Have you improved your fev1????

[Radies]

I'm looking for any information regarding people who have succesffuly improved your FEV1. I need to know what you did differently, and how much you improved it.

My doctor doesn't believe its possible, and really will not offer any ideas to me. Everything I suggest trying, she tells my why its not likely to work, and how their is no research that shows it works. I've suggested exercising, using the PowerLung device, trying Kalydeco off label. I'm looking for anything that works.

I am DDF508 and I'm currently at 39% (I hit 40% a month ago). I need 40%, for a study I'm trying to get into, and their is no exceptions.

I really appreciate your ideas and thoughts.

Thank you.

 

[running4life]

I am not sure if this counts but I was at 57% March 1 when I was hospitalized for my first exacerbation. Two weeks later was at 76%. Tested a few days ago and I'm at 84%. I'm hoping to get in the 90s next time I have an appt in November. My doctor said using Cayston can improve numbers by 10%. I work out religiously - run, cycle, swim, and lift heavy weights. He also said even if my FEV1 doesn't improve, it's improving everything else in my body. Best of luck to you.

 

[Juniper]

I have started swimming recently and last clinic visist mine had gone from 50% to 69% and i was told it will increase my lung capacity. Hope you find something that works for you .

 

[SaraNoH]

How can a doctor say something like that? Sheesh, what a downer....
While my fev1 has been dropping more and more, if I kick it into high gear it usually goes up. High impact cardio exercise (jogging etc) is always the best. Heck, even walking fast can do it. Staying up on you nebs of course.... After I started Cayston I went up 10% without doing anything extra.
I think that doing just about anything that changes the pressures in your lungs can be beneficial, since it can help you cough up stuff. Singing loudly in the car? Oh yes

 

[Lena Bean]

When I was a teenager I got mine up to 114% from working out every day. I played DDR for 2 to 3 hours and would do 50 to 200 push ups and sit ups each ( the amount I did everything depended on how I felt that day). At that point my FEV1 was normally in the low 90s to upper 80s. I am in the high 70s currently and intend to start doing a new work out regimine (is that how you spell that?), not saying it works for everyone, but it definitely worked for me.

 

[kosdancer]

Keep up with your treatments, add extra airway clearance any way you can, whether that's an extra vest, acapella, working out - anything extra counts! Your doctor sounds like one I had when I was young that my parents called Eeyore, they would ask if exercise would help and he would tell them no. Are there any other doc options for you?

 

[hammerpocket]

I changed doctors partly because of that type of negative response. (He also would regularly take phone calls during appointments, which I don't remember my current doc ever doing.) I was lucky in that my CF center had recently started an adult clinic (with different doctors), so that was my excuse for changing.

Anyway, my FEV1 used to be not only lower, but erratic. We finally realized that I was having problems with TOBI, so during months I was using it my FEV1 would be low, and Cayston months would be higher. It was scary to drop TOBI and not replace it with anything, but I do better without it.

But I also have benefitted from exercise. I joined a gym and the more regularly I go, the better I seem to do. I'm not even working out really hard. I mostly walk (fast) and run when I can. I've tried weights, but I have a harder time keeping up with that. There's also the added benefit of general well-being that helps me get through the day-to-day drudgery of CF therapy.

 

[Tisha]

My FVC and FEV1 have gone up and down through the years. FEV1: extremely low in 1985 (14% of FVC!!) then up to 80% in 1997-1998 down to about 40% in 2002 (I went to a college where my peers smoked), up again to 80% in 2009, quick downhill until 36% this June, yesterday 55%.
In my case it's been a whole set of different things so I cannot point out to one, but exercise sure helps, as well as keeping infections and inflammation down.

 

[CyrilCrodius]

This is uncertain. At my last appointment, my PFTs shown an increase of 3%. From 30% one month ago to 33% now. HOWEVER, this time I didn't do my PFT test on one of the machines I usually do it on. I found that this increase of 3% was very suspicious as I've been stuck to 30% and below for over a year and the only thing I have changed in the last month to my treatment regimen is that I now take A/D/E vitamins. Nothing else has changed.

So either the machine was wrong or vitamins have made a difference. (It COULD make sense, because vitamin E is an antioxidant, so it's antiinflammatory.)

 

[Andy James Turner]

Radies, you're an inspiration. My Partner has the same mutation DF508 and has to hit the magical 40%. NACs (glutathione) and probotics with a diet change have helped. She was at 37% then hit 27% and is now at 33%. It seems from my daily journal that she was doing best when she was on the juice diet for 6 weeks as well as doing tai chi. Then she gave up and her FEV plummeted. However, since being on NAC's and probotics she's not been ill since July 4th 2014. She didn't even get the flu.

We're told there's a new KALYDECO Ivacftor yet, as you say, she has to hit 40%.

I notice you wrote on this thread in 2012. Did you find a way to improve your FEV1?

Many thanks, and many thanks for all the replies on this thread.

 

[Andy James Turner]

Radies, you're an inspiration. My Partner has the same mutation DF508 and has to hit the magical 40%. NACs (glutathione) and probotics with a diet change have helped. She was at 37% then hit 27% and is now at 33%. It seems from my daily journal that she was doing best when she was on the juice diet for 6 weeks as well as doing tai chi. Then she gave up and her FEV plummeted. However, since being on NAC's and probotics she's not been ill since July 4th 2014. She didn't even get the flu.

We're told there's a new KALYDECO Ivacftor yet, as you say, she has to hit 40%.

I notice you wrote on this thread in 2012. Did you find a way to improve your FEV1?

Many thanks, and many thanks for all the replies on this thread.

If food be thy medicine, let medicine be thy food.

 

[imported_Momto2]

I sort of understand where your doc is coming from. When I was at 59% (and unfit) I started working out A LOT. I built up to running a 5-10K every day PLUS swimming a mile 5X a week and biking 10-15 miles 4X a week. I went to the doc fully expecting a huge rise in FEV1. Guess what, it had actually gone DOWN to 58%, but my muscles and cardiovascular system were in terrific shape. But I had not improved my FEV1. I frankly, was shocked, since I felt so much better than before and could run straight up an adirondack mountain. Later on, I had a series of illnesses and injuries and stopped working out. Got back to where I had been previously and wouldnt have been able to run a mile if a lion was chasing me. Went to doc, FEV1 was back at 59%. Really??!?!?!? So, my takeaway msg is pay attention to your own body and how you feel, not what is SUPPOSED to help or work. Not everyones experience/disease is the same and there are so many mitigating factors for improving FEV1, some of they quite strange. If I want my highest FEV1 number, I actually have to stop exercising and nebbies for a few days, because they are irritating to my lungs and right now the restrictive disease is as serious as the obstructive. It's totally counter-intuitive, at least to me, but the daily numbers I take dont lie. But in the long run, its best to have your body strong, so I still plug away at that darn treadmill...........

 

[Andy James Turner]

Gosh, that really is counter-intuitive. When you were ill and unfit your FEV1 was higher. Yet when running like Bolt it was lower. That is something I must research, I've heard this before. I totally agree, fitness is the winner, as long as it's done within one's own limitations.

You must have been gutted.

That's the darn thing with CF. One can look and feel amazing, then, fall over a precipice and others don't understand it. Yet your FEV was up after illness'.

Thanks for your words of wisdom, listening to the body is most important.

Sorry to hear about your present situation, it must be most frustrating and painful. Enjoy the hamster wheel, once you can get back on it. At least you're hitting the high 50's.
Congratulations on your children

 

[static]

Yeah inflamation sucks. I'm starting to get that a lot now too.

Swimming is the only thing so far that I found somewhat helps with that. The mist combined with the air and exercise helps get the stuff deep within the lungs that would otherwise be blocked off by the inflamation. Of course make sure the pool is properly cleaned first.

 

[imported_Momto2]

Andy- I wish I were in the high 50's.......batting 35-37% now. Loosing roughing a percentage point every month. NOT good. But I keep trying.


The kids help keep me going. And the husband.

 

[JustaCFmom]

I found this very inspiring. https://www.youtube.com/watch?v=nWn4lLwr4Gw

I do believe that being active, etc is key to optimal lung functions. One percent up or down doesn't seem so significant to me (except when you are trying to get into some clinical trial!). I would look more at the trend over an extended period of time. Also, I think different seasons can impact lung functions. We don't live in a bubble. Fitness is just one piece of the puzzle.

 

[welshwitch]

Marathon training helps a ton. I realize not all CFers can do this, but I always feel that after a long run all the toxic bacteria has been expunged from my lungs. And the side benefits besides breathing are amazing: eat better (increased appetite), sleep better, build muscle, etc. I just ran 10 miles today and feel great

 

[ethan508]

Running help me feel better in a lot of ways, but my lung function actually dropped very slightly over the year that I was really training (3 runs a week, plus some other activity) for a half marathon. Also training made me more tired (everything makes me tired). But in the end I think the net benefit of having a better fitness is worth whatever effort you can manage to put into consistent manageable workouts.

 

[occupyjapan]

My FEV1 is up 10%, FVC up 20% and small airways up nearly 30% since starting Orkambi. FEV1 and FVC (especially FVC) are well over 100% now. And the increases are compared to pre-Orkambi numbers when I had just finished up a round of oral Zyvox and nebbed Zosyn; so basically, my lungs are significantly better without additional antibiotics compared to where they were prior to Orkambi when I WAS on antibiotics. Pretty amazing!

 

[imported_Momto2]

ethan- yeah, same here. It used to be that running helped clear my lungs, but when I got to a certain stage in my disease, it actually INCREASED the inflammation and made my lungs a bit worse. BUT, it greatly increased my quality of life overall since I was so much fitter. It's a weird puzzle sometimes. The strange thing is that my FEV1 has dropped more than 22 percentage points in less than 2 years, but I havent had a single infection during that time and I dont culture anything other than the occasional low-level PA. The loss is all inflammation based. I'm even on a 5 day chemo schedule to keep the inflammation down. The docs are at a loss on how to help me further, and I've consulted all over the country. It's very frustrating because I've been fighting so hard for so long, always put my health first and foremost, and this thing I can't seem to improve no matter how hard I try.