Worried about PFT

[anonymous]

Hi. My 11 yr old step daughter w/ CF/CFRD had her first tune up last Feb. She left the hospital in the 90's and now her FEV 1 is 65%. She was doing Vest 2X day w/ pulmozyne in a.m .and hypertonic saline 3% in p.m. September clinic showed she had pseudomonis. She just started Cipro and is doing 3 Vest/day. 2 w/ Tobi 1 w/ pulmozyne. Can we expect to see a big difference w/ Tobi ?? Can her PFT's go back to high 90's w/ Tobi or Iv's in hospital?? Is it scary that we're seeing such a decrease this year. She is energetic, and very active in sports.

Any help would be appreciated!!

 

[Dustin82]

I dont know about anyone else but Tobi always helped me when I was sick I dont know if it will help that much but in my oppion Tobi is good stuff but some people do better with meds then others I am one of them that it really helps me and I hope your daungther is the same way!!!! Good luck Dustin 23male w/CFRD

 

[cfgirl2008]

just because shes doing her treatments doesnt always mean they will be high it depends how the CF affects her and how she does it. not trying to worry you anymore just sayin


tiffany 15 w/cf

 

[supermanfan]

Tobi was a great thing for me... my only problem was when I was 18 I didn't get a flu shot, and I got real sick. I was never able to get my base health level back. Cipro was also a great med for me, except it made my fingers swell, and painfully stiff as though I had arthritis, which I heard was a common side effect from it.

 

[lovingBenandCambree]

There is never a guarantee that someone will be able to get back up after such a decrease. I had an extreme decrease though and through much hard work, dedication, and patience. I have been able to bring my PFTs quite a bit. Keep encouraging her. It truly can be a struggle. If you have any questions or anything please ask. I know this probably isn't the answer that you wanted but honestly if she continues working hard she can have a wonderful life. I am living proof of that. Good Luck!!!

Emilee

 

[anonymous]

When you all say you worked really hard and they went up, what do you mean? Do you mean you did your meds faithfully everyday or did you loads of walking and exercise or what?

Shamrock

 

[thefrogprincess]

TOBI and cipro for 2 weeks made my FEV1 jump from 35 to 60! If she tolerates it well it is not unreasonable to think she can get her numbers back up to her norm.

 

[supermanfan]

One of the things I was always told a a kid was to practice blowing up balloons... and i'm not talking about the big ones that are easy... I mean the tiny ones that turn your face red from blowing it up. That is great excercise on the lungs. The strong air movement will also help break up the mucos.

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