Things That Make My Lungs Feel Awesome: Exercise

PSA: Video games will not make your lungs feel awesome.

As an "old man" with CF, I've figured out over the years what things I can do to make my lungs feel awesome and what things I can do, or not do, to make them feel eh, not so much. I realize that, as with everything with CF, some of these things will work for others while some may not. Here's what I do know, nothing changes unless something changes. So, if you see something in the coming weeks that you may want to try, give it a shot. A real shot. A real honest shot. I used to try and take shortcuts with my lungs when I was younger and it took me many years, and lots of pain, to realize that there are no shortcuts when it comes to health. Being at our best health-wise comes down to two things - good decisions and hard work.

So with that, here is probably the #1 thing that I have found make my lungs feel awesome...

Exercise.

You probably saw me going there. We've all heard it and we probably hear it quite a bit. But what exercise exactly? Well, the short answer is to do any exercise that you'll commit to and do consistently. For me, that has been High Intensity Interval Training (HIIT). According to the ever so wise Wikipedia, HIIT is "a form of cardiovascular exercise. Usual HIIT sessions may vary from 4–30 minutes. These short, intense workouts provide improved athletic capacity and condition, improved glucose metabolism, and improved fat burning." Did you catch that? Improved athletic capacity (ie better shape, ie in general, better lungs) and improved glucose metabolism. For those of us in the CF community, that's a win-win. Now, some of you read "improved fat burning" and thought, "My doc says I cannot lose any weight!!" and therefore dismissed HIIT as an option for you. Can HIIT promote weight loss? Yup. Does it have to? Nope. If putting on weight is a struggle for you, you can safely do HIIT but you must increase your calories. You must eat before your workout, to give your body the energy to carry you through the workout (and not burn your fat in the process) and you must eat after your workout (to aid in the recovery process and not allow your body to use its fat stores). It absolutely can be done. And, if you want an even better shot at maintaining, or even gaining weight after including some HIIT into your routine, may I suggest that you add a weight lifting routine to your schedule as well.  Again, you must eat right to take full advantage of your hard work, but it can be done! 

And back to the lungs, HIIT (or other cardio exercise) is like doing an albutertol treatment at the gym. I was actually in a study that showed this was the case. Exercise opened up the airways, and kept them open for an extended period of time. Plus, doesn't it just come back to the old tried and true phrase "if you don't use it, you lose it"? If you don't use your lung (function), you'll lose your lung function. I like to think of my lungs as a muscle I'm working out just as I would workout my chest, biceps or legs. Instead of lifting weights to work out my lungs, I'm taking deep breaths. I'm coughing. I'm pulling for air (in a good way of course!).

The hardest thing about exercise is getting starting. Most people I talk to (CF or not) don't exercise for two main reasons: time and knowledge.

This just made me laugh.

I don't think I've ever met a person who thinks they have a lot of time to spare. It's in our human nature to always feel busy...even if we're not. The bottom line is we all make time for things that are important to us. I have not been writing in this blog consistently for much of 2014. Reason? I have felt like I've had no time to devote to writing. I've felt pulled in a million different directions and didn't think I had any time to spend on RSBR. The truth, I have been busy, but I've been devoting my time to things that I either felt were more important, have the potential to have a greater impact on the CF community or things that I enjoy more. So I've had plenty of time, it's just been focused on other things. (Note: One of those is exercise which I devote about 2 hours a day to). To make time for exercise, it must be important to you. You need to find some kind of external or internal motivation for doing it and doing it consistently. If I gave you 1 million dollars to exercise daily, would you do it? Of course! You'd make the time no matter what! Unfortunately, I can't pay you to exercise (I wish I could), but I would argue that better health is worth a lot more than 1 million dollars (to me anyhow!!).

Ask Unknown Cystic if he thinks it was worth making the sacrifice to exercise every day. He works A LOT and didn't think he'd have anytime to fit exercise into his life. What did he do? He got creative! I believe they call that "if there's a will there's a way". He decided that if he was going to be working, then he'd be walking too. Check out the results he's had after walking on a treadmill during his working hours for the past year: One Year of Using a Treadmill Desk. The proof is in the pudding.

I understand that many of us can't afford a treadmill in our home, but don't let that be your reason for dismissing his story. The point isn't that we all must walk while we're working, the point is that we all must just do something. Commit. To. ANYTHING. Active.

Forgive me if I'm making it sound too easy, but in reality, it can be. It's just a matter of making it a priority and doing it. Don't have 1 hour a day, how about 10 minutes? Is 10 minutes an optimal amount of time for exercise? Nope. Is it more optimal than 0 minutes? Absolutely!

How can you get started? I'm glad you asked. Pick a time today that you're going to do something active and commit to doing it. Reading this really late at night? Pick a time tomorrow. How much time? At least 10 minutes and no more than 45 minutes. What's active? Anything that makes it harder for you to breathe as a result of exerting effort. That could be from sitting up and down on your couch multiple times to running 5 miles. Whatever it is, if you did nothing so far today that could be considered active, you'll already be two-steps of today, tomorrow (or later today!). 

This is all about improving yourself. Not being better than anyone else, just a better version of yourself. You can do it, just take the first step...of many, many steps.

Need help? Just ask. You can leave a comment here or find me on CysticLife.

If you want to get involved in the conversation, use #awesomelungs on Twitter and tweet @ me yo!! I'd love to link to any blog you write about what you do to make your lungs feel awesome. Send me a link to your blog so I can share it!!

I won't guarantee that it will be fun, but it will be worth it!!

Can You Really Gain Back Lung Function?

Question from reader

Question: 

So I know I've read things in your blog and have heard stories of CFers who had lung functions in their 30s and somehow managed to get it all the way back up to the 50s, 60s or even 70s. I'm pretty sure I even saw that you yourself were down in the 30s at one point. Do you have any idea how people (or yourself) have gained so much lung function back? How many breathing treatments a day does it take? How many hours of exercise? How much of a miracle?

Last year I was training for a marathon with my lung function in the high 60s, doing great. In July, I ended up being rushed into emergency surgery for a bowel obstruction and twisted intestine and a month afterward my lung function plummeted to the 20s and 30s. A year later I still can't recover. My lung function is now 27% and I'm going next month to meet a transplant team. It's super disappointing to have your feet knocked out from under you like that and even more disappointing when I've quadrupled my breathing treatments, tried exercising my butt off, and prayed every night for a miracle to no avail. I know there's a point when you're lungs can't repair themselves, but I also just can't believe that could happen in ONE month after surgery. I'm just wondering if there is something else I could be doing that others have done.

Answer: 

Thank you for taking the time to send me an email. Hopefully I can help you in some way :)

Generally, the people I see bounce back from lower lung function are from 3 camps - 

1) Never took care of themselves, almost died and got scared into changing

2) Took okay care of themselves, got in a routine that didn't change much, slower decline and then finally realized that if they continued doing what they were doing they were going to die 

3) Took great care of themselves, hit a rough patch or a big event, sharp decline and then bounced back after changing a few things up.

There is of course other situations out there, but these are the three main ones that I see. There are also some who experience one or more of these situation during the course of their lifetime (If your curious, I was mainly #2). 

To answer your direct questions, it's generally increased breathing treatments and a regular, intense and consistent exercise regiment that gives people the best chance to bounce back. For me, it took 18 months of running 6 days a week and doing 4 treatment sets a day (4 to 6 hours devoted to CF care) for me to go from a 50% to a 75% (I went into the hospital in the 20's and after a week in ICU I blew a 31%). I've been able to maintain my 75% by doing 3 to 4 treatment sets a day and exercising 6 days a week for the last 3 years. I devote 1 to 2 hours a day to some type of exercise and/or physical activity.

It's funny that you mention the bowel obstruction as the catalyst for you to see a sharp decrease in lung function. One of my largest declines in lung function also came after a bowel obstruction and removal of part of my small intestine. I've been able to get most of that lung function back, but it's been over a decade (obviously a lot happened in the last ten years, and much of it was me not taking great care of myself, or as some people call it, college.)

With all of that said, here's my advice: Put yourself in the best position to succeed in and every day. Treat each day as a new day to be your absolute best and better than the person you were the day before. Don't get discouraged by the numbers. It's much more important how you feel. If you don't think you can push anymore, push harder. A lot of gain can be made during the time of resistance. Sleep is just as important as activity. This doesn't mean that you sleep the day away, but it does mean that you may not be able to have any late nights for a while. I always found that my best mucus clearing workouts came first thing in the morning as the sun was rising! If your aren't seeing the results you want, either by the way you feel or by the numbers, change up your routine (medications, exercises, treatments, breathing techniques, etc). And probably most importantly, never accept a place you don't want to be and never stop pushing until you hit your ceiling. How do you know you have hit your ceiling? You never will, so that means you're in this for the long haul. The only way I'll know that I maxed out is after I'm dead; know what I'm saying?

If you do what I outlined above, and you still don't see the results you'd like, that's okay! You'll still have your head held high because you know you gave it your best shot. Remember, failure only occurs when you don't try. If you try, no matter the result, you're a winner.   

Please let me know if you have anymore questions!!

.............

If you have any questions that you'd like to send my way, please email me at ronnie@cysticlife.org!

Cystic Fibrosis ALWAYS Gets Worse

Cystic Fibrosis always gets worse. It can't get better once you reach ____% lung function. Once you start going into the hospital multiple times a year, you'll probably go multiple times a year for the rest of your (short) life. When you lose lung function, you can't get it back.

Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.

I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?

Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...

I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.

That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.

If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.

It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.

What's it going to take for you to change?

And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.

So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.

If you'd like to get healthy, do what you do in spite of CF. No matter how CF decides to act tomorrow, you just make sure to out work it. If your disease is being a little more aggressive, than you must be that much more aggressive. If things are getting better and CF is slowing down a bit, celebrate by kicking it's booty even harder.

I know you can do it, now you just have to believe that you can and will do it!!

Vitamin D Levels Tied to Lung Health

Serum vitamin D levels had a significant positive correlation with pulmonary function, most prominently in patients with a history of tuberculosis (TB), data from a large cross-sectional study showed.

...

In the subgroup of patients with a history of pulmonary tuberculosis, the absolute difference in FEV₁ by 25-OHD level was four times greater than the difference in the overall population, they wrote in the Journal of Clinical Endocrinology & Metabolism.

...

"The precise mechanism for this phenomenon remains unknown, but it has been suggested that vitamin D accelerates recovery from infection by enhancing innate immunity via upregulation of antimicrobial peptides," they added.

Observational studies of vitamin D and respiratory function have yielded mixed results. Clinical trials of vitamin D supplements as prophylaxis against respiratory disease also failed to demonstrate a definitive association, the authors said.

...

Comparing the top and bottom quartiles of 25-OHD, the authors found a difference of 229 mL for FEV₁ in the subgroup of participants with a history of pulmonary TB (P<0 .01="" p="">

The study had some limitations, namely that it was cross-sectional so reverse causality could not be ruled out. Also, the overall low 25-OHD levels in the participants limited the authors' ability to adequately estimate optimal vitamin D levels for lung function. Finally, data on sun exposure and dietary or supplementary vitamin D intake were not available.

To read the full article on Medpage Today, click here.

Lung Workout

At-home workout challenge - Here's my workout for the day:
25 pull-ups
50 hammer curls
50 tricep extension
50 step-ups
50 push-ups
50 v-ups
50 incline press
50 shoulder press
50 leg press
50 calf press
50 face smashers
50 jumping jacks
50 overhead tricep extensions
50 straight arm pull downs
50 pec deck flys
50 jumping jacks
50 mountain climbers
25 pull-ups

You don't have to do all of these, especially if you are just beginning to workout. Pick 5 if you are a beginner, 10 if you are a moderate and try all if you think you can handle it.
______________

My blog today actually has to do with the workout posted above. When I do this, I move as fast as I can through each exercise and give myself as little rest as possible. It becomes just as much of a workout for my lungs as it is for my muscles. I work up quite a sweat and I'm taking extremely deep breaths almost the entire time. I wanted to throw down a challenge for all of you today.

If you already workout regularly try timing your workouts this week and each day you exercise, try to go a little faster than the day before. The workout above took me 35 minutes. If you don't work our regularly, maybe you can pick 5 exercises from above and time yourself doing them. After you're done, right down the time. Take a day off, and then the following day, do the exact same exercises and try to beat your time from the previous workout. Do that for a couple of weeks and let me know how that feels. If it starts to get too easy, pick 5 more exercises. If it gets too hard, back off a little :)

The key to this workout, and really any workout where we want to hit both muscles and lungs, is to keep moving at a fast pace the entire time. It may feel funny at first, but if you stick with it, I promise you'll like the results. With me, I don't even pay as much attention to form as I do pace. Right now, I'm not trying to bulk up, but I am trying to expand my lungs. The only way to do that is to work them out!!

Anyway, thought I would throw this out there for those that wanted a challenge or a new workout idea!

Sinus Surgery Won't Aid Lung Function in CF

NEW YORK (Reuters Health) Jun 28 - Endoscopic sinus surgery doesn't improve microbial pathogen load or pulmonary function in young cystic fibrosis (CF) patients, according to a retrospective medical record review.

"Prospective studies are needed to evaluate potentially short-lived effects of surgery on these variables, as well as to assess subjective or symptomatic improvements from a quality-of-life standpoint," Dr. Alexander J. Osborn of the University of Toronto and the Hospital for Sick Children and his colleagues conclude.

Treating inflammation of the upper airways can improve pulmonary function in asthma patients, Dr. Osborn and his colleagues note in the June Archives of Otolaryngology-Head and Neck Surgery. Nearly all CF patients suffer from rhinosinusitus, they add, and the severity of these symptoms has been tied to worse pulmonary function.

To investigate whether the unified airway model might hold true in CF as well asthma, and determine if treating sinusitis might improve pulmonary function, Dr. Osborn and his team reviewed medical records for pediatric CF patients who had undergone endoscopic sinus surgery in their practice.

The 41 patients in the study, whose average age was about 11, underwent 91 procedures in all, with a median of 2 per patient. The researchers excluded procedures performed within 2 years before or after another surgery, to ensure that preoperative values represented a patients' real baseline state. This left 56 procedures for analysis.

Using several different measures of pulmonary function, the researchers found no differences before and after surgery. And their analysis of the 62 procedures for which pre- and post-operative cultures were available showed no effect of sinus surgery on microbial pathogens.

Sinus surgery likely helps asthma patients' pulmonary function because the sinonasal area may be the sole source of inflammation in these patients' airways, Dr. Osborn and his team suggest. "In contrast, CF leads to chronic infection of both the sinuses and the lungs," they add. "Eliminating the inflammation or bacterial load in the sinuses still leaves a significant inflammatory source in the lungs."

The lack of improvement in pulmonary function and microbial colonization seen in the current study "does not obviate the need for surgery in these patients," the researchers add, pointing out that patients do see symptomatic improvement after the surgery.

"The lack of effect of endoscopic sinus surgery on pulmonary function test results and respiratory tract microbial pathogens in our study highlights the need for prospective assessments of postoperative quality-of-life improvement and of adjunct medical therapy efficacy," they conclude.

Original Post: Medscape Today

SOURCE: http://bit.ly/mJcgjY and http://ow.ly/5uhwr

50 Day Hospital Stay

Question from a reader:

What was the cause of the 50 day hospital stay? Have you always exercised? I did but then stopped being obsessive about it which is when I started having problems. I think I probably had an infection that I let go too long and damaged my lung. (Stubborn, stubborn, stubborn).

My Answer:

My girlfriend (now wife) and I went to China for 3 weeks and while I was there I caught some weird chest cold. We were all sick and I thought I had fully recovered but then my last couple of days there I started coughing up a ton of blood (1/2 a cup to a cup for 3 days in a row). I stopped my DNASE and Vest as I usually do with a bleed and of course my lungs suffered for that. By the time I got back to the states I couldn't walk more than 50 yards without taking a break and I was SATing in the low 80's (my "true" SAT ended up being in the 70's determined by blood gas). They wanted to intubate me in the ER but I refused and had them put me on Bi-Pap. I spent 3-4 days in ICU and then 47-48 on the floor. It was nuts! It was also a huge wake up call. I had put my health on the back burner to try to do as much as I could with the various projects I had going. I was also traveling a lot so my treatments often got pushed off.

As far as working out and exercising, it's always been a part of my life. I played sports (football, basketball, baseball, soccer) from when I was 6 or so until I entered college. I then got right into coaching football so I would often work out with the guys and I had to remain active to coach. I left coaching in 2004 and I started to become less active. I would start working out again and it would last 2 or 3 months but then I would find all sorts of excuses to stop. I have been on a pretty consistent hospital plan since highschool and I don't think I've waited too long to go in very often. I realize that I have to go in and get a tune-up to continue living the lifestyle that I am accustomed to. Up until two years ago I've averaged about 90 days a year for the last 3 years prior and 75 days 3 years before that and so on. In highschool I went in for about 30 days a year. I try not to be too stubborn when it comes to that cause I know that the damage done can sometimes be irreversible.

Since recommitting myself to increased treatments and consistent exercise I've knocked my average hospital stay time in half and also increased my lung function. You can find my PFT history on RSBR, but as a quick snapshot - I steadily declined from an FEV1 of about 75% since 2003 until I hit rock bottom to an FEV1 in the high 20's in 2009 (this was not my baseline at the time but what I had after my trip to China - my baseline in 2008 was around 55% or so). I've now been able to get my baseline back up over 70% and feel like I have literally turned back the clock almost 10 years!

Thanks for the questions, keep em coming!!

28 years old and one regret. Not bad.

by Michelle Matta

When Ronnie asked me to do a guest post I was excited to do it immediately. I have a lot of disability-paid hours to spare, tons of time during treatments for my 24% lungs, and a mind that needs a break from anticipating a call that is coming anytime. A call to tell me whether the doctors think its time to list for transplant following the assessment I did 3 weeks ago.

The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.

I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.

I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.

And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.

If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.

Note from Ronnie: Thank you SO MUCH Michelle for taking the time to write this pointed and powerful guest blog. I've had the opportunity to share various emails with you and one thing is for sure, your desire to help others is very clear. You explicitly said to me "I hope my story helps someone out there". Well Michelle, I can guarantee you that this will help more than one. Sometimes, sharing our one regret can be more powerful than sharing our many accomplishments. Thank you.

My New Year's Resolution...

...is not to make a resolution. Not that there isn't anything I want to get done or goals I want to meet, but I'm not going to tie them to any one day. If you look up resolution in the dictionary you'll find something like "a firm decision to carry out an action", well, I did that a long time ago. Since the day I was able to form my own thoughts, I've chose to live and more importantly, to do whatever necessary to live up to a standard that I've set. I admit, there has been times that I've been off track, but something always happens to whip me back into focus.

2009 proved to be a year that got me back on track. I think that in the couple prior years preceding, I had become comfortable with my lung function hovering around the low 60's. It took a crash and burn in the beginning of 2009 to snap me out of my comfort zone. Many good things have come out of that, but the most powerful has been getting my attitude back that "just being comfortable" is not acceptable. So actually, I changed my mind, here's my resolution for 2010: I REFUSE to be comfortable with my lung function at any point this year!

So, what's your resolution for 2010?