Monday, May 09, 2011

CF Week

From the 8th to the 14th of May is Cystic Fibrosis Week run by the CF Trust. As part of the week they have set a target of getting 10,000 more friends/followers on Facebook and Twitter in the hope of raising awareness about CF and reaching new people. They also want people with CF to post/blog/tweet about their life with CF, so this is my blog post.  Here are some basic facts about CF (people who have read my blog before will probably know them already but it doesn't hurt to read them again!)-
  • Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.
  • Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.
  • People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.
  • During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.
  • Only half of those living with Cystic Fibrosis are likely to live past their late 30s.
  • There is no cure for Cystic Fibrosis.
  •  Money raised during Cystic Fibrosis Week will help the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of Cystic Fibrosis. It will help the Cystic Fibrosis Trust improve the care of people with CF, and will help provide direct support for people with Cystic Fibrosis and their families.

On a more personal level, I thought I would post a copy of my repeat prescription, which runs to four pages these days.  From this rather long list can see just how many drugs I actually take or use every day, and this is on a good day...

Creon 25000
These are enzymes to digest the fat in my food. As my pancreas is screwed I don't get them naturally. I take 6 pills with an average meal and 2 with snacks, so it totals about 24 a day.
Azithromycin 250mg
One pill a day, antibiotic and gunk reducer!
Citalopram 20mg
Antidepressant-pretty self explanatory, but without it I am an emotional wreck.
Itraconazole 100mg
Two pills twice a day. Antibiotic fungicide to combat Aspergillis (nasty fungus) growing in my lungs
Flucloxacillin 500mg
One pill twice a day. Antibiotic to damp down the bugs in my lungs.
Carbocisteine 375mg
Two pills twice a day. Not sure of the technical name for this but it thins the gunk in my lungs making it easier to cough up.
Omeprazole 40mg
one pill twice a day. Strong antacid for digestive problems caused partly by CF and partly by all the other drugs...

Inhalors and Nebulisors
Qvar 100micrograms
Two-four puffs twice a day depending how chest is. Steroid to combat inflammation of my lungs
Tiotropium 18micrograms
One puff a day.  Bronchiodialator acts on the small airways of my lungs to keep them open.
Serevent 25 Micrograms
Two puffs twice a day.  Brochiodialator (like ventolin but stronger)
Ventolin 100micrograms
As needed when I get wheezy.
Colistimethate Sodium 2 million units
Nebulisor solution twice a day. Inhaled antibiotic has to diluted by me with 2ml of sterile saline per vial. Used for a month in turn with-
Tobramycin Nebuliser Solution 300mg
Nebulised twice a day for a month-tastes awful but works.
Mucoclear Solution 6% hypertonic saline
Nebulised salt solution to thin lung mucus, once a day. This is just soooooo salty-but it does work so I do it...
Salbutamol Nebulisor solution 2.5mg
Nebulised ventolin used once a day to open up lung airways to allow the hypertonnic saline to penetrate lungs as much as possible.

Diabetes treatments
Novarapid Penfill cartridges
I take insulin with food, the amount I take is dependant on the carbohydrate content of what I am eating. This means I have to this out before I inject myself... this is annoying!
Aviva Test Strips
Strips for my blood sugar monitor
Multiclix lancets
Needle for the stabbing device so I can use said monitor.
Microfine needles 4mm
Needles for injecting insulin-they really are tiny so it doesn't hurt-unless you do it wrong and hit muscle...

So that's my everyday medical regime. If I want to go away for a weekend all this stuff and paraphernalia has to come with me... including the nebulisor and all its components-it all takes up a lot of suitcase space! Not to mention the fact that if I am ill then I will have to take intravenous drugs and that adds a whole new dimension to the regime, as most of the antibiotics come in powder form so have to be reconstituted by me. The number of needles, bottles of saline, water and syringes that fill my house during IVs is huge! And that is not including the antibiotics themselves and the hepsal flush (dilute heparin solution) that you have to do after each dose to keep the line open. I really am a walking pharmacy!

This regime is my life-every damn day, and I know that the regime will not get better, that my lungs will not get significantly better and that I will always have to take these drugs. The individual doses or pills may change from time to time but this is the way I have to live if I want to go on living for a reasonable length of time.  Please think about supporting CF Week -you can join on Facebook here. Or there is more info about it here.
(I think that this info is all correct and that I've got the reasons I take the various drugs right-if you know that I've spelt a drug name wrong or got the explanation of what it is wrong, don't make a smart arse comment please. I take them and that's what matters.)

Sunday, May 08, 2011

Bad Blogger!

I have not been updating my blog as often as I should have been... It was a New Years Resolution that I would update it at least a couple of times every month and also blog more of my hats, and yet I've managed no posts for the six weeks-oh dear.  I never have been very good with New Years Resolutions!

I've had this half hat finished for several weeks now, but have only just got round to photographing it. first there was all the schmozole of Papworth and the port and the two weeks of IVs, then I went on holiday (hurray- I really needed it!) and then I spent the rest of the time catching up on work and getting a bride finished.  So finally I have got some nice pics of it in the lovely sunshine-

It was inspired by several hats that are pictured in a catalogue of vintage patterns that I got from Amazon a couple of years ago. I blocked the buckram base over a standard dome crown block, then having mulled it, I covered it with pink satin and a layer of black veiling. The edge is black satin bias binding. The decoration is rather more 1920s than 1950s, but I like it! Its a black ostrich feather pom pom that I made from an old feather I used in a show years ago, and to hide the base of the feathers I covered it with more black satin and lots of jet swarovski crystals.
Close up of feather pom pom