My New Treatment: O to the 2

I recently started a new treatment that was probably long overdue and needed for quite some time. At the request of our brand new adult CF doctor, I did a 6 minute walk test before I was discharged from my last hospital stay (May). She wanted to rule out anything funky as to why I wasn't recovering quite as quickly as I did before, and the 6 minute walk test was one of the tests she ordered to get more information on my health status. It was a good thing she did.

Leading into the test, I informed them that I would really push it because that's exactly what I do in the gym. I didn't just want to casually walk to see how my body would respond. I wanted to really put my body under some stress to see how it would respond. I walked pretty much as fast as my short little legs would take me. In 6 minutes, I walked .4169 miles, but by oxygen saturation went from a baseline of 93% (which was actually a little lower than normal) to 82% about 3 minutes into the walk. I required 4 liters of oxygen to keep my o2 saturation above the "acceptable" number of 88%. In short, I failed the test.

I was far from disappointed. In 2009, I did an overnight sleep study that showed my oxygen saturation dipping to the lower 80's when I slept. With that info, I was prescribed an oxygen concentrator to use at night with 2 liters of oxygen flowing into me as I slept. 2009 was probably the first year in over a decade that I didn't wake up with a headache and actually felt rested in the morning. Why did I put up with sluggish mornings and headaches for a decade? Only thing I can think of is ignorance. At the time, I don't know that I even recognized oxygen as a treatment option while I slept. Starting oxygen overnight was an absolute life changer for me.

So, with that in mind, I had high hopes for oxygen supplementation during my workouts. I certainly was looking forward to (hoping for?) getting an extra boost during my workouts and not experiencing fatigue so quickly.

After setting up everything with home health, I received 6 mini oxygen tanks and a shoulder bag to carry the bottle around. I am supposed to use 2 to 4 liters depending on the vigorousness of the exercise. Based on my needs and consumption, I am allowed up to 22 bottles a month. (So far, that's been plenty). The first change I made was exchanging the shoulder bag for a backpack. Walking around the gym with a shoulder bag was pretty inconvenient and the backpack has proven to be a valuable upgrade.

So, have I noticed any positive effects from the oxygen supplementation at the gym? Honestly, nothing stands out, but it is noticeable. I'd say the most obvious impact is recovery time. I am certainly able to "catch my breath" faster and resume my work out. There may be a bit more muscle endurance (especially for big muscle groups like legs), but I'm not totally convinced of that. Even with the minimal noticeable effects, it's still be a great decision to start the oxygen supplementation at the gym. We of course all know about the stress that the body, especially the heart, goes through when it's deprived of oxygen, so there's no doubt that is something that I'd like to avoid.

There are potential negatives for some of you out there if you're deciding whether oxygen supplementation during exercise is right for you.

You have to keep up on your oxygen orders. This is just one more phone call to make and schedule to coordinate among the many we are already doing.

It's another potential insurance battle. I ended up having to do another 6 minute walk test that was documented in a different way (failed that one also) and my doctor had to write a special letter justifying it's need and make multiple phone calls before it would be paid for.

One more thing in your already full arms. I'm quite a sight walking into the gym. I usually have one (or two) kids in my arms, my water bottle, phone, headphones around my neck, and now oxygen backpack on. I completely realize that this is a first world problem ;)

You'll get strange looks. I'm convinced that most people at my gym believe that I'm doing some sort of altitude training. For those at the gym that have the courage to actually ask what's going on however, it's a great opportunity to introduce the world of CF to them.

Conclusion: None of the potential negatives above outweigh the potential positives for me when it comes to oxygen supplementation while exercising. I believe it's been a good decision for me and one I believe that all who see a drop in their oxygen saturation while exercising should at least consider.

**As a bonus, I don't get strange looks anymore when I cough. I mean, the guy on oxygen has to cough right? As I said above, I get strange looks, but they have more to do with a dude under 70 wearing oxygen. Double bonus - I don't think people look at me as the SARS guy or Captain Contagious like they use to when I cough my head off...although in a weird way, I kind of enjoyed that ;)

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!!

Started a New Routine: StrongLifts 5x5

Are you looking for a new routine to breakup the monotony of you current one? Or looking for something that is good for beginners? How about something that only has you lift weights for 3 days a week at 45 minutes a day? Something super easy and straightforward that even has an app that you can use to track your progress? Than I have the workout for you!! (Man, I definitely think they should use me to pitch their free product ;) )

I recently started the StrongLifts 5x5 program and I absolutely love have organized, easy and quick it is. The last thing I want to do in the gym is think, and this take all of the thinking out of it! I downloaded the app to track my progress and to tell me what to do every single workout and even tell me what weight to use. Couldn't be easier.

It's called the 5x5 program because there are only 5 different lifts that you have to "master" and each lift will be done at 5 sets of 5 reps (except for deadlift which is only 1 set of 5). You will only do 3 of those lifts on each day of your workout. That's it.

The five lifts are...

Squat


Deadlift


Bench Press


Overhead Press


Barbell Row



I'll keep you updated on my progress and would love to hear if any of you start this program as well!

Limited Exercise Research

I thought this was a very interesting article highlighting the limited research on exercise. I've highlighted the biggest take-aways if you don't have the time to read the whole thing.

“A lot of physiologists come into the discipline because they fundamentally like exercise,” Martin Gibala, an exercise physiologist at McMaster University in Ontario, told me. “But you learn very quickly that there’s not a lot of research money out there to fund applied studies.” On matters as simple as how many sets and reps best promote muscle growth, Mr. Gibala explained, “We can’t nail down the answer.”
Even if the funding were there, Mr. Gibala says, “That’s not state-of-the-art research that you’re going to publish in the best journals and advance your career.” Instead, he says, physiologists study questions of basic science, “like the molecular signaling proteins that regulate skeletal muscle adaptation.”

I also thought of the CF community and what we're trying to do in promoting patient-centered or patient-driven research when I read this...

The human body is an adaptation machine. If you force it to do something a little harder than it has had to do recently, it will respond — afterward, while you rest — by changing enough to be able to do that new hard task more comfortably next time. This is known as the progressive overload principle. All athletic training involves manipulating that principle through small, steady increases in weight, speed, distance or whatever.
So if your own exercise routine hasn’t brought the changes you’d like, and if you share my vulnerability to anything that sounds like science, remember: If you pay too much attention to stories about exercise research, you’ll stay bewildered; but if you trust the practical knowledge of established athletic cultures, and keep your eye on the progressive overload principle, you will reach a state of clarity.

I think we all see people in the CF community that are doing the things and making the choices that work for them. In some cases, there is a large cohort of the CF community that has bought into a certain lifestyle or treatment or "culture" that seems to be having positive effects. I look forward to identifying those a doing what we can to promote research around those areas.

If you have any comments, I'd love to hear them.

http://www.nytimes.com/2014/05/25/opinion/sunday/fitness-crazed.html?_r=1

The Choices We Make

When I made the decision to come to the hospital, it was not an easy one. The way I was feeling, my energy level, my increased cough, my increased mucus production, my lung pain and my lung function test results all pointed to an easy decision, but it was certainly not so.

Mandi and I had been planning on a trip to South Carolina with my father-in-law and mother-in-law and family friends for months. The tickets had been purchased the schedules rearranged and we were ready to go. That "we" is now just Mandi and Mckenna. They left on a plane for South Carolina this morning.

It's funny as it seems every time there is a decision whether or not to come into the hospital, there is always a balancing act. I have to decide how to weigh the perceived sacrifices with the hopeful
outcomes. And really, the hopeful outcome is the only reason I come into the hospital. If I didn't have that hope that I could and would get better there be no reason for me to be in here. Thankfully I still have that hope, and have never lost it. When I come in for a tune-up, I do get better. I do become the best version of myself. It make take 2 weeks, 3 weeks or more, but it does happen.

So what led to this decision? The easy answer is that my lungs felt beat up. I was unable to exercise like I'm used to. I found myself getting winded after a flight of stairs. It was hard to take a deep breath because of the pain that I experienced each time. With me, it becomes a vicious cycle. Less than effective workouts contribute to more mucus buildup which contributes to more inflammation which contributes to a harder time breathing. It's up to me to break that cycle. Sometimes I can do it through increased treatments or increased exercise, but other times it takes the decision to come in for a tuneup.

When I went to clinic and talked it over with the team they thought it was a pretty good idea that I come in. They knew about my looming trip to South Carolina and told me that I would have their full support if I decided to try to hang on and make the trip. We all knew that the decision to come into the hospital would mean that I was choosing not to go to South Carolina but to go into the Hole. It was not an easy decision, but there is no doubt that there was a right one. I had to put my health first.

I don't have many regrets in life, but as it relates to CF, I have one big one. There was a time in my life when health certainly did not come first. My social life came first. My work came first. My girlfriend was my priority. My friends won out over my treatments. Delaying hospital stays to go on vacation was the norm.

And after years and years of making those decisions and putting everything else in front of my health, I am now paying for it.

I have to work so hard now to stay healthy. I have to put in so much time each day to keep my energy at a level that my wife my daughter deserve. So much time is spent doing my treatments or at the gym that I wish it could be spent at the park with my daughter. I now have to miss family vacations to come into the hospital.

If I would've kept my health first, as the first priority in my life, would I have to make the sacrifices now? Of course I do not know the answer for sure, but I'd be willing to bet that I wouldn't have to work so hard now. I wouldn't have to take so much time away from my family when life is really important. I probably wouldn't be missing this trip to South Carolina.

That's the bed I made and now I lay down in it.

So what's the point? If you're reading this and you're struggling with putting your health first, I beg of you, don't make the same mistakes that I did. There will come a time in your life that you will wish you didn't have to work so hard because of choices in the past. When we were younger many of us thought that we were just “living life”. Let me tell you as a man with a wife and a daughter - This is life. I'm now in a life that matters. I have two beautiful girls who count on me to be at my best. That doesn't mean that if you don't have a family in the future you won't be living “the life”. But I promise you that there is something down the road worth sacrificing for. The truth of the matter is you're going to have to work hard now or work hard later, but hard work and sacrifice will happen.

I encourage you to make that sacrifice now, and to work hard now, at the chance that you won't have to work so hard later.

Running Rehab: An Unscientific Experiment

Guest post by Kay

After being diagnosed with CF at age 21...I had spent the better part of my life telling myself that I was an exception to the rule, that my case of CF was mild and falsely thought there were probably no others with the disease that were doing so well. Sure, I had my moments during exacerbations when I worried and wondered if I’d get to see my daughter grow up...but for the most part I did as I pleased and was hospitalized on average once a year. I’d been a runner since h.s. track and when my daughter was young I had a sign taped to my alarm clock that read “RUN OR DIE” so I’d get up and run before her Dad went to work. But over the years my FEV1 had inched down slowly and I’d left the world of the moderately affected and dipped under the 50% FEV1 level and into the world of the severely affected. Life got harder. It became difficult to jog. I’d get so winded after just a quarter mile jog that I took to doing a jog/ walk type of workout and even that was so hard I began to skip more and more days. My daughter had asked me to run a 5k at a 1/2 marathon she and her dad were doing and when I told her I couldn’t even run a mile she gave me a bit of a hard time saying “anyone can run a mile...you’re just using CF as an excuse”. Ugg. So a week later when my nurse coordinator forwarded a Jerry Cahill video where he was running with oxygen...I was all over it!

I contacted Jerry through Facebook and he told me about using a wrist oximeter and putting the “tank” into a camelback backpack for jogging. I asked my Doctor who always had a witty sense of humor if I used oxygen for exercise if I would become oxygen dependent...his reply “we are all oxygen dependent” haha. But “no, it won’t mean you’ll need to supplement O2 for everyday things”. It took a few weeks and a little experimenting, first with liquid oxygen (not good it can’t take the jarring of the jogging and all the O2 would expel after just a short distance). I exchanged 3 back packs until I got one that had more padding and was comfortable to carry the M6 tank. And then I got in a routine...quickly running 3 and 4 miles at a time. I decided to train for the first annual “Run to Breathe” that Jerry was organizing for BEF in Central Park and invited my daughter to join me. Jerry provided encouragement to the jogging posts I would make on Facebook and we joked about being the last ones on the 10k course. Raceday came and the adrenaline and crowds had me jogging at a pace much faster than home. Central Park is relatively flat in comparison to the Fox River Valley where I trained. I was pleased with the time and my daughter and I had a fabulous 4 day trip to NYC.

Back home from the trip and I wasn’t feeling particularly well. When I went to the clinic I had the worst PFT results of my 49 year old life with Cystic Fibrosis. FEV1 was 36%. It scared me. Badly. I had been getting to know other CFers through social media and a few were on the transplant list. One was at 30% FEV1 so a personal score of 36% was alarming. I did not understand it. I’d been running about 20 miles a week and instead of getting better I was getting worse. I’d lost a lot of weight which had never been a problem as I am pancreas sufficient. But with all that running I could not eat enough. I got a tune up and recovered to 42% where I stayed for a couple years.

Chicago winters can be rough and long. This one has been the worst in my memory with temps dipping down to -18 degrees F at times. I was sick in October, choosing to do a 21 day tune up, and then mid December a bug that was going around at work settled in which took me six weeks to get over with Cipro and Prednesone. January rolled around and I still wasn’t myself and I looked at the option of IVs again and turned around and literally ran in the other direction. I decided to hire a running coach and see if having someone with expertise in building a program could help motivate me. I’d been reading the journey about those pre and post transplant go through with a mandatory “rehab” period both before and after. So Coach GP and I embarked upon a Running Rehab program for these old CF lungs of mine. He said “I’m going to be in your pocket”. By that he meant he would hold me accountable for the workouts and text me and ask me what I’d done each day. Coach is in the NYC area and travels a lot, so I’ve never met him...but working virtually worked very well. We spent a couple weeks seeing what I could do and just getting used to the idea. It was all on the treadmill as cold air is not my friend. My knees hurt, I was tired...but determined. Then he gave me regimented workouts that included interval training and progressive runs. I chose to just “do as I was told”. It made things simpler to just be assigned a workout and do it and not have to make a daily decision on what to do and how far to go. Wimping out was not an option. I let him be the boss of my schedule. The schedule was tough as I work two jobs but I fit it in most days, sometimes getting to the gym at 8pm, sometimes awakening at 5am to fit it in. A month went by and my knees no longer hurt. One day I started running without hooking up to the O2 tank (just forgetfulness) and thought, wow, my O2 sat seems ok...lets see how far I can go without it. I made it a full mile before the O2 sats dropped below 90%. Psyched!!! I hooked up for the rest of the workout and considered that bit of un-supplemented running true progress! Days that followed when I tried it again did not fair so well only making it to 1/4 mile before I needed O2. Every day is different, I learned. Storm and weather shifts affected my lungs, stress at work affected my lungs, but I started to see that pushing myself to run on the worst of those days ALWAYS had me feeling better after the run.

Then, the day came around I’d been training for. The clinic appointment. The day before I’d come home from work to do treatments and had a terrible coughing fit that lasted 30 minutes. It wore me out and my lungs reacted by tightening up. I thought ugg, I’m going to do terrible on my PFTs tomorrow. The next day arrived and I jumped a train and headed down to the city for my appointment. My lungs felt really tight and my expectation was that I may need prednisone to open them up again and if my FEV1 was low...I might even have to do IVs. Ugg. But, my first blow into the tube....showed 52%. Wow. Even though I wasn’t feeling particularly well, my airways were far more functional than before the running rehab. I’m optimistic my score would have been higher if not for those storms rolling in and putting me in a funk.

So, “what have you learned...from the past month Miss K?”, Coach asked. “I have good days and bad days” I said. He said “you respond well to multi tier training on many levels but it has to be very carefully measured between both not overdoing it and undergoing it”. It had become apparent that just running long, slow runs and adding more and more miles as I had done previously was not the right approach. My current program has me running a mix of intervals and progressive runs Tu, Th, Sat.  On MWF & Su I am doing weights and some cross training. I plan on working out 7 days a week, knowing I may miss one as I listen to my body and may need to take a day of rest when muscles and resolve are fatigued. Running more and running longer didn’t seem to pay off the way varied running has and please note: it’s also way less boring :-)

I’d recommend if you’re having trouble kick starting yourself to find a coach to work with. Athlete training programs used for healthy folks can also do great things for those of us with CF. A coach that can understand that there are some limitations but also not be afraid to push may be just the thing to get you started in the right direction. Exercise IS medicine!

Does CF Consume Your Life?

Do you feel like CF consumes your life?

I get asked quite a bit if it feels like CF consumes my life since I do so many treatments and make sure that I exercise daily. I of course don't feel like my life is all about CF, but I thought it would be handy to put it into numbers to see if I could make it more clear. So, for this little exercise, I'll take 2012 vs. 2008. I'm taking these two years because they seem to be the average year before and after I got serious, or better put, "re-serious" about my health.

2008 in hours
Treatments: 547
Exercise: 182
Hospital Stays: 1680
Total hours devoted to cystic fibrosis: 2409 or 28% of all available hours

2012 in hours

Treatments: 1095

Exercise: 547

Hospital Stays: 720

Total hours devoted to cystic fibrosis: 2362 or 26% of all available hours

So when you look at those numbers, it looks like a wash right? I'm still devoting basically the same number of hours per year towards "taking care of business" when it comes to CF. However, looking deep into the numbers you'll see that in 2012 I am spent double the amount of time doing treatments, triple the amount of time exercising but less than half of the time in the hospital when compared to 2008. I don't know about you, but I would MUCH rather be doing treatments and exercising vs. being in the Hole. 

There are a couple more important numbers however that need to be thrown into this equation:

2008 lung function

Highest high: 79% FVC 68% FEV1

Lowest low: 64% FVC 54% FEV1

2012 lung function

Highest high: 87% FVC 74% FEV1

Lowest low: 78% FVC 63% FEV1

**It should also be noted that

a) I started a new predicted model in 2009 that would have actually had my 2012 numbers even higher compared to my 2008 numbers and

b) Since "on average" "they" say that "lung functions declines by 2% per year", my net gain is actually even higher!

Now, CF is definitely more about lung function and those numbers don't always correlate with how I feel. I can tell you this without a doubt though, if I had to quantify how I felt in 2012 vs. how I felt in 2008, it wouldn't even be close.

In 2012 I could...

breathe better.

laugh longer.

run further.

sleep sounder.

expect a brighter future.

So if 2012 was an average year of awesomeness, 2008 wouldn't have even of registered on the same scale.

We all know that cystic fibrosis is about more than just numbers. But sometimes, numbers can help make things more clear. By looking at the numbers above, it's clear that the more I did for my health, the more my health did for me. Sure, a quarter of one's life devoted to anything seems like a lot, but I can tell you this, I've enjoyed the other 75% of my life a whole lot more in 2012 than I did back in 2008.

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!

My "Get Healthy" Checklist

Guest blog by Ashley Coleman

If you asked me who I am and what I am about, you probably wouldn’t ever hear me being defined by my Cystic Fibrosis. First and foremost, I am a devoted follower of Christ. My passion is to help people find truth. The truth sets us free. Where does freedom come from? Jesus Christ. I’m defined by few things outside of Him, but Ronnie has asked me to write about my Cystic Fibrosis journey, and so I will.

Stay with me as I make this long, long journey into a few paragraphs. At the end of February 2012, I noticed I was getting sick. I had just finished a long day at work and had a really lame workout because I was so fatigued. I bought some groceries because I knew I would need a few days of rest. Little did I know, I wouldn’t be able to carry those groceries in my house. I was so out of breath, I had to call my mom to come unload my groceries. This was a Sunday. She convinced me if I was still unable to make it up the stairs without getting out of breathe that we would visit our local ER (not my CF Clinic that is 90 minutes away). Needless to say, I didn’t improve and I found myself staying in the local hospital for a night without them knowing what to do with me. I was sent home with some oral antibiotics and not even given a PFT.

A few days later, I found myself walking the halls of my CF Clinic, Tulane, to my doctor’s office unable to even carry my purse. Once again, Mom to the rescue and after much convincing my doctor admitted me. I stayed 3 nights and was released just in time for my 25^th birthday. 20 pounds lighter, lung function at 57%, first PICC line, first CF hospitalization, first real CF exacerbation; I was scared.

57% was a number I had never seen. Not me, I am healthy. Not me, I don’t really have CF. It was time to wake up and get out of this cozy place of denial and take control of my health and well being. For two weeks, I did every single IV and breathing treatment and even walked some. There was no getting past this; it was now or never. Wake up and deal with my CF or just lay here and die, literally. It was life or death for me. I did improve to 78% but that wasn’t good enough for me.

I was born a fighter. Not literally, but figuratively. I was not going down like this.

As soon as I got my PICC line out, I was cleared for vigorous exercise again and could get super sweaty. I grabbed my Insanity DVDs and sometimes did two workouts a day, walked my dog, did every single treatment, and went to the gym. I packed on some weight, a little more fat than I wanted, but over the past 18 months my body composition has changed. I have packed on solid muscle and improved my lung function to 95%. I went from 86% to 95% in just three months. At 86% my doctor’s words were “don’t expect too much improvement from here” so just imagine his reaction when he saw 95%!

My biggest and only change is exercise. I workout 30-120 minutes per day, 6 days a week. Every day I go to the gym to workout a different muscle group. I would recommend beginners to start with a 3 day a week full-body routine, but I have been weight lifting for about 3 years now. I also do some sort of cardio. Lately, it’s been Insanity videos, swimming, and running. Now that it’s getting cooler out, I am going to be cycling more. I also walk my dog 1-2 miles a day and I look forward to that increasing as well. My diet consists of anti-inflammatory foods 5-7 days a week.

So what do I suggest to improve your lung function and quality of life?

•      Add things before you start taking away. Add the anti-inflammatory foods before taking your daily Doritos away. Eventually, you will begin to relate how you feel to what you are putting in your body. FOOD is FUEL. Add a little exercise at a time. You don’t want to overwhelm and burn yourself out.
•       Do what you can with where you are and what you have. What does this mean? If you can walk to the mailbox and back 5 times do it, then do it again the next day and do it 6 times. If you can run a mile, do it. If you cannot afford a gym membership, do your best to fit that in your budget. Join a class at the gym. The YMCA turns no one away for being unable to pay.
•       Don’t do this alone. Get friends involved. Ask for accountability, whether that be friends in person or friends on CF forums. Make a commitment and do it. If you can afford it, hire a personal trainer 2-4 times a week. I am beginning online training if you are interested, but I’m not here to plug myself. A financial investment is sometimes all you need for lasting motivation.
•       Mentally prepare yourself. Tell yourself every single day that you can and you are doing this.  Tell yourself what a good job you are doing and truly believe it.
•       Hebrews 12:11 says, “No discipline seems pleasant at the time, but in the end produces a harvest of righteousness”. I posted this scripture everywhere in my house.
•       Be kind to yourself. You will not change over night. You aren’t where you want to be, but you are on your way. Remind yourself every day of this. Love yourself well enough to take care of yourself.
•        Find a balance. Be diligent with your treatments, but also don’t beat yourself up if you miss one. It’s okay. Find that healthy balance.

Please, let me know what I can do to help. My goal is to see us as a CF community (and human race as a whole), take charge of our individual health – mind, body, and spirit. We can do this. You can do this! Believe me. Believe in you.

Bio: Ashley is 26 years old and lives in Mississippi. Ashley is trying to make a difference in this world, starting with her community while seeking health in all areas of life, freedom, and happiness for herself and others. She hopes to encourage and inspire transformation, not only those with CF, but every person she comes in contact with to be healthy and strong, but most importantly tap into God's perfect plan for their life and walk in God’s promises for all of us. She is a personal trainer and aspiring writer and blogger. She is passionate about life, loving people well, laughing, running, reading, and learning. Ashley believes every day is a journey, an adventure, a learning experience, and another opportunity to live a day full of love and life. Join her on this journey by visiting her blog: http://www.findingtruth1.blogspot.com/ She would also love to hear from you. Her email is ashleycoleman87@gmail.com. 

The Lucky Seven: Intensity Class

I know Mandi and I have mentioned this before, but we do a class at our gym called Intensity every Monday, Wednesday and Friday (and sometimes more if we feel like being mean to ourselves). The class is, well, INTENSE. It is 45 minutes of trying not to barf and doing a variety of lifts, jumps, squats, swings, ups, downs and everything in between. I absolutely love it, here's why:

1. Sweat - Whenever I sweat, it feels like I'm working hard. In this class, I'm drenched with sweat within the first 10 minutes and I drip sweat like a madman for the full 45. There are times when I can actually wring sweat from my shirt.

2. Coaching - There is a personal trainer who runs the class and comes up with a different set of moves each time. He's also there to correct improper form and to motivate you when it feels like you can't push any longer.

3. Variety - Like I said above, the class is always different. It's pretty much impossible to ever get sick of it. Only thing I could get sick of is working so hard!

4. Partner - Having Mandi there with me is awesome. Not only does she motivate me by kicking my butt every class, but she looks super hot doing it. Seriously, you should see her in that class. Rarely is the prettiest girl the most fit one also...and she's my wife! #winning

5. Gym friends - We don't have any actual friends in the class, but we have plenty of gym friends in the class. It's like we're all part of the same team when we see each other in other parts of the gym or outside of the gym in the community.

6. Benefits - I of course like the benefits of kicking my butt. I always have more energy when I work out consistently and I usually sleep better too. My lungs remain clearer longer and I have more capacity when I take deep breaths. And I can tell you one thing, that class forces me to take MANY deep breaths!

7. The End - I like the end of the class for a handful reasons: 1) It's the end of the class 2) I no longer have to work to keep my food down 3) I can catch my breath 4) I can see results 5) I feel a sense of accomplishment 6) Lunch time is coming up next! 7) Recovery

If you're not active in something that gives you a sense of accomplishment and pushes you beyond what you think you can handle, I would highly encourage you to find a class at your local gym. If you have the commitment level and motivation to push yourself that hard, then go for it! I know as for me, I would never, ever push myself as hard as I do on my own, as I do in Intensity.

Top Ten Tuesday: Things Learned Through (and Loved) About Running

It's not Monday, but I'm (Mandi) posting anyways because when I posted yesterday I realized the last post before mine was Thursday's...clearly Ronnie needs a little back up.

I have been re-inspired to run the last month. We have been doing our HIIT classes the last 3 months and I have put running on the back burner, but while on vacation I went on a couple long runs by the ocean and fell back in love (does anyone else have a love-hate relationship with running?) I also did that half marathon last week, which drove me to want to step up my running game. I decided this week to increase my miles and enjoy some time with my feet on the pavement. Here are the top ten things I have learned through running and that keep me in love:

10. Practice makes perfect. Very few people can lace up their shoes for the first time and go for a long run. It takes time. While I love things that I'm good at, I also love a challenge and knowing that I can continually get better at something.

9. My body will adapt. I once had a soccer coach tell me that, "your body is unlike any other machine, it will adapt to the stresses you put on it." This has been one of the most monumental statements in my life. I repeat it to myself during long runs. I encourage myself with it when I'm in our class and it feels like I can't do another clean and press or another burpee. I tell it to myself when I don't feel like working out. Because I know that if I push myself I get better, but that the opposite is also true. If I sit around, my body will adapt in the wrong direction. Running has showed me this without fail, every time I step up my running, I can run farther and farther.

8. My brain is more powerful than my body. There are times when my body screams to stop. To walk. To take a shortcut home. But somehow my mind can overpower what my body is telling me. I have to admit, the positive self talk in my head is something I rarely share with people, as it may be some of the most embarrassing mental dialogue of all time. But it is incredible what your body can do when your mind tells it that it will be done. I may or may not think to myself "legs engage" before a big hill. There's a chance I have "raced" the mailman down a stretch of road while trash talking him in my head, "I'm on foot and keeping up...what's up now?!" (Please erase that from your brain). I repeat over and over, "you're not in pain, you're just tired. Being tired isn't a good enough excuse to stop," probably 35 times on any given run. It works every time. #Brainsareawesome.

7. I will never be the best - and that's ok. I know I will never be the best runner on planet earth. For a type-A who's a perfectionist, not being the best at something makes me uneasy. I am driven by success. I like to be the best (yes, I said it...and I know I'm not alone, so no snickers, peanut gallery). But running is one thing I know I will never be the best at. I will never win a race. I will never be the fastest or be able to run the farthest. There's something healthy about being forced to sit in the middle of the pack - and learn to feel comfortable with being average.

6. I am intense. I am certain my husband, brother, and parents all just laughed reading that. This is no secret. I'm pretty sure even my dog knows this about me. But running has taught me just how intense I can be. I can push. I can feel like I'm about to faint and still put one foot in front of the other. In fact, Ronnie refuses to run with me, in part because of my intensity...but also in part because...

5. I can be happy even if I'm not comfortable. No one likes that person during a tough workout. I am that person. I have learned in a big way through running that my feelings don't need to be dictated by how I feel. If I'm uncomfortable, it's healthy to be joyful in the place you currently are. Running had taught me to be comfortable with discomfort. To look around at beautiful surroundings while my body aches. To thank Jesus for two legs that burn. I have tried to let this bleed into other aspects of life. In fact, I know for certain it is learning this lesson through running that allowed me to joke throughout my unmedicated birthing process - the reason I was giggling and smiling between pushes. Through running, discomfort never became an excuse for a bad attitude.

4. People bond over shared interests. Ground-breaking? No. But seriously, how cool is it that two runners passing on the street almost always smile or wave at each other.

3. The best thinking is done alone. Sometimes the world is noisy. We live in a world of constant communication and influence from others. Running allows time alone with me and my thoughts. And my best thinking can be done when I'm alone with my thoughts.

2. I'm competitive with myself. I am a competitor. I like a good competition. I really love competition with myself. I like to better myself. I like to show the me of yesterday what's up. Running has showed me this through and through. It kills me if my run today was slower or shorter than yesterday. I've learned I really can refine myself more through competition with myself verses with others. I can't always be better than others, but I can always be better than I was yesterday.

1. My body is a gift. I have been given all the tools I need to be active. I have been given a machine that will get up and move. We all have our insecurities about our bodies, but when it comes down to it, if I'm capable of getting out and running, I know I need to thank God for what he has blessed me with.

It's Good, but It's Not THAT Good

I've heard a lot of different reactions to my blog a few weeks back about the clinical trial I'm currently on which will remain nameless. One particular reaction or thought that I wanted to address goes some like this,

"Oh, that's awesome!! I can't wait until it's available because I hate CF and I hate treatments."

I guess I'll just be the one to put it out there - You can take any med currently being studied in the pipeline, and if approved, it will still not take CF away. Now this can mean different things to different people. Obviously, there will be people who get on the right "miracle" drug and it totally flips their life upside down and they start living as though CF didn't exist. I have a feeling that will be rare.

I think it's safe to say that most of us will still feel some if not all the effects of CF daily, but hopefully, less often and to a lesser degree. Many of us will still have to do treatments if we want to be the best version of ourselves.

Case in point: Today's workout was extremely hard and I was dragging booty the entire class. It was hard to catch my breath. I felt low on energy. I was doing more resting than usual and I was light-headed most of the class.

I thought for a second, "Where are you now _______ (name of study drug)?" You see, just because I've had fantastic results from the drug, or the placebo, doesn't mean that CF, or in most cases, just regular life and human reactions, go bye-bye.

I got to bed later than normal yesterday. I didn't sleep as well. I ran/walked 4 miles yesterday and I'm pretty sure my legs remembered. I ate like a 20 year-old college student this past weekend. I'm sure I could have given better effort during my treatments while in San Diego. I was out of my regular routine for 3 days. I think it just all added up.

Here's my point, no matter what drug comes out next, it won't change the fact that we're going to have to work hard. We're still going to have to make good decisions and treat our bodies with respect. The hope of course is that when we do screw up (as I am king at this) the penalty to pay maybe won't be so steep. Maybe, and Lord willing, the next generation will have no clue what "our CF" feels like. All of this of course is only speculation.

The last thing we can afford to do is wait on a med that may or may not be a "game changer". We all need to keep our nose to the grindstone and kick some CF booty each and everyday. This looks like doing our treatments, living an active lifestyle and putting our health first. If we can do that, there is no doubt that we will be the best version of ourself.

I'll leave you with this quote from the great Larry Bird which I think nicely ties up this blog with a nice ribbon. He said, "I find that the harder I work, the luckier I get."

Couldn't have said it better myself.

Increase from Exercise?

A question that I received lately that I know must be a common thought or question on the minds of others:

Ronnie, I wanted to ask what your pft range is or more specifically how much has it changed with exercise and how long did it (or has it taken) for you to see improvement?

I am currently at 30-35 percent and on 1-2L O2 24/7 I have lost about 10-15 percent over the past 7 years. In that time period the highest I was able to reach was 49.something, well almost 50%. I was hospitalized in June of 2009, my first in an 8 year period somewhere at 45%, however, can't give exact because records are stored since our move. After that hospitalization I cultured b cepacia, treated aggressively in Oct09. It took until August 2011 before cultures were clear. Anyhow, I've just started back at bicycling. I haven't participated in sports for 20 years (last softball season 1993). My main reason for having to quit was major hemoptysis. My husband and I have been in St. Augustine for a year and I truly believe that the salt-air is what keeps my lungs from episodes. 

So...after my last hospitalization in Oct. 2012,I was able to gain the 12% back I had lost in Sept., but it took 3 months. Since my last clinic, I've been riding every other day 30-40 minutes. A total of 9 weeks. So...the big test will be this coming Wed. clinic to see any change. Hoping and praying so...I want to get back to as close to 50% as possible. Lord willing with His help, I will.  Sorry so long and not sure how much you were familiar with my history, so I apologize if I had mentioned any of the details previously.  
Thanks, In Him, Laurie 

ps-if you'd rather not share I understand, just find it hard to find other Cfers that still have their original lungs! And if you did get a transplant, then I didn't catch it in your posts.

Thanks for sharing some background Laurie. (As a side note, Mandi's grammy lives in St. Augustine.)

As far as my PFT history, you can see much of it here: http://runsickboyrun.blogspot.com/2009/03/my-pft-history.html

I have not had a transplant.

It took about 18 months of working out everyday and doing 4 treatment sets a day no matter what for me to see "real" improvement. And by that I mean setting a new baseline and bringing my range closer together instead of further apart. That's continued to improve over the last 4 years.

I also have bouts of hemoptysis and it's one of those things that's always in the back of my mind. However, I'd rather "bleed out" trying to take care of myself, than slowly "commit suicide" by doing nothing (just how I think about it).

Your next PFTs may not show all of the hard work you've put in. The numbers will come, but they usually trail the effort. How are you feeling? Right now, that's what's most important. We always want to be in a position in which we can give our best. If we can't give our best, then we need to do what we need to do to get back into that position (for me, it's often a hospital stay).

Just keep your nose to the grindstone no matter the numbers. Our numbers can't dictate our effort, only we can, and should, do that.

Thanks, Ronnie for your insight and getting back to me. I am with you on not focusing on the numbers. I feel sooooo much better and I am just so grateful that I am able to get back into riding. I've had more junk, as of late, but it makes me wonder if the cycling is finally causing it to "rise". Which then I say...Good riddance!! Just to also add that the years from 2001 to 2008, I opted for "natural remedies" that kept my lungs clear or helped me through a particular illness. 

I also need to start in again with chiropractic care, it has always helped me to not be so tight from coughing and such. I've felt Cayston has helped me the most since my last hospitalization, but I am finding a slight ringing in my ears once I've done my neb this time around. Which is a bummer and something I will discuss with the Drs. this week at clinic.

I'm so happy to hear that your feeling soooooo good. That's what it's all about!! If you keep working hard, that won't change and your numbers will most likely catch up.

Quicker than expected...

One thing that's been pretty consistent in my adolescent and adult life is the ability to make up ground quickly in my exercise health, but just as quickly lose it if I table it for a while.

While being on our east coast trip, I did very minimal exercise. Yeah, I walked around quite a bit and rode bikes often, but rarely did I push myself to the level that I'm used to at home. Mandi and I managed to do one, yes one, crossfit style workout in the 10 days we were away and I put on my running shoes exactly one time. (And of course there is always a reason - I experienced my first UTI EVER on this trip within the first 3 days of us being away and it lasted about 5 days. With that said, I still didn't maximize all of the days that I wasn't peeing fire.)

My run actually felt a lot better than I expected it to considering I haven't run for distance in over 3 months. I get so much cardio from the group classes that we do, and cough up so many lungs, that running isn't really necessary. Well, on my trip I was inspired by my crazy wife, who ended up running like 25 miles in three days, to actually lace up the ol' sneakers and go for a run. Not knowing how it would feel, I tried not to let my mind wander about the impending pain that was to come upon me.

To my surprise, it really wasn't all that bad. Granted, I tried to run down hill as much as I could, and I'm sure the ocean breeze helped with my "freshness", but even my lungs passed the test much better than I was expecting. I ended up running about 3 miles, and if I didn't feel pressed for time, I think I could have eeked out another mile or so.

Anyway, I'm happy that I got something done on my vacation other than eating ice cream for dinner and sitting around on the beach, even if it was just 2 workouts. I think those two workouts set me up quite nicely for my return to our classes this week as I don't think I lost as much ground as I usually do the other times that I've taken off of exercise. Sure, the workouts have been tough, but they've been manageable.

It feels good to be back, and I'm looking forward to where I can take my exercise health from here!!

I wish I wasn't FORCED to do treatments.

I remember the good old days as if they were yesterday. Those were the days I was able to do treatments on my own schedule, whenever I wanted, and work cystic fibrosis around my life. Those were the days when my doctors recommended 2 treatment sets a day and 3 if I wasn't feeling quite up to snuff. Those were the days I was running around like crazy and it felt like I barely had enough time to get in even the 2 recommended treatment sets a day.

In those days my treatment sets consisted of albuterol, Pulmozyme and the Vest. I only did TOBI when I was in the hospital, or when my docs convinced me that I needed a month or 2 at home. If I could go back to the good old days, I would. (If only to correct the mistakes I made concerning my health)

If I took better care of myself when I was younger and actually had less responsibility and no one truly dependent on me, there is no doubt that I'd be a better version of myself today. I firmly believe that I'd be a better husband, father and friend.

It's funny, because now I have real responsibility in my life and I do truly have less time for treatments and exercise.  Back in the day I was filling up my time doing many things that didn't have any real impact on the world nor did I have a family that I was required to put first. I often think back on the “good old days” and wonder what in the heck was I doing?

[SIDE NOTE: They wanted me to do at most 90 minutes of treatments and 30 minutes of exercise a day back in the "good old days". Today, I often do 90 minutes of treatments in one sitting. It's not uncommon for me to put in 240 to 300 minutes of treatments and exercise each day.]

Back in the "good old days" doing my treatments was a choice, a choice that I wish I would have made more often. I would have been much better served to have treated my body well when I was healthier than to take my health for granted, as I did, and end up at a place that I wish I never experienced.

For those that are new to this blog I'll give a very brief summary of what really changed my CF journey:

When I was younger I was very active and I never missed any treatments. I was very active and I didn't miss any treatments because those were the rules that I had to abide by to live with my parents. When I moved out I started making my own choices with regards to treatments and exercise. I didn't always make the best choices. I saw my lung function steadily decline from 97% in 2000 (the year I moved out of my parent's house), to a baseline of 70% in 2007 (I was in the hospital for 30 days every 3 months),  to an all-time low of somewhere in the 20's in 2009 (I was too sick to blow in the ICU and blew a 31%, 10 days into a 52 day stay). I decided during that hospital stay that I could no longer exercise only “when I had the time” and that 2 treatment sets a day (which I was actually doing consistently at this point) just simply wasn't going to cut it anymore. I wanted to live.  

After leaving the hospital in March of 2009 I made a dramatic change. I started exercising and/or working out every single day. I started doing 4 treatment sets a day, no matter what. I added any additional medication that I could take. I added an inhaled antibiotic every month. I decided that if I was going to take care of myself, the way that I should, I was going to go all in. If I wanted the results I was aiming for (an FEV1 of 75% after they told me to be happy if I got it up to 55%), I knew that my health was no longer a choice, but a "have-to". 

Through hard work, dedication, and the grace of God, I was able to regain and surpass all of the lung function that I had lost in the previous 10 years. 

I sit here today writing this blog feeling better than I have in a long, long time. The cool thing is that I'm able to say on most days that I feel better than the day before. I recently had an FVC of 92% and that's something I haven't done since 2001. My FEV1 baseline is 75% now, and I haven't seen that baseline since 2003. My life is fuller and more enjoyable than at any time in those years I was making my own decisions concerning my health care.

It's not all good news though - I am FORCED to do treatments. I am forced to exercise. I am forced to put my health first.

If I don't put my health first, even for a day, I feel it. I can no longer miss a treatment here and workout there and not feel a negative impact from that decision. If I want to be at my best, I have to do all my treatments; I have to get to the gym; I have to put my health first.

Back in the “good old days” I could miss a few treatments without consequence. Back in the “good old days” I could sit on the couch for days on end and still have the lung function of most of my peers. Back in the “good old days”, health could be more than a few notches down on my priority totem pole and I'd still be able to live a full and active life.

Not today.

If I miss treatments today, my lungs feel tight, my breathing is suppressed, and my lungs are junky. If I don't move around for an extended period of time, I feel incredibly lethargic, I get very achy, and taking a full breath is nearly impossible. If I don't put my health first and at the top of my totem pole, I wouldn't be able to take Mckenna to the park every morning; I wouldn't be able to tackle life with Mandi; I wouldn't  be writing in this here blog.

When I look back on the “good old days” I realize that though they were good, they weren't great. In all honesty, they were pretty pointless.

The love I had for life back then pales in comparison to the love I have for my wife today. The fulfillment I got from the "good old days" isn't even in the same universe as the fulfillment I get from being a daddy.  I'm able to write about the "good old days" with a new purpose, a purpose that wouldn't have been discovered if I continued to live in the "good old days".

Things would be a lot different today if I would have taken better care of myself in the "good old days". If I would have put my health first when I had the choice, maybe I wouldn't be forced to put it first today. Choices in life are a great luxury to have. When I had that luxury, I made really poor choices. Today, with that luxury gone, my only choice is to live a life full of treatments and exercise if I want to be the best version of myself each and every day.

I don't have many regrets in this life, but I do wish that I would have listened when they tried to tell me that the "good old days" pale in comparison to what God had in store for me.

I can promise you this - I would have made better choices.

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!!

How Could I Choose NOT to Exercise?

One thing about exercise...it usually sucks while you're doing it.

I know I can attest to how sucky it can be. It doesn't matter if I'm running, lifting weights, biking, hiking, doing a class or an array of other activities, the "present" usually stinks. I don't know about you, but when I exercise, I experience the following:

Pain from sore muscles
Pain from stiff joints
Some type of back pain
Light headedness
Eye stings from sweat
Shortness of breath
Coughing my head off
and the list goes on...

So as you see, I don't enjoy exercise. Well, let me back up. I certainly don't enjoy exercise while I'm exercising.

I've been on the record many times about two things regarding exercise, I only do it because I love my wife and daughter and, there is NO DOUBT that it's the best thing for my health. When I'm healthier I'm a better husband and father. On the days that not a bone in my body feels like going to the gym, I figuratively, and sometimes literally, slap myself across the face and say "it's not about you!".

See, my present (both from God and in time) is what inspires me to exercise, but it's my past and future that I often think about when I'm in the trenches. When my energy is zapped and I feel like I can't push anymore and when the pain feels like it has blown past my threshold, I often think about how good I'll feel when I'm done and how terrible I feel when I'm not committed to a life of exercise. The great thing about an exercise "high" is that it often lasts all day. Sure, you're maybe a bit tired. A slight worn out feeling. But I assure you the benefits of exercise are working even when you're not. I don't know about you, but when I exercise, I experience the following:

More energy throughout the day
Better sleep at night
More mucus production through out the day
Less viscous mucus
Ability to take deeper, fuller breaths
A sense of accomplishment
Increased appetite
Better "overall" feeling
Pride in myself
Honor (keeping a promise to my wife and daughter)
Better body image
More focus on other tasks throughout the day
and the list goes on...

Now, looking at the two lists, how could I choose not to exercise?