Hi Foin, welcome to the forum!!
You're living in the UK I take it? Just the mention of the NHS, we're the only ones who call it that I think, though I may of course be wrong.
What sort of CF medications aren't available? I'm thinking most are available on the NHS in the UK, and all CF medications are available from a CF centre. Some GP's can be awkward gits, and sometimes they will only give you meds if you really really need them, but they can still be collected from a CF centre is this is the case.
I know like our CF centre at the minute are raising money for a new unit. The CF Trust were supposed to pay for some of this, and the NHS the rest, but I think all have pulled out, so now they have to raise funds themselves. This can sometimes mean cutbacks on none-urgent meds-but currently our unit is actually some how ok (start of financial year perhaps, or maybe they are getting close to the target, or patients health has dropped overall on the unit and they have finally come to realise that a new ward would be amazing, but patients still need care in this time.)
I don't wish to scare you, but if I don't put it here, then you'll only read it elsewhere, as they use these stats in all of the advertising. CF is known as life-threatening and current life expectancy is about
40. Though about
10 years ago, we were looking at an expectancy of 21, so things are improving greatly. For a 10 year old today, their expectancy is even better, the younger people with CF are at this present time, the better their chances of leading a normalish, longer life is.
I hope this helps some, and provides you with some answers that you need. If you need more than this, then post. We're happy to offer you with the support you require, and maybe able to provide some answers to things you may be questioning.
I have just last year met 2 of my brothers. We knew they existed, but they didn't know about
us, I hunted them down as I thought they needed to know. I'm still worried how much of CF to let on to them, I don't want to scare them, they are 8+10 years younger than me. I also have another brother with CF and a sister without.
Hope you are well
Gemma
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Folic Acid, Adcal-D3. I use PEP and Flutter device as my physio as well as the occasional ABC when bored. Had a Port-a-cath fitted on chest wall since Nov 04
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.
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