Tuesday, April 30, 2013

Turning Back the Clock

Great question from a reader:


I have a few questions for you, I remember reading on your blog about how you raised your PFTs. I was recently told I can't raise mine and nothing motivates me more than someone saying I can't. I obviously went through the stage every CF patients goes through and stops or halfway does their medicine and treatments and stops working out. So my question is what all did you do to raise yours? What kind of exercise? And did you eat differently?


I was told in 2009 that I should get comfortable with blowing a 50%. As with you, that motivated the heck out of me. It took two years of crazy hard work and dedication, but I was able to blow a 73%. Since then, I've remained steady and haven't had too many drastic dips. I've even been able to inch them up a little more.
For two years, this was my schedule -
Albuterol/Atrovent 4 times daily
Pulmozyme 2 times daily
7% 2 times daily
Inhaled antibiotic 2-3 times daily
Vest 4 times daily for AT LEAST 30 minutes at a time
Ran for 20 to 45 minutes 5 days a week
Took daily walks and bike rides
Lifted weights 3 to 4 times a week
I didn't really eat all that differently.
As you see though, it was a big commitment and obviously one that has paid off for me. When I blew that 73% in 2011, it was my highest number since 2003. So you can't tell me that we can't "turn back the clock"!!
Anyway, hope this helps and please let me know if you have any other questions 

Comments (4)

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I applaud your effort to try to raise your lung function and I'm sure increased adherence can only help, so I think the way you're going about it is really smart. For the sake of managing expectations, I just want to add that I think the nature of lung function decline does have a big impact on how feasible re-gaining it is. In general, re-gaining lung function that you lost quickly tends to be much more feasible than re-gaining lung function that you gradually lost over time, especially when you're' talking about such drastic improvements like Ronnie's. That is NOT AT ALL to say that it is NOT doable when your decline was slow and steady or that it isn't worth the effort to try. I definitely encourage you to try your hardest, especially since it sounds like there's room for improvement with regards to treatment adherence and exercise. I just think it is important to manage expectations so you don't feel badly if you step up your efforts and do everything perfectly and you still don't see a magnificent increase like Ronnie did. Regardless, you'll never know if you don't try and stepping up your self-care can only help, not hurt, so I definitely do urge you to take the best possible care of yourself and never settle just because someone tells you to. Even if you don't see the improvements in your FEV1, I bet you'll feel better and have more energy -- and those are just as if not more worthy and important goals as improved lung function.
2 replies · active 622 weeks ago
I agree. It's a commitment to adherence and exercise that's important.

I was addressing her question, which was "how did I get mine up?". I also think it's out of line when a doctor says that our "numbers" can't increase.
Totally agree. There's no way anyone can know what your lung function "ceiling" is. It is not only out of line but also uninformed for a health care provider to suggest otherwise.
I believe the best way to stay healthy and maintain a high level of PFT values is to exercise and get enough sleep. I did this my entire life. However, in 2004, I had some surgeries and was unable to exercise as much. Granted I was in my early 40s at the time. However, if I had to do it over again I would have made exercising the top priority.
So, I wish you all the best for you and that you can gain a few points.

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