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!

What a difference a year makes?

It's been almost a year since I've updated my PFT History on this blog. I have a good reason for not updating it however...I forgot to :) Well, I went to update it tonight armed with new numbers today from clinic, and was actually surprised at what I found. Surprised for a couple of reasons actually. First, as I already stated, I was surprised that it had almost been a year since I updated my numbers, and second, I was surprised to see what they were almost a year ago. To be exact, the last time I updated my PFTs on this blog was November 14th, 2011. So what were my numbers almost a year ago today? Well, I had an FVC of 88 percent and an FEV1 of 74 percent.

For those of you who have no clue what those numbers mean, I'd like to refer you to this blog for a quick course. If you'd like to see an older video of me doing a Pulmonary Function Test, click here. And if you skipped past those last two links but still what a super quick refresher here it is...

When you hear about someones PFT results you will usually hear two numbers FVC/FEV1. They are both given in percents like 88%/74%. The FVC measures how many liters of air I can take into my lung. When expressed in a percent, it's based on how many liters I should be able to take into my lungs given my sex, age, height and race. If I should take in 4 liters of air but I instead take in 3 liters, my FVC expressed in a percent would be 75% because 3 is 75% of 4. An FEV1measures how many liters of air I can blow out of my lung in the first second of exhalation. When expressed in a percent, it's based on how many liters I should be able to blow out of my lungs in the first second given my sex, age, height and race. If I should blow out 3 liters of air in the first second, but I instead blow out 2 liters, my FEV1 expressed in a percent would be 66% because 2 is 66% of 3. Make sense now? No? We're still moving on :)

I was excited for my clinic day because I was going to be able to do some PFTs for the first time since my hospital admission in late July. Since being discharged in mid-August, I've been working my booty off in the gym. I'm not sure what I left the hospital at, but I believe it was somewhere around 80%/74%.  I wasn't sure what I was expecting to blow, but for me, I've always been of the opinion that anything but down is good. I of course am always shooting for higher numbers, but I'll never be greedy if the "only" stay the same.

All three of my blows were consistent and they all felt good. My final numbers were 87% over 74%. I'd be lying if I said I wasn't even a smidgen disappointed, but that quickly dissipated when I reminded myself how great I feel. There are times when our numbers don't exactly reflect how we feel. That can be both to the positive and negative side. Sometimes our numbers are low, but we feel great and sometimes our numbers are high but we feel awful. Well today, my numbers were baseline (my average PFT that they expect) and I feel great! I'd say there's nothing to complain about!!

I was then even more delighted with my results from today when I went to go enter them in my PFT History. About one year ago today I had virtually identical numbers. But I thought are numbers were supposed to go down every year when we got to be old farts like me? I've told you that not everything you read or your doctor says is true right?

So what do I do now? I shoot for even higher numbers next time. I work even harder in the gym. I focus even more during my treatments. I make it a goal that in October 2013, while I'm celebrating my wife's 27th birthday and my daughters 2nd, my numbers are the same or higher.

All I can do is wake up every single day and decide that I will do everything possible to put myself in the best position to succeed.

If I can do that, as Jerry Cahill would say, I cannot fail.

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.