two questions

[princessjdc]

ok the first question is about pfts, how can you get them to be better or higher? I already take pulmozyme, Advair, and Combivent and 28\on 28\off of Tobi. so I was just wondering if there was any other way to get them higher.


Second question is how many poeple has had there lung collapse, I never had but I was just wondering if it happens a lot or if it is a rare thing that happens.

 

[luke]

Jennifer,

PFT's can get better but it takes hard work and then that might not even do it. I would encourage you to exercise as much as you can tolerate along with following your medication regimen religiously. I am one of those that believe exercise is the key to our longevity. As for your meds, one medicine that did increase my PFT's was zithromax. Some of us take it with good results other have not had good results. My FEV1 went up 5% in the first 6 months of my taking it.

Sometimes the best we can hope for is not for them to get "better" but maybe stopping them from getting worse. So don't be discouraged if they don't go up, just work on keeping them from going down.

Luke

 

[spicyone18]

I dont know about improving PFT's but I will coment on the lung colapsing, that happened to me last year. I dont know how common it is but it painful and scary and I hope it never happens again!

 

[wallflower]

I have never had a lung collapse, but my pfts have gone up by doing extra chest therapy. I use the vest, so I use it more than I used to (without the neb). Anytype of exercise is also great. I think the hard part is that meds help make us feel better and fight infection, but we still need to find ways to get that extra mucus out of our lungs.

That mucus plays a big part in pfts, so experiment with what works for you to keep it coming out. I agree with Luke that the most important thing is to try not to fall lower than you are now. Sometimes too much mucus in one place too long causes scarring, and you'll never get that part of your lung back.

Good luck! Let us know if you go up!

Barb 33 w/cf

 

[princessjdc]

Thanks for your replys, I do my treatments everyday I dont miss any except for once in a blue moon Ill skip my second vest, but I do try and stay as active as possible, the only problem with me is I dont cough the mucus up. I get lose coughs where it sounds like im moving something in my lungs but only once in a while I can cough that goup up. also my doc says that if I only lose 1% of my lung function a year, then I should live to be about 60-70 years old, but thats kinda hard, I mean Im going to have to work hard at keeping my pfts up and try not to lose more than 1%. Im going to try and make a goal to lose 0% of lung function a year, if possible. I was just hoping that maybe there could be something to bring the pfts up . I guess Im doing everything that I can, except maybe I can get a little more exersice in. Monday I should start walking again with my mother-in-law.

 

[anonymous]

Don't listen to predictions of how long you will live, please - how can anyone honestly know that? Keep fighting. and like Luke said, exercise, exercise, exercise.

 

[Mockingbird]

The vest doesn't work for everyone; if you find it's not being effective, ask your doctor about other options. =-) You also don't have to do just one kind of CPT; there are lots out there. =-)

 

[princessjdc]

Ive tried the flutter, but didnt care for that much, and my husband beats me on my back sometimes, when I ask him too and I also have a hand held vibrator that I have had since I was little. I dont know what other kinds there would be out there to use. But I think my fav, the one I think works the best would be when my husband beats on my back.

I know I probably shouldnt listen to predictions but it kinda helps in a since, it kinda opens my eyes and makes me realize what could happen, therefore it would in away make me work harder at keeping myself healthy. But you are right no one can predict when someone dies no matter what the statistics show.