Cystic fibrosis

Cystic fibrosis

Cystic fibrosis

What I find so confusing about cystic fibrosis is all centres seem to have their own beliefs about the regime of treatments !! Obviously chest clearance is paramount across all , it's the regime of antibiotics and the use of I V's and how often!!

I guess it's finding a consultant that has good people skills and who you believe in, who is able to work with you for the best outcomes !!!

My daughter has cystic fibrosis, we have experienced many frustrating times in her 23 yrs, although I m pleased to say her lung function is pretty good 👍👍

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  • Love roller blades. I bought myself some for my fiftieth birthday. I tried them on the shop, I am tall anyway, but the time I put them on I towered over the assistant who seemed to be about twelve years old. "What are you like?" she said. "Just be thankful," I said, "that I am not your mother, or — even, God forbid — your Granny."

    Sadly, my rollerblading days are well and truly over, but I found good home for them with a young friend who has huge feet like me.

    My consultant is a specialist in Adult Cystic Fibrosis. When I first knew that I was amazed, in my day the understanding was that no one survived into adult hood. Wonderful treatments. I think the problem might be because it is all relatively new the treatments are still experimental. So different consultants will have different ideas. And new stuff will be rolling out of the research labs all the time.

    All the best to both of you and the family.

    Kate xxx

  • Hi Fionadcmail

    Sorry to hear you daughter has cystic firbrosis but really pleased she appears to be doing so well.

    You are so right, within the same hospital 2 consultants within the same service can have different expert opinions as to the appropriate care. It is very confusing. I have non cf broncheictasis and this has happened to me all my life and to many other bronchies.

    I guess the hardest part is finding a good consultant with a special interest in cf within a cf unit, who in the main makes what you feel to be good and helpful decisions, who is not only very proactive but who you feel confident and at ease with.

    Not sure where you live as I thought initially you were from the States but then you used the word consultant. Have you tried any of the specific cf forums at all?

    I wish both you and your dear daughter the very best.

    love cx

  • So right Cofdrop. Great to hear from you. I have soooo missed your lighthouse.

    Love and hugs

    Kate xxxx

  • What a lovely looking daughter you have. I know little about cystic fibrosis but just wanted to say hi. i used to roller skate when young, never tried the blades though. Take care Margaret

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