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 love list posts. They are so easy to write, and even easier to read. If only adopting the habit they propose were so easy…
But in this case, it is! Resistance training is not difficult to do. You don’t need to join a gym. There is no requirement for fancy equipment or expensive clothing. While a routine does take a little bit of time, you will begin to see and feel significant results in as little as 20 minutes 2 or (ideally) 3 sessions per week. You could multitask, and do your routine while watching Scrubs reruns. How simple is that?
Your own body weight can provide all the resistance you want or need, or if you are so inclined, you can purchase some very reasonably priced resistance tubing to use in your living room.
Here’s the trick. Don’t fall for the fitness magazine articles that suggest complex moves, or drop sets, or supersets, or unbelievably crazy-sets. Pick exercises that target multiple muscle groups like squats, lunges, front and side plank, or good old fashioned push-ups, and just start doing them! Here is why you should start today:
Reason 1) Resistance training is a friend of your metabolism. Why is this? As you begin to overload your muscles beyond what they are used to, you injure them slightly (don’t go for major injury…that doesn’t do any good at all). You cause little tiny microtears in the muscle fibers, and this is why you are sore one or two days later. But this is good news, because as your muscle fibers heal, they become stronger and bigger. You add muscle mass, and over time, this increases your metabolic rate.
How does that work? Body fat doesn’t do much. It just sits there and looks back at you in the
mirror. It doesn’t use up much energy. Heck, it doesn’t even need much of a blood supply since it requires so little maintenance. As a result, it burns very few calories.
On the other hand, muscle is very active. It requires food (glucose and amino acids) and burns tons of calories by just being there. Clearly, if you want to be a lean, mean, calorie burning machine, you want as much muscle as you can get.
Reason 2) Muscle, because it requires glucose and amino acids, is very sensitive to insulin. Insulin opens the doorway to to the little muscle cells, so glucose and amino acids can get in. If you are insulin resistant, as in Type II diabetes (and possibly CFRD), lifting weights will increase your insulin sensitivity as you build muscle mass. A finely tuned insulin sensitivity mechanism is required for a stable blood glucose level, which leads to good health.
Reason 3) This is a big one for me, and maybe you can relate. Building muscle and feeling and being strong physically is one area of my life where having cystic fibrosis doesn’t even matter! My lungs may not be the best in the gym, but I will take on any woman my age in a push up or pull up contest! This is a very empowering feeling…I have at least a modicum of control over my body which is otherwise at the mercy of my lung status. Now, some days my lungs even interfere with my time at the gym, and that is OK. I know that when I recover, I will be back, strutting around the gym with the big boys, knowing that my muscle fibers are no different than theirs:-)
If you have an illness other than CF, lifting may just provide the same benefit. Lifting weights is a very black or white thing to do. You do it and you see and feel results in as little as two or three weeks. You have control of this. It may not feel like you have control of much else, sometimes. But you do have control over this.
Reason 4) More and more studies are showing that well-designed resistance training programs in post-treatment management of cancer patients and survivors are beneficial in improving health status and quality of life. This is true in other chronic diseases as well. Weight training is anabolic, meaning it builds up the body. Often, treatment for illness is catabolic, or breaks down the body (think steroids or chemotherapy). While these treatments are necessary, we can counter their bad side effect of breaking down tissue by weight training.
Reason 5) Weight training is fun! Ok, maybe I’m in the minority thinking this, but stand by this statement. When you get over the initial “I have no clue what I’m doing,” and move through the “Oh my God this huts,” you begin to see improvement! And this is fun!
Are you ready to begin? I’m starting a YouTube channel where I will teach easy, and very modifiable exercises that anyone can start doing today. Check it out, and subscribe today!
Well, it’s been awhile. I’ve been a bit under the weather lately and haven’t posted anything as I’ve dealt with illness. Now, I have a PICC line, through which I am receiving antibiotics, and the magic medicine is starting to work, so…I’m back..
This current illness has prompted several ideas for blog posts, although up until now, I haven’t had the energy to act on the ideas. One topic that comes up frequently when I deal with my cystic fibrosis and it’s ever-present ups and downs is what my mind does with the very simple information that my body is not perfect.
Do you have ANTs? By ANTs, I mean automatic negative thoughts. Do you remember the last time you watched a colony of ants, as the workers stream in perfect lines to and from the ant colony with the single goal of procuring food and whatever else an ant needs to live a good ant life. Perfect, tiny little single file lines of ants, determined to stay in line and do what is expected for an ant to do.
This is the way unhelpful thoughts travel in your brain. They are a series of repetitive synapses that have traveled the same neuronal pathways in your brain so many times that they have worn grooves in the sand of your brain. Now, they are automatic, as are their emotional and behavioral consequences. So it is very appropriate for the acronym for “automatic negative thoughts” to be A.N.T. I’ve read that humans have about 50,000 to 70,000 thoughts per day, and that 90% of them are repeats. We think the same things, over and over and over. It reminds me of that ant in a single file line, doing exactly what the ant in front of him/her (probably him I guess) does, without question.
Here are some examples of my ANTs: “This disease sucks. You just got through two months of P90X, only to have to stop! You’ll never get through this 3 month program. IV”s again? I (sometimes I’m “you” and sometimes I’m “I” If you lived in my brain, you would have me committed.) already had 3 weeks of IV’s just a few months ago…My CF is progressing. My lung function probably stinks right now…God, what if it doesn’t come back. What if I am now on that downhill slope? Oh man, I am coughing so hard…what if I start to bleed and never stop? No one is here to help if I have massive hemoptysis…what would I do? WHAT? 103 pounds…oh no… You’re disappearing. How can you be losing so much weight? What does THAT mean? Do you now have to deal with CFRD and insulin, too? That would really suck. You know Julie, that CFRD usually means worsening of CF. The good days are over. Your luck has run out….” and on and on and on
They are automatic. I don’t try to think them. They just happen. And they’ve happened before. It doesn’t seem to matter to my brain that it is thinking useless, negative thoughts that it has already informed me of a million times, thank you. They keep on coming. I’ve tried to stop them..but that definitely does NOT work! You can’t successfully tell yourself not to think something. Just try…right now, try to NOT think of a pink elephant lying belly up in your living room. See? You can’t do it. Just by imagining what you don’t want to think, you think it.
But I’ve learned a trick in dealing with these thoughts. It’s come with practicing mindfulness, which simply means being aware of what is happening while it is happening. In other words, I’m watching my thoughts. And at the same time, I am watching what my body feels in response to these thoughts. It’s not pretty. What I see is a direct connection between negative thoughts and bad feelings. “Duh,” you say. “That’s a no-brainer!” Exactly. These processes occur below the level of your “brain,” or consciousness. But when you become conscious of them, something pretty cool happens. It turns out that you can’t be fully conscious of something you are doing that is harming you, and continue doing it. When you directly experience the fact that negative thoughts lead to bad feelings, you will appreciate that you have direct control of how you feel. All you need to do is decide to think alternative, more positive thoughts.
So instead of, “Your lung function probably sucks right now!” I can gently decide (consciously) to change the thought to, “Yes, my lungs are a bit under the weather now…..and that is why I am taking care of them by resting and infusing wonder drugs. Thank God I have health insurance and access to great health care!” The ANT will try to take over, and I will have to be very alert for this, as the grooves run deep. But as long as I catch them, I can always substitute a life and health affirming thought for the negative one. Over time, the affirming thought grooves will deepen and the negative grooves will smooth over from disuse.
Try to catch your ANTs. Remember, don’t try to force them away (remember the elephant). When you catch and ANT, replace him with an affirming thought that carries with it positive feelings. Is this Pollyanna, New Age garble thinking? I don’t know. But would you rather feel bad, anxious, worried and depressed, or hopeful and grateful for what is good in your life? Which feelings do you think are healthier overall and better for you? Does being depressed and worried help you in any way at all? Will it change the outcome? I would argue that being optimistic and grateful can change the outcome…for the better. So why not give it a try?
Today, I am taking a crash course in internet marketing. Why? This is what I keep asking myself.
The reason is that I really want to figure out how to get my upcoming e-book, “The CF Wellness Boot Camp” out to as many people as possible.
To do that, I am learning, I need a “LIST.” So I am madly learning about how to create “opt in” boxes everywhere, and how to create an e-newsletter (to entice ya’ll to sign up to my “LIST),” to use FTP to do weird things to my blog, to tweak HTML to make things look better, and generally, to do all kinds of things that ARE NOT IN MY JOB DESCRIPTION!
But, alas, one of my strengths is “love of learning,” so I should be very happy for a very long time. Please be patient with me. I have great ideas for the newsletter, including exercise instruction and demonstration, interviews with nutrition and stress management gurus, and so much more. Please sign up. I promise you won’t be sorry!
The following is a quote from experts in the field of “Appreciative Inquiry,” a technique used in coaching (as well as other endeavors) which draws on the best of the past to inspire the present and create a better future.
“We see what we look for and we miss much of
what we are not looking for even though it is
there… Our experience of the world is heavily
influenced by where we place our attention.”
Stavros and Torres
How can we apply this to our quest of living well within the context of a chronic illness?
The challenge in writing about this topic is to not come off sounding like a rose-tinted fluff producer. Believe me, I understand that a chronic disease brings with it significant struggle, frequent frustration, and unsettling uncertainty. Sometimes, when someone tells me that I should “look for the positive” in a situation that seems unbearable, I get downright mad. “THERE IS NOTHING POSITIVE HERE,” I want to scream. In fact, until the initial emotion is confronted and worked through, my visual field can include nothing positive about the situation. I don’t believe I am alone regarding this.
So step one in looking for the “opportunity” in a health challenge must be confronting and understanding the grief, anger and fear that accompanies illness. You can’t ignore or look past these valid emotions in order to get to the other side, where opportunity lies.
As I write this, my brother Tom lays in a hospice house in Omaha, Nebraska, where he will spend his last days and weeks before succumbing to cystic fibrosis. I love my brother more than I can describe. He has been a role model to me, an example of how a fighting, stubborn spirit can overcome lungs that have been failing him for over a decade. He has been like the Eveready Bunny for over 10 years, refusing to stop and give up, despite pulmonary function numbers that would cause most people to roll over and die. Instead, Tom has maintained a job, maintained friendships, and continued to amaze his healthcare team (and family) with his resiliency.
Now that my PICC is out, I am traveling to see Tom in a week, to say good-bye and to tell him how much I love him. There are obviously a lot of emotions to work through here…I am very sad, and I am very afraid of what I will see when I walk into his room. But there is absolutely no way of ceasing this opportunity to say good-bye without acknowledging and facing my own fear of looking at Death by CF. I have been letting this fear get in the way of getting close to Tom for years…just as I let it keep me from Kathy when she was ill. It is the same fear that made me cover my ears and go to the far reaches of the house when I was a young child, and Tom or Kathy was doing a treatment and coughing their brains out. I have been missing the opportunity of knowing my brother better, because I have let my own fear and sadness cover my heart. This has been a great example of how to not find opportunity in a bad situation…until now.
Fortunately, I see now that the reward of knowing and loving my brother will come with facing this fear, not avoiding it.
Similarly, the reward and opportunity found in any health challenge can only come after living with and through the emotion that accompanies it.