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?
I am a personal fan of the field of positive psychology. I love to read about what it is and what it is teaching us about the science of happiness. I like to take courses and attend conferences about the subject. In fact, the whole purpose of this blog (and hopefully of a future book) is what the scientific study of positive emotion can teach people with serious health concerns about optimizing their happiness and wellness within the context of illness (hence the title of the blog).
The “D” in my acronym stands for “Discover Your Strengths and Use Them Every Day.” First, I want to describe why this is important when it comes to happiness. Then I will show you how to discover your strengths the high tech way (an online resource). Of course, you could just ask you mother. Then I’m going to describe a project I am designing for this blog that allows me to use my strengths as an example of putting this “rule” into action.
It used to be that to “improve ourselves,” we were to work on our weaknesses. However, new research shows that living and working from our unique strengths rather than paying attention to deficits creates lasting personal happiness and allows for peak performance. When we identify and further develop our unique talents and character strengths, we contribute more effectively and enjoy the process more.
It makes sense, really. Imagine that you are doing something that you are really good at, working towards a goal that you strongly believe is important. In fact, go ahead and close your eyes and remember such a time. Remember the feeling of mastery and flow you might have felt during the activity, and the sense of accomplishment when you were finished.
Now remember the last time you struggled to do something that was beyond your skill level. It was likely something that you were not innately good at, and likely caused great frustration and a feeling of inadequacy.
Clearly, the first situation leads to positive emotion; the latter, not so much.
What are your strengths? You probably have a good idea without a scientifically designed questionnaire. But, if you take it, you might be surprised. I know I was.
In his book, Authentic Happiness, Martin Seligman describes how he and his colleagues came up with the Values In Action (VIA) classification of character strengths. There are 24 character strengths each describing a specific aspect of positive human character. The strengths are grouped into six categories termed virtues. These virtues have been determined cherished among most religious and philosophical traditions. Collectively, they are said to capture the notion of good character. The characteristics of character strengths are:
• They are moral traits and can be developed and strengthened by choice.
• They are valued for themselves rather than as a means to an end.
• Using them elevates rather than diminishes others.
• They are ubiquitous.
We all have the ability to exhibit any of the 24 character strengths but tend to rely on some more than others. The website www.authentichappiness.com offers a free, online survey called the VIA (Values in Action) Signature Strengths Questionnaire, which ranks your strengths in order of importance to you. Your top five strengths are your Signature Strengths.
When I took this questionnaire, I was intrigued by what turned out to be my top five strengths. I won’t go into them all now, but one that struck me as quite useful for me to have was number two:
Hope, optimism, and future-mindedness
You expect the best in the future, and you work to achieve it. You believe that the future is something that you can control.
Maybe that has something to do with why I have done so well (so far) even though I have cystic fibrosis.
I love to do projects…especially projects related to either learning something, or achieving an athletic goal. I love to set a goal, and then plan my strategy to achieve it. I am now, and always have been, very goal oriented. Goals excite me…they challenge me, and bring out the same self-discipline that carried me through medical school.
Not surprisingly, I was a sucker for the P90X home exercise program this spring, and have written about that experience and the unexpected results in a previous post, “How I Grew a New Lung in 90 Days.” Now that I have a PICC in for IV antibiotics again, I am already starting to plan for the next round of “get Julie back in shape”. And, now that I have this blog, I am going to post what I do and how it felt each day. Why? So that if any of you are interested in joining me, you can do so, and we can motivate each other! The best thing about a blog is that it allows comments…both to and from the blogger.
So, if you want to join me, the start date is Monday, September 29. This will be a three-month program (unless my lungs say differently). I am creating a program that merges the P90X program with a weight-training regimen I have done in the past to successfully gain muscle mass. There will be six exercise sessions per week with one rest day. Each session will take about an hour…except on ab days (ouch). You will go at your own pace, but I will recommend a given “perceived exertion level.”
The equipment needed is: you, water, supportive athletic shoes, some light free weights, and a chin up bar. If you can, buy the P90X program. I will use their aerobic and ab routines because they are great! Also, if you don’t want to go to a gym, you can do the weight training sessions with just the above equipment. The program I am doing is a modified P90X because I love going to the gym and lifting heavier weights. The P90X weight workouts are good, and if you do them, you will definitely get stronger. I just need to atmosphere of my gym, and want to use heavier weights because I have some significant strength to regain.
Are you game?
I am 47 and have garden variety, homozygous delta F508 CF. While it is true that I probably benefit from a helpful modifier gene or two, I am convinced that the reason I am so healthy today is that I have exercised regularly and vigorously my entire adult life. As I write this, I have rivulets of sweat dripping down my shins making tiny little puddles on the floor. My schnauzer loves it. The reason: I just completed the “Plyometrics” DVD from the P90X Home Fitness Program (have you seen the infomercials?). I am on round two of P90X now. I don’t know what the “P” stands for, but “90” is the number of days the program lasts, and “X” is for Extreme.
I’m not really endorsing P90X here. I like it because it is HARD, it is different from my usual routine, and because it is a home workout program…no germ-infested expensive gym is needed. With a few dumbbells and a chin up bar, anyone in pretty good shape can do it. For example, the DVD I just finished included about 45 minutes of jumping up and down in various ways. Imagine wearing the Vest while riding a racehorse and being the horse, all at the same time. It’s hard! But this program has changed the way I look at and do my exercise, and that is what I want to share.
I was sicker than I have ever been this winter. When my energy started drifting down, we discovered that my lung function was doing the same thing, so I did a three-week home IV treatment. Not surprisingly, except for drug allergy issues and a DVT in my arm from the PICC, I felt GREAT when it was over…for two days.
Then, as luck would have it, I caught a nasty virus, which resulted in a week in bed, followed by a week in the hospital with pneumonia, followed by ANOTHER three weeks of IV antibiotics.
Not surprisingly (to me, anyway), as soon as the line was out, I was searching for a workout program to get me back to the shape I had been in before all of this began. P90X was the way I did it, but there is a myriad of ways to get moving.
So every day, I followed the program. I exercised to the DVD’s six days a week in my garage. These were short sessions, about an hour long each
Now, here is the part that is hard to believe. Between the antibiotics and the exercise program (nothing else changed), I seem to have grown a new lobe of lung tissue! Kidding. Not really, of course. However, I am a bit of a nerd about my pulmonary function tests. I have them dating back over 20 years. When I blew for the first time this spring after finishing the exercise program (and six weeks of antibiotics, don’t forget). 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%!
I was a bit shocked by the “percent predicted” figures, having not heard those numbers in decades, so I decided it was a mistake. Maybe the norms being used were different. Maybe the machine was wrong. Then, I blew again. Same numbers. I drove home wondering how in the world scar tissue could turn into lung tissue (I’m sorry, but I still have a Pathologist sense of humor, despite retirement).
So I did what a nerd would do, and I dug out all the previous reports and compared volumes. Volumes don’t lie. Sure enough, the last time I saw numbers even close to these were in my 20’s. Did I mention that I’m 47?
Yes, this is an anecdotal story (but a true one). I did not do a randomized, double blinded, placebo controlled study demonstrating unequivocally that exercise caused my lung function to improve (although several well designed studies HAVE shown that exercise slows down decline in lung function in CF). I know that the antibiotics helped immensely. But it isn’t like I haven’t had antibiotics before…
The bottom line: You must move! It helps to push yourself a bit. Breathe hard! Cough! Repeat! If you tend to desaturate, use oxygen! It gets easier. Even though we have CF, we do show a training effect, just like everyone else. It is hard work to stay alive and well with CF. This is undeniable. But the reward is worth it.