Have you noticed? It seems that there is a number that everyone in CF-land seems to fixate on. It’s called the FEV1, which is basically the amount of air one can blow out forcefully in one second. This number is then compared to the amount someone of matched age and size who is CFTR-able can blow out in one second, to come up with the “percent predicted” FEV1.
I hate this number. It compares me to a group of people with “normal” lungs, and this isn’t fair. Perhaps this is the perfectionist in me speaking, but I don’t want to achieve a grade of less than an A+, and never have. Yet, no matter how hard I try or how much “extra-credit” I do, I can never beat those a##holes I am compared to. They don’t just barely slip by me in the last 5 meters, either. They cream me. As I continue to age, they are rapidly approaching lapping me.
So I’ve been thinking about how to approach this problem. It is unlikely that I can track down the names of the people who were tested to come up with the “norms,” but if I could, I would ask each of them to kindly remove one lung and THEN let’s see who can blow out more air in one second! But alas, there are probably some HIPAA rules against this, so instead I’ve come up with a better solution: I am going to give myself a handicap, just like they do in golf…only in reverse.
A golfer’s handicap enables golfers to compete with each other on a level playing field. For instance, imagine an awesome golfer who can make par on every hole; she has a zero handicap. If another player tends to bogey every hole, his handicap is 18. So if these two theoretical players compete against each other with a friendly bet of, let’s say, a beer on the 19th hole, the two raw scores are not what is used. Nope…the 18 handicap dude gets to subtract 18 from his score before comparing his to his much more skilled partner, who has to use her raw score. If he makes all bogeys, and she makes par on every single hole but one (hit that stupid tree on number 8), she’s buying the beer. Get it?
So, in the context of FEV1, I have decided that for each year I live past 37, the “median” life expectancy of CF (another number I hate), I get to add 100 ml to my FEV1 volume. I pretty much just pulled this number out of nowhere, but it seems reasonable. So, if I am adding right, my last blow was a 143% predicted. BOOM!
I knew that would get your attention!
Let me start by saying that by some grace of God or Universe or Source or whatever you want to call it, despite being a DD508, I have decent PFT’s at age 51. I know that part of that is because I am now and always have been (since age 13 anyway) a total exercise fanatic-bordering-on-nerd. There is rarely a day where I don’t do something…even if it is only a walk with my dog…as long as I am not on IV’s. In fact, even when I am on IV’s, I have been caught jogging or at least doing leg weights. My motto has always been, If You Can Breathe, You Can Exercise, which by the way, was the tagline of a CF Exercise Program I helped design and run at Stanford Medical Center.
But today in clinic, my FEV1 was down 15 percentage points from the last visit. Bummer. I’m not sick, but this is not my Cayston month, and it shows. In addition, I’ve been on a major weight gain kick, which has involved eating a ton and lifting very heavy weights. Almost all of my exercise time, except for dog walking, has been spent in the gym, not on machines, but doing deadlifts, bench presses, kettlebell squats and presses, etc. I leave exhausted and feeling great. Indeed, I have gained 6 lbs in two months. But I could tell yesterday while playing tennis with my son that my aerobic conditioning was off. I was sucking air and dreading today’s pulmonary function testing.
Isn’t it ironic that I actually started to write this article before the clinic visit? Subconsciously, I must have known that I was going to have to revisit this issue, as I have done so many times in the past. That’s just the reality of CF, as I’m sure you all know. For me, return to the land of living (and breathing) after an exacerbation always begins first with a heavy sigh, and then a muttering of something along the lines of, “Ok, Julie, here we go again. Back to Day One of getting back into shape.” So far (fingers crossed), I’ve always been successful. This article is a chance to remind myself (and you) how I’ve done it.
But before that, I know there is more to the fact that I exercise that has lead to my luck with the disease. Exercise is absolutely necessary! Don’t get me wrong. But it is not sufficient. Although most of this article will deal with the types of exercise that I think are the most important, there are two more areas of self-care that cannot ever be overlooked if you want your lung function to improve:
1) Be absolutely unrelenting when it comes to treatments, including aerosols (antibiotics, mucolytics, and hypertonic saline) and airway clearance techniques (for me, the Vest). How many times a day? As many as it takes! For me lately, it has been two. After my experience today, that number is going to increase to three for as long as it takes to get those numbers back up.
2) Keep your weight up, no matter what it takes. This has been my Achilles heel, but it is very clear to me that I am healthiest when I am heaviest. I’m not talking Biggest Loser heavy here, obviously. Overweight is as bad as underweight, just in different ways. But then, I don’t know too many people with CF who are overweight.
Now on to the NUMBER ONE WAY TO RAISE YOUR PULMONARY FUNCTION TESTS: EXERCISE
I used to think you couldn’t really increase your baseline PFT’s. As a pathologist, it made complete sense to me that once your lung was scarred from chronic infection, there wasn’t much you could do. In medical school, we learned that in CF, PFT’s just go down, and the goal is simply decrease the rate at which they go down.
You know what else we learned? We were told that the brain could not make new neurons; that after losing neurons to stroke or injury, the patient was destined for life to be disabled. This is completely false, as the evidence over the last two decades has shown that the brain is “plastic” and forms new cells and new connections throughout life. Now I don’t really think scar tissue is turning into lung tissue, but something vitally important is happening in the lung tissue that remains with exercise. We don’t know exactly how, but it gets better at what it is supposed to do.
My epiphany about exercise and PFT’s came after a round of P90X, and has been confirmed by many people I know who have raised their PFT’s with exercise. I’ve written about my P90X experience elsewhere on my blog, so I won’t go into detail here, but after one round of this 90 day program of intense exercise, the volume of air I blew out in one second (FEV1) increased by 39% since the previous, and the small airway number (the FEF25-75%) improved by 70%! As I said in the blog, I didn’t believe it at first, so I went home and compared the actual volumes of air blown with previous tests. At age 47, I was suddenly blowing what I blew in my 20’s. Weird…and definitely not what I learned in medical school.
Since then, I have seen similar results after hard-core training with kettlebells, in combination with starting Cayston. Yes, Cayston is a miracle drug, and I’m sure I would have improved immensely with it alone. But you can’t convince me that my VO2 max training with kettlebells didn’t provide a major assist.
THE BIG FIVE
Even though this can be somewhat boring, it is important to establish a good aerobic base before moving on to more challenging interval and plyometric training. This simply means that you are able to maintain an aerobic exercise (walking, jogging, cycling, swimming, etc) continuously at a moderate exertion level of 6-7/10 (where 10 is how you would feel if you were sprinting as hard as you can, and 1 is how you feel sitting on your couch) for 20 minutes. As I’ve said before, it doesn’t matter what it looks like to be at this exertion level (a 6 for me would involve doing what would feel like a 2 to my son). What is important is getting to that feeling of a 6-7.
Training for this base simply means starting where you are, whether that is walking around the block or cycling for a mile, and gradually building distance or time at a moderate exertion level.
Once you’ve reached the point where you can exercise continuously at a moderate pace for 20 minutes, you can add some excitement to your training. Interval training is very simple. You simply increase the intensity of whatever exercise you are doing for a given amount of time (i.e. 30 seconds), followed by a much slower recovery period for as long as you need it, and repeat this cycle several times. When I am starting to jog again after a break (for IV’s or while dabbling in another form of exercise), I will begin with a jogging interval (very short at first) followed by a walking interval (until I can breathe relatively normally again) and repeat this five or six times. In the beginning, my work:rest ratio will be at least 1:2 (for example one minute jogging followed by two minutes of walking). Over time, I will increase the time of work and slowly decrease the time of walking. This takes a lot of time (and patience), but it works every time.
If you haven’t checked out P90X, allow me to provide a short description. It’s home based program where you watch and follow along as best as you can to a DVD showing unbelievably fit people exercising their a*^&’es off. Three of the days per week, you do a DVD of circuit weight training, using weights or bands and bodyweight only exercises. These are tough, but there are rest breaks (thank God) and each of the three “weight days” you work different muscle groups, so you have time to get over being sore before you do the same DVD again.
Another day is devoted to a Kenpo karate workout (my favorite), and another to a 90-minute yoga practice.
None of these are easy, but the real killer day (and the one that I think popped open my airways the most) is the dreaded “plyometrics” day. Plyometrics is simply jump training. So, you jump around…a lot…without much of a break…for a solid 45 minutes or so after the warm up. This, of course, causes big time airway clearance. It’s a bit like riding a racehorse while wearing the Vest, and being the racehorse at the same time. Never once could I do this without stopping before the maniacs on the screen did. But I know that this day was the one that did the trick for my lungs.
Are there less masochistic ways to do plyometrics? Of course. Jumping rope or jumping on a trampoline (mini or full size) is a start. Of course, if you have arthritis or another contraindication to jumping, don’t do it. But if you can, pick just one day a week, and do some jumping!
I don’t really know if weight training can improve lung function. My guess is that it won’t. Apparently, my experiment of the last two months doing predominately weight training confirms this.
But I still include weight training as a valuable tool to increase lung function because, in my opinion, the results it brings provide important positive reinforcement and motivation to keep exercising! Think about it, you don’t see the end result of your aerobic work, when it is by far the hardest to do. You may see it on your next PFT blow, but those are few and far between.
On the other hand, weight training provides visible results (in addition to simply getting stronger). You also can train just like anyone else, as the anaerobic exercise of lifting is not limited by oxygen supply. You are in control here…not cystic fibrosis. This is rewarding, motivating, and, for me at least, makes me feel somewhat normal.
I’ve written quite a bit about this before, but in brief, if you are slumped forward at the shoulders and have a rounded back (a position many with CF assume after years of coughing), you are not able to use all of the available lung tissue. Simply put, increasing the flexibility of your thoracic spine has the potential to improve lung function. Read here how to do this.
That’s it! That’s all you have to do to know that you are doing everything you can to increase your pulmonary function: 1) treatments religiously, 2) maintain a good weight, 3) achieve a good aerobic baseline and then start with some interval training, 4) throw in some weekly plyometric training to shake it up and out of you (gross), 5) work to increase strength and watch your body morph before your very eyes, and finally, 6) work on good posture.
Easy peezy, right?