I went to the hospital for a check up yesterday (with a cold), following up from my annual the other month. After putting far too much into the blow (I gave myself a headache and could actually see stars for a couple of seconds, not good ;-)) I had to sit down. The scores on the doors were: FEV1 just under 3.0 ish, FVC was 3.8, so blows were good (but not great), although they have been a lot worse. Weight is now up to 10 Stone 10, 11 stone here I come ;-) My blood sugar levels from the glucose tolerance test came back as 2.5. This is up from the last time (I last did the test 2-3 years ago) when my blood sugar fell to 1.5 ish. Is it possible for insulin performance to improve when you put on weight? I was closer to 10 stone when the last test was done. Anyway, all other annual tests have come back fine, including the one I was most interested in which was my IGe blood level for Aspergillus; it is down to 10 (its lowest for a long time) compared to 90 a few years ago so it looks like I was wrong in self-prescribing myself itraconozole, oops. I swear my lungs have improved though, is this the placebo effect in practice? I had half made up my mind to go on a course of IVs whatever the spirometry results, but to be honest my chest still feels OK, so I decided to give it another month or two. I told them I was worried about my cold going on my chest so they put me on two weeks of Ciprofloxacin, so there you go.
I did remember to bring in my INeb to be re-tuned by the physio (from tidal breathing to the new target inhalation breathing, which apparently means it takes about 5 breaths to dispense) only to find that the laptop which does the reprogramming is buggered, so I'll have to wait another month of two...last time I was in me and the physio had a disagreement about colymycin; she and Mary wanted me to prepare the bottles from scratch every time, whilst I was adamant I could prepare two bottles at a time (one used, one in the fridge.) When she asked me where I had heard this I said I had read it on the CF Trust website. Round one to me ;-) Anyway, today she told me she had consulted with consultant physio Mary Dodd and they said that I had to prepare each bottle from scratch because I was mixing with salbutamol, which meant the mixture is more volatile compared to water/saline. So it looks like even though one of the protagonists is retiring I've still lost the argument by TKO ;-). Joking aside there is a bit of worry in the community about prepared colymyicin because of someone dying of respiratory failure in the USA, so it's understandable everyone is a bit twitchy. Whilst Googling this I also found some cheesy 60s advertisements for pharmaceuticals:
In particular, Colymycin on page 3: "Against the *demoniacal power* of many of the most pathogenic gram negative-bacilli..." You just don't get advertising like that anymore ;-). I also told the doc about my father-in-law having pneumonia, (he's now much better after a couple of days of IV antibiotics) so they took another sputum sample off me for a pneumonia type analysis (micro bacteria?)
Whilst I was there I signed Mary Dodds leaving card. I will be very sorry to see her go; it feels like the end of an era! She has been a great help to me over the years, from when I first started going to the fledgling adult CF Unit at Monsall in 1990, she taught me the active breathing cycle physio and always encouraged me to keep up and do more exercise. More than that she always seemed to care and listen. As the Proff says: "Mary was one of the founders of the original Manchester Unit, and her achievements have been many. It all started when she asked us when we were going to take over the care for adults with Cystic Fibrosis from the paediatricians. In 1982, we started a small CF outpatients in the physiotherapy department of Monsall Hospital, which over the years grew bigger until in 1993 we moved to the first purpose-built adult CF unit at Wythenshawe Hospital. Mary was instrumental in raising the £1.4million for our first CF-dedicated building built at Wythenshawe Hospital, and in acquiring £8million for our second CF building (being constructed this year), which by 2014 will provide care for over 500 patients." Have a great retirement, Mary!
The Manchester CF unit is now being rebuilt, it's being transformed into a mammoth building with a massive outpatients department (with its own pharmacy) and for inpatients 22 dedicated patient rooms, each with their own kitchen and en-suite. One of my friends friends is a psychologist at the Papworth CF unit in Cambrideshire. She was heading over to Manchester this week to see how things were done, so it's good to see us northerners leading the way ;-).
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