How to Raise Your PFT’s

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

Aerobic Base

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.

Interval Training

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.

Plyometric Exercises

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!

Weight Training

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.

Posture Work

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?

 

Step Three of Perfect Workout: Corrective Exercises

Now that you have rolled for five minutes (see here), and done ten minutes of mobility work (see here), you are well into your workout and have yet to do any “exercises!”  It’s time to start working your muscles.  Corrective exercises are best done now, while you’re fresh and sufficiently loosened up.

Corrective exercises are meant to do exactly what you would guess, namely to “correct” any structural imbalances which lead to vulnerable muscle groups. These types of exercises have also been termed “prehab,” with the idea that if you do them, you avoid injury, pain, and the need for “rehab.”  Why would imbalance lead to injury?  I’m glad you asked.

As I mentioned in the previous post, we all (and by “we” I mean those of us with CF) tend to develop a somewhat kyphotic (hunched forward) upper back, and usually the end result of this is an overarched, or “lordotic,” lower spine.  This lordosis combined with  hours and hours of sitting lead to tight hip flexors (the muscles that work to hinge your hips forward—think bringing your thighs to your belly-button).  Tight hip flexors tend to go along with weak gluteal muscles. This stick figure here shows the problem.  Tight low back and hip flexor muscles along with weak abdominals and gluteals.   The picture of imbalance.  This is a set up for low back pain.

These are the areas that I focus on in my “prehab” work.  I do exercises to strengthen my gluteals and abdominal muscles, and work to stretch and strengthen my hip flexor group and low back extensors.  In the YouTube video below, I go through a few of my favorite “glute” activators, and some good abdominal exercises using a stability ball.  Try these, and let me know what you think.

In the next post, I’ll talk about some corrective exercises for that pesky hunchback.

 

 

 

Step Two of The Perfect Workout: Just Move It

After  you have read “The Perfect Workout,” you will have a basic understanding of the eight steps, in the right order, to use as the backbone of your workout.    Step One  (discussed here) of your workout,  involves rolling out soft tissue knots and tight areas with the foam roller, or a small ball (or pair of balls).

Now it is time to move on to Step Two, which is all about improving mobility.  Mobility is becoming one of my favorite subjects lately, and I have been working diligently to improve my own.  It is not a complex subject; mobility is simply the ability to move.  As it relates to exercise, mobility is about the ability of every joint in your body to move through its natural range of motion.  Now, there are many, many joints in your body…somewhere between the mid 200’s to mid 300’s (the definition of “joint” is a bit fuzzy).  Most of those don’t need a lot of your attention. But before you stress your body with exercise, it is good to circulate a bit of synovial fluid (the stuff that lubricates joints) and wake up the millions of mechanoreceptors that live around your major joints…especially the ones you plan on taxing during your workout.

I have many tight and not so smoothly moving areas that I like to focus on, but the one area I’d like to talk about at length here, because I am certain that we all share this issue, is the thoracic spine.

Think about your posture.  Adults with CF very commonly have poor posture, and most of us with poor posture know that it is a problem.  The causes of the problem are many.  First, we are getting older, and with age comes increasing reinforcement of poor movement patterns.  The body adapts perfectly to what is asked of it.  If you start slumping your shoulders when you sit at the computer, or drive, or breathe, the body decides this is the position it is to always assume. Second, with age comes bone loss (especially in CF), which can lead to osteoporosis and subsequent hunching of the upper spine (technically called kyphosis).  Finally, as breathing mechanics change with increasing lung disease, there is consequential structural alteration of the thoracic cavity that worsens kyphosis.

Why is this?  Because the body tries to offset or balance the  increased hunching (kyphosis) of the thoracic spine with an over-pronounced swayback of the lumbar spine, also known as lordosis.  This leads to pelvic and hip problems, and the result is a mess. Sounds bad, right?  It is, and the worst part is that all of this leads to a very common problem in adults with CF, back pain.  The picture below illustrates this problem.

The thoracic spine is actually supposed to be very flexible.  It is supposed to flex, to extend and to rotate.  In contrast, the lumbar spine is designed more for stability and less for flexibility.  Sadly, most people have this backwards, and tend to use the lumbar spine more than the thoracic and hips for bending and rotating.  This often leads to pain, and commonly to injury.  Because the thoracic spine in CF tends to be even more “frozen” in place because of the above-mentioned issues, pain is extremely common.

But wait, there’s more.  Pain is bad enough, but what is worse is that the combination of poor posture and pain leads to inhibited airway clearance, less expansion of lung tissue and deteriorating lung function. Stiff and unmoving thoracic vertebrae also increase the work of breathing (isn’t it hard enough?).  None of this is good.  Not good at all.

But here is the good news:  Some of the postural problems in CF can be corrected.  Those having to do with muscle  and soft tissue tightness are reversible!  Stiff joints can be mobilized with specific exercises and soft tissues can be stretched to allow for normal alignment and movement.

This is why at least 10 minutes of your workout should be spent waking up and moving your thoracic spine.  If you are like me, you literally need to teach your brain exactly where this part of your back is, and how to move it because of something called sensory-motor amnesia.  This is exactly what it sounds like:  When you don’t move a body part much, the brain 1) forgets where it is, and 2) forgets how to move it.

I’m Convinced.  What Should I Do?

First, take a breath and don’t panic.  Then, check with your doctor and make sure these are safe for you, especially if you have osteoporosis. Next, to get a rough assessment of the amount of kyphosis in your upper spine, do this test.

Lie down on your back with your feet on the floor, knees bent to about 90 degrees.  Now press your low back into the ground and keep it there as you do the following:  bring your arms up and over your head, keeping them straight with your biceps muscles close to your ears.  Don’t move into pain, but see if you can bring your wrists and back of hands to the ground above your head.  If you have normal thoracic mobility, this is a breeze.  If you can’t, you are like me and have some pretty stiff and sticky thoracic vertebrae.  The following exercises are for you.  If you can, and want to keep it this way, the following exercises are for you.

1)Spend quality time with your double tennis ball contraption (link) every day…before your workout as I discussed in the previous article, and also throughout the day, especially if you sit at a desk a lot.  If you are bigger and have more muscle mass, you might graduate to double lacrosse balls.  This is not in my future.

2) Roll your upper back with a foam roller.  As you do this, bring your hands behind your head and keep your elbows close together (this gets your shoulder blades out of the way).  Slowly roll up and down the spine, stopping at the neck above, and the lowest rib below.  Try to “curl” yourself around the roll by aiming the top of your head to the ground.  If you have tight spots that are slightly uncomfortable, spend some time there.

3) Get on hands and knees and push your butt slightly back toward your heels.  Now take one hand (for example, the right) and place it behind your head by bending your elbow.  Now, keeping your butt back, rotate your spine by reaching the right (bent) elbow toward your left knee.  Come back up and do this several times, slowly.  Repeat on the other side.

4) Stay on hands and knees, but  this time sit all the way back onto your heels.  Take right hand again behind your head, and now rotate it up, toward the ceiling, trying to open your chest to the ceiling as well.  Don’t move your butt–this is keeping the lumbar from moving, thus isolating the upper back.  Repeat on the other side.

The sensory-motor amnesia problem is a bit more complicated, but can also be remedied with some drills taken from a system called Z-health.  I am currently immersed in learning Z-health and will write more about it in future posts, but these are some basic exercises that will begin waking up and mobilizing the spine.  Try them and then retest with the “raising the hands over the head” exercise.  My bet is that it will improve.  I don’t start my workout until I can do this without discomfort (but it has taken awhile to get there).  Start slowly, but be persistent and patient.  Your spine and lungs (and posture) will thank you.

Step One of Perfect Workout: Rolling

In a previous post I discussed my version of the Perfect Workout, which consisted of eight steps.  The first step is to deal with soft tissue abnormalities that lead to pain and/or poor movement patterns.  Here, I discuss this further.

Unless you are a newborn, when you walk into a gym — quite a feat for a newborn — you are going to have some muscular tightness…some tension or “knots” in muscles that occur from chronic movement patterns that are less than ideal.  We all have less than ideal movement patterns.  This is not a judgment…it’s just a fact.

Those of us with chronic coughs especially develop tightness and tension in the thoracic spine, and neck.  Those who sit at work or at home at a computer for many hours a day can also develop muscular tension in the neck and back, as well as tightness in hip flexor muscles and hamstrings.  A good way to think about this is that over a long time sitting in a chair, your body tends to become “chair-shaped,” i.e. short and tight hamstrings and hips.  If that’s not scary enough to imagine (a chair-body), the ugly truth is that muscles don’t live in isolation from their neighbor muscles.  The entire soft tissue system (muscles, ligament, tendons and fascia) is all interconnected.  So a tight, knotted muscle in one area very definitely affects muscles, tendons, etc. both upstream and downstream from it.

This is why a knot in the middle of your back can cause pain all the way up into the back of your head.  Or in my case, this explains why spending a few minutes rolling the bottom of my foot around on a lacrosse ball can help me loosen up my ankles and calves.

So why do we care?  We care because it isn’t just that pain in one area leads to pain in another, but muscular weakness (resulting from those painful knotted tissues) leads to imbalance and weakness elsewhere, which leads to improper movement.  Somebody famous once said, “The body does what it does perfectly.”  So if the body moves imperfectly, it then perfectly continues to move imperfectly.  And if we, for instance, go for a walk or add resistance to imperfect movement, we solidify that pattern in our brains, and become nicely set up for injury…and more pain!

So what’s a (tight and knotted up) body to do? Well, before asking the body to work, it is nice to do whatever you can to lengthen and unknot the muscles that need attention.  This does not have to be a long process, and you don’t need to spend 30 minutes on your foam roller, thus using up your workout time allotment.

I have three favorite tools that I use for this purpose.  First, the aforementioned lacrosse ball is a must for my feet, and occasionally for very tight knots in my back.  If a lacrosse ball is too hard (and you will definitely know this), you can start with a tennis ball and move to a harder ball as your tissue gets more pliable and your nerve endings get used to the process.  For my feet, I simply stand up and put one foot on top of the ball and roll it around.  You will automatically gage how much weight to put on the rolling foot (by how much pain you can tolerate).  When I started this process, I could barely tolerate any pressure—I have very tight feet. But I persisted, 5 minutes every day.  After a couple of weeks, I didn’t mind it at all.  Now this actually feels good.  I don’t usually do this at the gym.  Instead, I have found that the easiest time to do it is when I do my treatment every morning.  It’s like giving myself a foot massage!  I also keep a lacrosse ball in the bathroom.  You figure it out.

The second tool I use is the foam roller.  You’ve probably seen these around.  Most are about six inches in diameter and about three feet long.  They are made of Styrofoam, and have lived in the gym scene for years now as a favorite instrument of torture.  I say this because they are used for “self-myofascial release,” a process that is slightly uncomfortable, especially when it is really needed.  I roll my calves, hamstrings, gluteals, and if I’m really feeling masochistic, my quadriceps over such a roller.  You will know what you need to roll by how painful it is.  The more it hurts, the more you need it.  You simply modify the move to a tolerable level of pain by taking some of the weight off the body part being rolled.  I generally spend five minutes or so rolling as the very first part of my workout.

Tool number three is a very expensive, intricate and complicated instrument.  Kidding.  It’s called a “peanut,” and is comprised of two tennis balls duct taped together to form a peanut-shaped duo.  This handy little tool sets my thoracic spine back to where it’s supposed to live every single day.  The maneuver is simply to place the peanut on the floor under your lower ribcage, and lay back on it so that the groove in the peanut is directly under your spine.  This places each ball of the peanut perfectly under the bundle of muscles that lie adjacent to your spinal column.  You simply roll back and forth on the peanut several times in the position, then move it up the spine about an inch and repeat.  Moving this way all the way up to the level of the big protuberant bone at the bottom of your neck takes only a couple of minutes, and is one of the best things you can do for knots along the spine as well as mobility of the spine (to be discussed in a later post).

That’s it!  Soft tissue rolled out…now it’s time to move on to mobility work.

Tonic and Me: Traversing the Winter From Hell

There is good news and bad news about getting old with cystic fibrosis.  The good news is that I am getting old with CF!  How great is that?  Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday.  I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.

Living with an unpredictable illness is not all mirth and laughter, though.  Some aspects of getting older are a bit more frustrating, at least for me.  This is where Tonic, a new iPhone/iPad app, enters my story.  As you probably know, staying healthy with CF requires more and more effort with age.  There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do…pretty much everything.  Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent.  This is poor design, but it is what it is.

I noticed it first with Advair.  I can never remember if I have taken it.  I don’t know… I seem to have a mental block.  The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc.  While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.

I have officially dubbed this past winter, “the winter from hell.”  For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months.  If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access.  IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used.  When you forget to do this, 1) brrrr, and, 2) the infusion takes forever.  Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins.  I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week.  Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item.  Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things.  Wink.  But I hate hospitals, and only go in if it is absolutely mandatory.

Enter Tonic.  As luck would have it, I was able to beta test Tonic this “winter from hell.” Tonic is an app that helps you to remember and track whatever you need to track.  Setting up Tonic is a simple task.  You simply make a list of all that you want to remember and track.  It took me about 30 minutes because my list of “tonics” was enormous.  When it was done, though, my trusty little iPad would bleep whenever I had to do something.  Take out med (bleep).  Infuse this (bleep).  Take this (bleep).  Eat (bleep).  Weigh yourself (bleep).  Eat more (bleep).  Trust me, the thing was bleeping all day, every day of each exacerbation.  But I was so completely on track!  I missed nothing.  Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it.  This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me).

Second, remember that the idea is to make your life easier, not to add another chore to your day.  When my life is so complicated that I really need help, I use Tonic.  But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background.  It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data.  You will find your own balance.

In summary, Tonic is just what I needed at just the right time.  I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things.  If you decide to give Tonic a try, let me give you two hints.  First, use it for all of the things you do for your health.  Everything. Really.  Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game.  For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate.

You can find Tonic on the web at http://www.tonicselfcare.com.

 

 

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