic at almost exactly 2pm on Tuesday 4th October, waking up (for the second time) at 5pm. I was under for a comparatively long time, and took a few hours to recover from anaesthetic. Two lovely physios happened to be in post-op when I woke and I asked them to stay until I balance my needs for Oxygen, water and coughing. I had difficulty coughing sputum up - it didn't want to quite leave my throat and for a while that bothered me until I got over it. It annoyed me that the young bloke opposite me in post-op seemed to recover almost immediately!

My parents arrived at the ward not long after I did, and after managing to get my mum to slow down I eventually coughed and drank until I was comfortable enough to eat a yoghurt. I had my Dad head down to the Bistro to get a decent sandwich (the not-so-attractive ones we got from the ward ended in his stomach this evening!).

I recommend that the squeamish stop reading at this point!

The nurses were busy, poor things, but by 9.20 they finally disconnected my drips (freedom!!) and put in my first IV through the new port. By this morning, I was full of bounce and with all indications that I was going to leave I cleaned up and even danced with joy. Luckily the nurses didn't notice this time. Physios came and with their help I started expanding my chest properly (the port, stitched hole and sticky dressings cause unnatural resistance). By the afternoon, I was mostly clearing clear sputum with only vague colouration, or darker stripes. My departure wasn't confirmed until after 2pm, but the system worked (or rather, it was worked by the CF nurse) and I got out smartly on 5.30, home at 6pm.

On the operation itself I have no recollection (duh!), but I have pieced together some of what happened. I was scared by the sudden arrival by a pair of evil twins... er lovely physiotherapists in the pre-op room. Of course before long they were dutifully laughing at my poor jokes. It turns out they routinely try to prod CF patients while they are vulnerable under anaesthetic. With the Oxygen on, they can pump my lungs to maximum and do physio. They said they could feel it moving under their hands (lovely!) although they it was too dry to get most of it up. They also said I was a better patient when I was asleep - and I didn't know whether I should believe them!

(Incidently, this problem of dryness was another theme of this stay. The ward was dry, and I was dry from before. I was drinking lots of water, and when I was nil by mouth before the operation they shoved saline into me at triple time (still not that fast really, but 400ml in a few hours is still significant!).)

Once the physios were done, the surgeon probably opened up my old entry wound (on my breast plate near my right shoulder), disconnected the catheter from the end piece of the portacath and passed a wire along it to see what was happening. I have to conclude that he found that the vein had not clotted or "tissued", meaning he felt he could use the same site as I requested. For the record, in prior discussions he mentioned the increase risk of port infection.

He then put in a new "slimline" port - it is meant to be less protruding - less obvious! - although I will only be able to see for myself when the IVs are finished. The notes and X-ray indicate that he removed a small amount of breast bone to send the catheter down under the bone and into the vein that way (rather than right, round a rib as before). It then follows the vein right close to the heart (I will need to look at the X-ray in a clearer state of mind to see how close).

Finally, I woke up and apparently coughed up a mug-full of sputum. I don't remember that! There was another CF patient also having a replacement portacath in who heard me cough while he was in pre-op. Poor lad!

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Posted at:Tue, Nov 01 2005 8 AM