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Message from a reader and my response...
Hey Ronnie, Congratulations that must feel awesome! Do you have any tips? Do you practice doing pfts on a regular basis? I recently had my quarterly appt and I had been running about 25 miles per week for the 3 weeks leading up to my appt and I went down in my FEV1 from 51 to 47%. I was so bummed and ended up crying in my appt (which I've never done.) I know that running is great and it gets me to cough up soooo much junk and I do lift weights regularly too but is there anything else you do? I mean that is amazing to jump up like that....12 %?! I have never had an increase like that. my pfts have just been hovering around 50% for the past 6 years. Any tips would be greatly appreciated:)
Great job on running so much these past three weeks!!! One thing to keep in mind is that you've been hovering around the same numbers for 6 years, so you can't expect to see a big jump in only 3 weeks. I had a steady decline for 8 years until I finally said "enough is enough". I was prepared to put in at least 8 years of hard work. Know what I mean? It takes us quite a few years to get to where we are, so it may take quite a few years to get to where we want to be! The key is to just stay after it! Don't be discouraged by one PFT result. PFT tests are very finicky and for all you know your numbers could be better today. Use those results as wind to blow your sail and move the boat forward, don't turn your sail and try to go against the wind. As far as what I do...Before I get out of bed, I lay there for about 5 minutes and take deep deep breaths, as deep as I can, and exhale. I try to get all of that mucus out that made it's way up my lungs while I was sleeping. I do 3 to 4 treatments a day (albuterol/atrovent, Pulmozyme, HTS, Inhaled antibiotic, Advair, Vest) and I make sure to do SOMETHING each and every day. Whether it's the gym, walk/run, bike, skip, whatever. Stick with it and remember, even if your numbers don't go up, imagine them being the same in 5 years...that would be quite a positive thing!!!
**Now, before you comment that you do everything listed above and then some and your numbers won't budge, just keep in mind that I was asked what I do. We all understand that there are some among us that can do everything right yet they still suffer...just as there are some among us who don't need to touch a treatment or exercise in any way and do just fine. The CF population is like a big bell curve with many of us being able to affect how we feel on a day to day basis and then others on the fringe in the categories I mentioned above. For many of us, if we stay committed to treatments and exercise it will have nothing but a positive effect on our health. And please, before you comment that everyone you know gives it their best, just think about that statement a little bit. Our best? How would you define it? For me, a guy who devotes 3-4 hours per day on treatments and exercise, I know that I can still do better. I would contend that we can all do better. If you've mastered the ability of "giving it your best", I beg you, fill me in on the secret. I don't think it's a bad thing at all to wake up every day and try to be the best version of ourselves. Unfortunately, I still fail just about every day :) Maybe I need to lower my standards?
