Have you improved your fev1????

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saintoffeon

New member
Two years ago and change (May 2013) I was at 45% or so. Then I had one bad thing happen after another, insurance/provider fiascos, and I basically went a year and a half with next to no treament (certainly not optimal).

Last year at the beginning of August I went to Mayo Clinic for a transplant eval (to get out ahead of it, not from a sense of urgency....wasn't my idea) and they said 35%. Plus my lungs had expanded to nearly 8L and almost half of it was trapped gas. It was a bad spot.

Things didn't turn around enormously medicine-wise until the beginning of this past summer. I was able to start two months of some light exercise, got some Pulmozyme and a little bit of albuterol, and, miraculously, for the latter month of it, a vest!

Did a PFT (trying to get on Orkambi and wanted a before), and presumably aided by that "late in the game" boost of activity, back to 43%.

Then, I got on Orkambi, and it beat me into a bloody pulp, and then I got way the hell better, and now I'm an exercise machine. If I'm anywhere close to what I was before still, I'd feel like imported_monto, like, what use is this as a metric?

I can't say I'm overdoing the exercise yet, or even doing anything so high-level so often that it feels like it'd bring me down, but the treatments and the exercise combined, my quality of life is so good I don't care what the number is (I will when it comes time to re-up the pill, just saying =)
 
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amaral

New member
My 11-year-old -on had an increase of 76% to 91% with an high intensityhigh intensity interval training program. We had the guidance of a P. E. teacher and this result was obtained in just four months of training.
 
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Kwplus Jared

Guest
To be blunt, I would find myself another doctor ASAP - are you at an accredited CF care center? If so, you should request and complete a survey regarding the care you are receiving there; this is being implemented by CFF. At this year's National Conference, there was a plenary session on CPET testing and the MEDICAL NECESSITY of exercise in prolonging lives in cf patients. You can access sessions by going to the site.
My son, now almost 16, was diagnosed at 8 1/2 y.o., with an initial FEV1 of 90%. Eight years later, he is at 130%. I FIRMLY believe that exercise has played a pivotal role in that increase, along with everything else in daily care.
 
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Ank

New member
Fev is dependent on weight if u weight less..u can act shw that ur fev is better.other than thisnebulising HSaline..albuterol cn improve temporarlynw sm.ppl also hv orkambiother than this exercise can actually bring small real increase fev If one has kyphosis(curved back)back exercise cn help.
 
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Kwplus Jared

Guest
Good for you, Amaral! I advocate for my son's physical program at school as well.
 
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Radies

New member
Hi Andy, I don't get on this site as much as I used to, so I apologize for the late reply. To answer your question, I have not been able to increase my FEV1 for any sustainable amount of time. There have been times when it will elevate (after IVY antibiotics), but then it will usually go back down. I've been fortunate, that it has stayed fairly steady around 37-38%. As for your Partner, she can get Orkambi now since its out on the market. However, I will warn that those with lower lung functions has more risk for chest tightening (which I had). I had to stop the drug because of that. I'm now eagerly awaiting the new drug VX 661 combo with Ivacraftor (VX 770). Its in phase III study now, and will hopefully make it to market within a year or two. Best of luck to you and yours.
 
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