Friday, March 19, 2010

Timecapsule - spot the PWCF ;-)

There is a person with CF on this picture. He/she is 9. It's 1981 or 1982. I think (memory isn't what it used to be). He/She has just learnt how to add fractions. There is no creon, only pancrex. No ciprofloxacin. No nebulised antibiotics. He/she has just been diagnosed, and is trying to get his/her head around the fact that he has to take enzymes with low fat food, skimmed milk(!), no chocolate(!), flucloxacillin and do physio with postural drainage....those were the days :-)

Tuesday, March 9, 2010

Fear, Loathing, and Physio Time (!)

Went to the all-new outpatients to do the hypertonic saline trial with Leslie (the physio) yesterday. I went in my lunch hour hoping it would only take an hour to complete; unfortunately it turned into a bit of an epic visit and I wasn't back in work till 4! Oops. Anyway, since the last trial of Tobi I've been having some problems with my chest; nothing I can put my finger on but I've been producing more mucus on a daily basis, and I've had a growing wheeze which (handily) means the mucus is harder to bring up. This all started at Christmas when I asked on the CF Forum about what was good for bringing up mucus plugs and the majority answer came back as hypertonic saline. Hypertonic saline is a high salt (7%) solution that works (in theory) by drawing more water into your lungs by osmosis, so if you have hard dry plugs or sputum that is in general hard to bring up then it should moisten these and make them easier to bring up.

We did the FEV1 blows before the Hypertonic trial (FEV1 2.75, FVC 3.75) which was down but not too bad, considering. We then nebbed some (preventative) ventolin followed by the hypertonic saline. We then did some physio to clear out whatever the hypertonic brought up. I've got to say, I found this a bit awkward as I actually hadn't done physio with anyone at Manchester since my last inpatients stay (10+ years ago). This meant I had to get over my reluctance of spitting in front of strangers, but the physio techniques she did -all variations on the active breathing cycle that Mary taught me ages ago- were very effective in getting mucus out of the small airways and into the large airways where they can be huffed up. It was a good refresher course in physio techniques; breathing shallow and deep but holding back a forceful huff or cough -which closes the airways- as long as possible. Over the years I'd simplified the technique in my head into slow deep tummy breaths followed by an almighty forceful huff. What she did was more subtle with breathe and hold followed by gentle and then faster exhalations with vibes to try and ease out the mucus. All good stuff, and (hopefully) it's improved my technique quite a lot. Over the past few years I've had very few problems (touch wood) so I'd gotten a bit slack on the physio front. Now I'm determined, for the sake of my long term health, to be more regular with my physio. We'll see how long it lasts ;-)

After the trial my FEV1 blows came back 2.45 which was down 10%, this is classed as a significant drop so Leslie referred it to Jen/Roly, which turned the visit into a full on consultation and they decided to step back from the hypertonic trial until they could get to the bottom of what was causing the wheeze and the possible current infection. I also asked about trialling Spiriva (I'd never tried it), but Roly said it was throwing one too many ingredients into the mix, as they want to figure out what's going on first, so I'm on two weeks oral antibiotics (Cipro and Rifamplicin) before the next appointment, so fingers crossed it all calms down by then.