hi i'm new and i've got some questions for you all :)

 i, i'm new to these boards, i left my first post last night, but decided to delete it as i've figured that one out myself. i'm wondering what kind of treatment you all do, and how much exercise and physio and what are your lung functions generally like, and how good are you at adhering to your treatment regime? i often go against my doctors advice, and i guess i'm just interested in finding out how people do who follow it exactly. i'm also interested to find out if you modify your diet at all? i think the best thing you can do when you have cf is to find a sport you love anyway, and keep playing even when you're really ill to clear your chest. how well do you get on with your doctors? and how do they react when you have questions, or a different opinion to theirs? and do you take antidepressants? hmm that's a lot of questions already! =) hope you're all keeping well

Bella  

Post Edited (berrybella) : 11/4/2009 10:41:52 AM (GMT-7)

Phew, sorry about that, I'm here now.

Well, welcome to the forums! Sorry bout last night, I was shattered and knew I had to check forums somehow, so did but then realised I couldn't read much past first lines of text-then I lost all understanding of what was being said.

Right, so your first question was about compliance with treatment:
Well, I'm pretty compliant unless it's something that's making any extra symptoms. As an example, just recently, I've had to stop using my PEP as physio and Ineb as nebuliser. I think it's because both are sort of using a pressure system, and for whatever reason that pressure is suddenly making me nauseas. It doesn't appear to be Tobi that's doing it, but the devices themselves which is a pain. I've just got a Flutter device for physio, about 2 days ago. This uses vibrations rather than pressure and it's not making me feel sick. Not doing any nebulisers right now, as I don't have another device to try. I cannot take Colomycin as it makes my tongue swell and go numb and I go all itchy all over-so have to have Tobi as my neb med.

Generally my tablets I take them in 2 lots, morning and night, plus Creon. The Creon I try to remember to take at the start of every meal. Sometimes I forget, so take it after a few mouthfuls of food when I remember. Morning tablets, I take whenever I get up and night time meds I take whenever I go to bed. There's nothing in them that means I can't take them too close together or something, so this is how I do them. I try to set a more rigid routine though when I'm on Ciprofloxacin, and am extremely strict with IV's.

Next question:
I don't do much exercise as I have another condition in my muscles which makes it very painful and I tire really really quickly.

My lung functions are at a great level at 80+%. Dunno how, as I am always getting infections, and breathless a lot. It's not asthma as that would make my LF decline even faster. I think it's to do with playing trumpet as a kid not sure. Unfortunately it's not good when I'm struggling to breathe, coughing up thick goo, have chest pain, and the hospital won't believe I'm feeling so bad as my LF is still in 70's or 80's%.

They've done it this time-"right, we'll see you in 6 weeks", when I'm coughing up plugs of mucus and struggling to keep going at my normal pace (slowing down isn't an option for me).

I do not get on well with my doctors at all. Infact about 99% of the time, in the last 2 years, I've left the unit, got home and just cried. They do not accept different opinions, and I'm pretty much going back into a "don't care, do what you like" attitude again as I am SO sick of them and having to fight at every corner, when I'm feeling rubbish.

I take antidepressants, and I've been seeing a psychiatrist for 5 years and a counselor at college for 6 months.

OK, so onto diet now:
I eat as many high calorie things as I can. If I can't eat meals for whatever reason because I'm just not hungry, I nibble all day on crisps and chocolate. When I can eat meals, I make them good meals, with proper meat (like chicken or beef or kangaroo.....yes, I said kangaroo lol, nothing processed). I have veg of some kind and potatoes of some kind. I'm not into greasy foods, but fatty foods are good.
I'm not good with managing my salt in food, I don't like too much, so manage my salt levels with Slow-Sodium tablets in summer.

Oh yeah, and I have Creon everywhere!! In my bag, in my coat pockets......If for whatever reason I forget them, I have spare at my usual haunts, like my mum's house, my mother-in-laws house and my social club. Same with painkillers, antisickness tablets and Ventolin.

Lol, hope this has answered some of your questions!!

Gem:D

it is a small world :) you're lucky to not get underweight that often, i'm constantly struggling with it. i know what you mean about never being happy with your weight and yeh i blame the docs too! always weighing us, always judging ;) i'm glad to hear you're happier these days, i get depressed sometimes too. never found a great counsellor, but fortunate to have a very patient best friend, who listens to everything :) why do you think your hospital would be so concerned about you talking about your hospital experiences? is it because you've had problems and they'd want to talk to your counsellor to try and understand you better? yeh brazil nut milk is good, i've been mixing it with carrot juice (for vitamin a), and i've had a marathon session of sushi making today too :) take care
Bella