I completely agree with you. I was diagnosed at 2 years old, but didn't start taking my meds properly until about
aged 19. I'm now 23. Even now I struggle if someone isn't reminding me, and get annoyed if someone gets on my case too much. There're just so many pills and treatments to do, it gets boring and tiring. I guess it must be even worse if you've just been diagnosed and have all the crap that comes with CF thrown on you all at once.
I know how important the medication is, and your daughter talking all the meds prescribed is very important right now, so the right doses can be figured out for everything, and how many times a day she actually needs to do physio, if she is productive with it or not, and also what type of physio is the best for her, as there are many different types and devices that you can use.
I never know what to say when people aren't taking their meds, as I know how it feels from both ends. I have a brother with CF, I'm always nagging at him, as he takes nothing at all. Including enzymes, meaning he always has belly ache. But at the same time, I have to force down every pill, not because I don't want to be well, but because the meds make me feel sick and some of the repeat on me all day. My nebuliser makes me wheezy and tired. My physio just makes me sleepy, and as I've never had a highly productive chest, it just feels to be a waste of time.
Your daughter will learn though, that these meds and treatments will keep her alive and more well, than when not taking them. Until then, you're doing the right thing by putting pressure on to take her meds. I guess another thing you could do, is explain what each medication does, and why she needs too take it. I know knowledge eventually helped me start taking my meds.
Best of wishes to you and your family, and hopefully CFwill just become a normal part of everyday life soon.
Moderator of the Cystic Fibrosis Forums
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, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
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.
Posted 8/11/2009 10:27 PM (GMT -7)
I agree! Getting settled into a routine is what's best for now.
I've known about my CF for almost 18 years, and I'm just now getting a good solid routine down after an eye-opening infection where my smaller airways were only functioning 10%. It was bad.
But about the weight thing, that is one issue I've never had. I'm 5'7 and I weigh about 135-140, which isn't too bad. When I got sick though, I dropped 15 pounds in just a week, and they wouldn't let me out of the hospital until I gained some back.
Ta ta for now!
"In solitude the mind gains strength and learns to depend on itself"
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