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.

Turning Back the Clock

Great question from a reader:

I have a few questions for you, I remember reading on your blog about how you raised your PFTs. I was recently told I can't raise mine and nothing motivates me more than someone saying I can't. I obviously went through the stage every CF patients goes through and stops or halfway does their medicine and treatments and stops working out. So my question is what all did you do to raise yours? What kind of exercise? And did you eat differently?

I was told in 2009 that I should get comfortable with blowing a 50%. As with you, that motivated the heck out of me. It took two years of crazy hard work and dedication, but I was able to blow a 73%. Since then, I've remained steady and haven't had too many drastic dips. I've even been able to inch them up a little more.

For two years, this was my schedule -

Albuterol/Atrovent 4 times daily
Pulmozyme 2 times daily
7% 2 times daily
Inhaled antibiotic 2-3 times daily
Vest 4 times daily for AT LEAST 30 minutes at a time
Ran for 20 to 45 minutes 5 days a week
Took daily walks and bike rides
Lifted weights 3 to 4 times a week

I didn't really eat all that differently.

As you see though, it was a big commitment and obviously one that has paid off for me. When I blew that 73% in 2011, it was my highest number since 2003. So you can't tell me that we can't "turn back the clock"!!

Anyway, hope this helps and please let me know if you have any other questions 

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.

Disappointed in...

I had a clinic appointment yesterday as a 6 week follow-up from being in the Hole. I didn't go into it thinking my PFTs were going to be awesome, but I didn't think they would be bad either. I was right. And sometimes, I hate being right.

There were a couple reasons I thought this:

Mckenna came down with Influenza A a couple of weeks ago, and although I avoided the full on flu, I definitely developed a cough that still hasn't gone away.

I was particularly tight yesterday. I'm not sure if it was because of dust in the air or some other environmental factor, but it definitely wasn't "just CF". My cough is generally fairly dry, but yesterday it was tight and dry. Glenda could hear it in my cough and was not at all surprised by my numbers.

Those are pretty good reasons for my lower lung functions, but, and this is a big butt, I mean but, those were in no way the biggest contributing factor to my lower lung function.What those are are excuses. They just happen to feel a little better cause it happened to be out of my control. They'd be reasons if I didn't know this...


The biggest reason my lung functions were down was because, get this, because of me. 

I've been doing a really good job at getting all of my treatments and then some in each and every day. I have however only been doing an average at best job getting in all of my workouts. Now, I'm active everyday without fail because of the many walk we take with Mckenna, but that's just simply not enough for me. If I expect good lung function, I have to do more.

I can't settle for only running 2-3 times this week like I have the previous month. I can't go to the gym only 2-3 times a week and expect my FEV1 to increase. Some people out there may do great with that amount of work, but for me, it's not enough.

How do I know? Because I've put in way more work in the past and have had way better results. It's not the lung functions that I'm so much disappointed in, which by the way were 67% down from 74%, I'm disappointed in my focus and effort. 

I know I can do more. I know my priorities have been shifted over the last month or so. I know that I was more worried about running being hard than I was about the results. I was focused more on how tired I was rather than how much more energy I feel when I'm consistent with my runs. I thought about how cruddy my lungs felt before the run and not how great they feel after. I was focused on all of the wrong stuff.

When it comes down to it, it's not about me. It's not about how I feel. It's not about what I think. 

It's about them. It's about the two people on this planet that keep me going. It's about the commitment I made to my wife. It's about the commitment I'll make to my daughter when she's old enough to hold me accountable.

I know what I need to do. Now I just have to do it.

I need to remind myself every day that it's not about me, it's about what I do, and who I do it for.

The PFT Game

Lauren over at I Have CF...So What?! posted a great blog today about PFTs - what they are and how she did. We often hear that we can't recover lung function once it's gone. Oh yeah? Don't tell that to Lauren.

Here's an excerpt from her blog and I would highly encourage you to head on over there to read the rest...

It's been a while since my last blog, mostly due to the fact that I saved all of my homework over spring break for AFTER spring break, leaving me a nice week of relaxation, followed by a week of hectic homework and studying. Now that I have some free time I can finally write my blog about how incredible my PFT's were 2 weeks ago. 

First of all I'm gonna take a second to explain exactly what PFTs are because lots of my friends and family are familiar with them, but I've never really explained them in depth. The machine (which is now portable and is just hooked up to a laptop), involves a tube, a mouthpiece, and a device to measure the volume inhaled and exhaled in the lungs. I am given a pair of nose-clips to ensure I don't breathe out of my nose at all. Usually the PFT tech will ask me if I prefer being coached to which I always reply YES. For some reason, I like to have a cheerleader when doing my test. The testing starts with "easy breathing" for which little blips show up on the computer screen. I am then enthusiastically told to take a "BIG BREATH IN" and quickly blow as forcefully and quickly as I can. And then the PFT tech usually says something like "push push push push all the way out come onnnn, litttle mooooore" until I'm red in the face and I watch a little dial on the screen go all the way around like a speedometer. I then take a minute to catch my breath for another round. During the next round, the computer measures how I'm doing in comparison to the last one, so a little ticker will increase up to 100 and then turn green, meaning I beat my last result. This is very exciting to see and makes doing PFTs feel like a game, as I get more and more pleased with my results.

Click here to read what exactly PFTs measure and how Lauren "blew the box off" of her latest test!


Great job cyster!!!

Thankful Thursday: Feedback & Caramel Brulee Decaf Soy Latte

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for my mom. My mom has been in AZ since Mckenna was born and has been a HUGE help. She makes dinner, cleans my house, folds laundry, plays with Mckenna, soothes Mckenna when her gas is making her frustrated, you name it! She leaves on Saturday and man I'm sad to see her go! Luckily both her and my dad will be back mid-December for xmas :)

I'm thankful for Caramel Brulee Decaf Soy Lattes from Starbucks. It's how I start every day and it makes the world a beautiful place even after very little sleep the night before!

I'm thankful for a great one-month check-up for Mckenna. Tuesday we went for her one-month check-up and everything was great. She's growing like a champ (up 2.75 pounds and is 3 inches longer). She's not going to be a peanut much longer! 

Ronnie's List:

I'm thankful for my latest PFT results. I had clinic on Monday and my FVC was 88% and my FEV1 was 74%. When the test tech came back into my room she said "These are some of the highest PFTs that we have on record for you for a very ling time!". It's always good to hear that the hours I put into treatments and working out is paying off. My hope of course is to get these current numbers even higher, but I'll of course be happy if they stay where they are at for a while with out a decline. Either way, I wouldn't be getting worse :)

I'm so thankful that Mckenna is starting to react to our voices and giving us feedback through facial expressions. It's one of those things that as a first time parent you're never quite sure whether it's an on purpose smile of a totally coincidental smile, but for the sake of this proud poppa, we'll just go with that it was on purpose. And if I may just brag for a moment - Mckenna has such a gorgeous smile!

I'm thankful for making it through a month of Mckenna without causing extreme physical damage to her or someone around me. I'm being a little facetious there as dropping her or doing something completely wrong was never a giant fear, but as I think can be expected, it was at least a little one. So far, the only "injuries" she has had have been caused by those razor sharp blades that she calls her finger nails.

So, what are you thankful for today?

My PFT History

I get asked about my PFT numbers almost everyday. I'm constantly referring people to this post, so I figured I would highlight it today.

Click here to find out what a PFT (Pulmonary Function Test) is and what those numbers mean.

Click here to watch me do a PFT.

My Predicted Liters: FVC 5.09 FEV1 4.12

Results are percent of predicted numbers:

05/19/14: FVC 90% FEV1 75%
05/12/14: FVC 89% FEV1 75%
04/28/14: FVC 73% FEV1 57%
12/21/13: FVC 88% FEV1 75%
12/02/13: FVC 77% FEV1 63%
06/24/13: FVC 92% FEV1 75%
05/28/13: FVC 83% FEV1 73%
05/03/13: FVC 72% FEV1 57%

01/21/13: FVC 88% FEV1 75%
01/07/13: FVC 78% FEV1 65%
10/01/12: FVC 87% FEV1 74%
11/14/11: FVC 88% FEV1 74%

08/29/11: FVC 83% FEV1 69%

04/25/11: FVC 85% FEV1 73%

02/16/11: FVC 77% FEV1 60%

01/19/11: FVC 81% FEV1 63%

03/17/10: FVC 81% FEV1 69%

01/08/10: FVC 77% FEV1 62%

12/17/09: FVC 75% FEV1 60% (last day in hospital)

12/01/09: FVC ??% FEV1 41%

11/18/09: FVC 75% FEV1 53% (first day in hospital)

10/12/09: FVC 80% FEV1 67% (83/68 with old module)

9/11/09: FVC 72% FEV1 59%

8/24/09: FVC 72% FEV1 55%

8/07/09: FVC 78% FEV1 62%

7/28/09: FVC 79% FEV1 63% (post-treatment)

7/28/09: FVC 76% FEV1 60% (pre-treatment)

7/21/09: FVC 71% FEV1 59% (in hospital)

7/13/09: FVC 76% FEV1 59% (first day in hospital)

4/13/09: FVC 77% FEV 1 61% (five weeks out of hospital)
3/9/09: FVC 65% FEV1 51% (last day in hospital)
2/19/09: FVC 59% FEV1 47% (in hospital)
1/27/09: FVC 42% FEV1 31% (in hospital)

Started new predicted module in 2009

3/27/08: FVC 79% FEV1 68%

3/5/08: FVC 64% FEV1 54%

7/13/07: FVC 80% FEV1 70%

6/25/07: FVC 76% FEV1 56%

11/22/06: FVC 81% FEV1 73%

10/30/06: FVC 57% FEV1 35%

11/7/05: FVC 83% FEV1 71%

7/18/05: FVC 72% FEV1 43%

7/19/04: FVC 80% FEV1 66%

7/12/04: FVC 56% FEV1 35%

11/10/03: FVC 66% FEV1 45%

4/7/03: FVC 91% FEV1 85%

7/15/02: FVC 77% FEV1 59%

2/4/02: FVC 91% FEV1 86%

7/2/01: FVC 69% FEV1 51%

4/20/01: FVC 96% FEV1 87%

11/15/00: FVC 63% FEV1 44%

1/13/00: FVC 101% FEV1 97%

12/3/99: FVC 107% FEV1 102%

11/18/99: FVC 90% FEV1 66%

2/17/98: FVC 109% FEV1 100%

2/2/98: FVC 81% FEV1 58%

11/17/97: FVC 82% FEV1 59%

8/8/97: FVC 113% FEV1 104%

11/14/96: FVC 90% FEV1 77%

5/21/96: FVC 114% FEV1 105%

9/14/95: FVC 104% FEV1 100%

9/8/95: FVC 85% FEV1 76%

12/12/94: FVC 108% FEV1 111%

12/5/94: FVC 78% FEV1 67%

11/22/93: FVC 63% FEV1 57%

4/2/93: FVC 86% FEV1 84%

2/19/92: FVC 80% FEV1 87%

11/20/90: FVC 87% FEV1 84%

11/15/90: FVC 73% FEV1 68%

11/9/89: FVC 90% FEV1 78%

10/23/89: FVC 61% FEV1 49%

11/23/87: FVC 95% FEV1 91%

10/16/87: FVC 87% FEV1 77%

02/02/80: The Day I Was Born

Other Links:

My Medications

My Supplements

My Equipment

Thankful Thursday on Friday - PFTs & Wifey

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Ronnie's last PFTs. We may be in for a tune-up right now, but I couldn't be more thrilled with Ronnie's PFTs before he came in. An FEV1 of 69% when he's not feeling great is fantastic in my book, especially when he got out of the hospital last time at 61%. I'm just so thankful that the extra working out and eating well is paying off!! I couldn't be more thankful for how hard he works and the results we're seeing.

I'm thankful for tune-ups. Man am I SO thankful for the privilege for Ronnie to go into the hospital, have meds and get feeling better. What a huge blessing that there are IV antibiotics that work and an opportunity for improvement. I'm also thankful for a little quality tune-up time together - nothing like bunking up like it's camp, vegging out and enjoying each other's company in a different setting.

I'm thankful for freshly baked chocolate chip cookies. I made a dangerous discovery last night...around 9pm they bring out HOT, freshly baked cookies in the cafeteria. We're talking while I was standing there they brought out the cookie sheet and it was hard to get it off the sheet onto a plate it was still so gooey. Oh.my.goodness...there is nothing more yummy!!

Ronnie's List:

I'm thankful for my latest PFTs. Short story - last time I got out of the Hole I was blowing an FEV1 of 61%. About one month later I was blowing about a 72%. My last PFT showed me blowing a 69%. I just feel so blessed that 5 1/2 months after my last hospital stay that my lung function has actually improved.

I'm thankful for understanding and trusting doctors. After what I said above, many of you are probably thinking the same thing - why in the heck is he in the Hole?? I'm here because I need to be here and my doctors trust me when I say that something is going on and we need to nip it in the bud. I've had a slow decline these last couple of weeks and I didn't see that improving without the intervention of some hospital time. I know that some of us out there have to fight to get into the Hole - I'm fortunate that with a little bit of trust and open communication, I have a team that has my back (I'm still seeing my old team in clinic and they make the decisions as to whether I go in or not).

I'm thankful for an understanding wife. Hospital stays are not as awesome as being at home. Running around the hospital grounds is not as cool as running around the neighborhood. Working out at the hospital gym is not as fancy as Fitness Works. Hospital food doesn't even come close to as tasty as the food we prepare at home. Sleep in the Hole is disrupted 10 fold when compared to sleep at home. Yet my wife, she doesn't complain. She just "sucks it up" and makes due. I think in part, it's because she knows how important hospital stays are, but that wouldn't necessarily mean that she would have to have a great attitude about it all. Yet she does, and she makes due with what has been given to us. I love her.

So, what are you thankful for today?

PFT Results and Update from Clinic

So yesterday I headed down to clinic for the first time since getting out of the Hole. It's always nice to see where you stand after six or so weeks out from a tuneup and I was definitely excited to see how it would go. Now me and CF Clinic have quite a history together...and by history I mean a dysfunctional relationship. To say that I haven't been the best at going to clinic would be a gross understatement. The problem is that I've always had very consistent hospital stays and never really saw the need to check in with my doctors unless I wasn't feeling too hot. And lately I've been doing so many clinical trials that I could tell you almost week to week what my lung function is. Honestly, the biggest reason that I want to go to clinic is to see what my FEV1 is. But after much strong-arming and guilt tripping by my CF team I decided that I would bite the bullet and see them in clinic. I'm very glad that I made that decision.

We did all the regular stuff that I'm sure most of you do each and every clinic visit. My visit started off with the social worker and we just discussed some different themes I see happening in the CF community right now and what we'd like to see in the future. Fortunately, I'm not having any insurance issues or family issues at this time (although with Mandi in the house that could change at the drop of a hat...kidding babe). This was followed by a visit from the dietitian and an intern and Glenda, who is like the CF czar. Glenda makes sure that I'm always on top of my game and was one of the main reasons that I made sure I got to the clinic. She can guilt trip with the best of them :) We went over the basic stuff like how my lungs were doing if I had an increase in cough, how my appetite was and overall how I was feeling. We of course had to go over my medicine list, and you would think at some point I would write it down or have it on my phone, because I seem to always struggle to come up with all of my meds. I'm sure each clinic is a little different from place to place but I'm also sure we have common themes that are similar. But this is basically how clinic goes each and every time.

I almost forgot about the most exciting part! My appointment actually started off with a visit from Darcy who does our PFT testing. Now I felt pretty good heading into the appointment but knowing that my last FEV1 was at 61% and that I haven't been able to run for a few weeks because of my foot, I really wasn't sure what to expect. To my delight and surprise I blew in a FEV1 of 73%! According to them that was one of my best in clinic FEV1 in years. I also blew an 85% FVC which you have to go back to 2003 to match. I got to say it felt really good to see that number increased so much and just validates all of the commitment and hard work I've put in since I've gotten out of the Hole. It's been very rare for us to miss a day in the gym and if we do miss, we make sure to get a walk or a bike ride in. We've also been eating much better and although that may have no effect on the lungs, I can definitely tell and how it affects me overall.

Now the key is to not get comfortable. I can be some fat cat who thinks he has it made just because I have a really good PFT or I can use this as even more motivation. If anything what this shows me is that if I work even harder I may be able to raise those numbers up even more. I haven't been perfect since I got out of the hospital, but I strive to be perfect in taking care of myself each and every day. After the test today I thought to myself what would've happened if I was 100% compliant on both treatments and exercise this entire time? Of course I'll never know the answer, but moving forward I have another chance on trying to achieve perfection. Getting comfortable has always been one of my big battles especially during these times that I feel great. I have to remember that CF never takes a day off and I can't afford to either.

Pulmonary Function Test (PFT) in Hospital

I took my PFTs yesterday for the first time while in-house. The last time I took them was right before I came in and I blew a 75/60 or so. Well, they could have gone better, but they could have also gone worse. They pretty much went neither. I blew a 71/60. I wasn't expecting much better so I'm not disappointed. With the coughing up of blood a couple of days ago and my inability to get my exercise on point, the fact that my lungs are a bit tight is not surprising to me. You can hear the tightness in my cough even (if you're so inclined to watch the video below). It's hard for me to take a big, deep breath in and it's tough to really blast it out- hence the lower than normal numbers. No worries around here though! This only motivates me to get out of this bed, put my running shoes on and get to work.

It's not the numbers of the tests that matter, it's how I respond to the numbers of that test.

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.

Inspiring Story from "Jail"

A recent blog by a fellow cyster that I found to be very inspiring:

Day #11 In "Jail"

by Marina Finnell

So I've been in the hospital for 11 days now and I am finally getting to go home tomorrow! Well, that's the plan anyways, let's hope that's still the case when tomorrow comes! Oddly enough though, this hospital stay seems like it has gone by quicker than most others do. I am usually in the hospital (or as I like to sometimes refer to it, as "jail" haha) for at least 2 full weeks, but this time, i have been working my butt off like a crazy lady with all of my treatments and exercise and meds that my PFT's have gone through the roof!!!! =] I am sooo excited to be able to make this stay a short one and to get on to enjoying my last summer before I start college in August!!!

So when I was admitted to "jail" (hehe) 11 days ago, my PFT's were not so hot, they were below 50% :/ I realize that there are plenty more CFer's out there that are living their daily lives even lower than that, but everyone's story and their CF is different. So I don't want to sound "braggish" or annoying to other people reading this, which is why people write their Own blogs and what not, because it is about them. haha. Anyways, a 50% PFT is really bad for me, it's the lowest I have ever been and if you think about it, it's like only being able to breath with one lung. Blah. The Docs weren't too happy with this number oddly enough haha. So after getting yet another Reality check this year (as I am growing up and moving on in life, I have been getting a lot of reality checks with my CF this last year haha) I have been working my little heart out in here and doing my treatments and meds etc. like a crazy person and I realized, they seriously ALL make a huge difference! After just 4 days of constant treatments, IV meds, and determination, I got my PFT's up from 50% to 67% ! That's huge for me! =]

The next day, I had a bronchoscopy and my first sinus surgery done! Wow, did those two make a difference!!! I feel AWESOME! They sure did clean me out! :) After 9 days of being in the hospital and 4 days after my procedures, my PFT's were up from 50%, to 67%, to now 76% ! :) Whooo! 76% is higher than my numbers have been in at least 6 or 7 years!!! My baseline is usually only around 65% too so I've definitely made huge progress!

Are you ready for the BEST news of all?!?!?! Today, my 11th day in here, my PFT's are up to 79%!!!! So close to an amazing 80, but I will most definitely accept a 79% and my Docs will gladly take them as well! But the hard work and dedication to my CF and my body does not stop here! As I am preparing to go off to college here soon in a ocuple months, this last year and these last couple weeks alone, have been great experiences for me! I now have been able to see for myself what I am truly capable of doing on my own! =]

It's all just so exciting! I had to share this first experience of becoming an adult and dealing with CF all on my own without mommy dictating everything I do haha! Well, RT just walked in and it's time for my last evening treatment of this hospital stay!!! =] Whoo! Approximately 12 more hours and I'm FREE again!!! :)

http://www.cysticlife.org/BlogProfile.php?id=1443

Isn't that sooooo cool?!??!?!? It just shows that if we set our mind to it and put in the work sometimes the impossible is possible. Great job cyster and I can't wait to read about even higher PFT's next time :)

Keep This Train Rolling!!!!!

It's good to be free!! First, I'd just like to thank everyone for all of your warm wishes and prayers while I was in the hospital. Second, well, I guess now that I'm typing, there is no second, so I would just like to thank all of you again!!

I was released from the Hole Monday afternoon and let me tell you, it feels good to be out. I don't know what it was exactly, but this last stay was a tough one. I'm the type of guy that NEVER minds being in the hospital. I can always see the light at the end of the tunnel and just knowing that I'll feel better at the end of my stay is always good enough for me. I think what happened this time was I just had way too much exciting stuff happening on the outside. I'm getting married this month. Mandi had her shower. We bought a house. We started painting the house. And by "we", of course I mean Mandi. I was reduced to being on speakerphone the first time she laid foot inside of our house as the new and official owners. I had to live through recall and pictures.

Now, let me be clear- it was a VERY good thing that I was in and got a tune-up. I thought of it this way. I made the decision that it would be better to be in the Hole a couple of weeks before we got married, then to be in a month shortly after we tied the knot. I could feel myself going down that slippery slope of sickness and knew that I had to go in to stop the slide. I am so blessed that things worked out, I responded to treatment and things only took two weeks. I don't know how much longer I could have stayed this time. My normal stay is 30 days, and thank you God, it did not take that long.

That leads me to my last little tidbit...if you didn't already read somewhere: My numbers are UP!!! I blew a 89%/73%. That 89% is my highest since a 91% in 2003. The 73% isn't the highest I've had, but it's only 2 points off from being so! It's such a good feeling to see all of the hard work and dedication paying off. I bust my butt everyday to take care of myself and push the envelope of treatments and exercise. It of course makes that commitment much easier when I see it yielding fruit. Now it's just a matter of keeping this train rolling!!!

PFT Update and Blabbering

Memories of Gma and High FEV1!!

Wow, I have so much to be thankful for on this Thankful Thursday post. Here's what it at the top of my list:

-Seeing my grandma reach her 80th year!! Let's face it, that's OLD. I've said many times that thinking about living that long actually makes me tired :), but now that I'll be married to a gal that would literally kill me if I died, I better change my plans! For my gma's 80th birthday, many of us sent her letters detailing fond memories that we have of her. I had two that came immediately to mind: playing baseball in her cul-de-sac and blowing on a noise maker with her. As far as baseball goes, I remember being amazed as a little kid that my grandma could actually hit the ball, but what blew my mind was when she ran the bases! She was ALWAYS down for a game outside and always willing to entertain all 13 of us grandchildren. My second memory is probably the most special cause it is one only shared between my gma and I. The dreaded noise maker. She had this little plastic thingy that when blown into would make a really crazy noise that always made her laugh. It didn't have the same effect on me however as it made me cough, but that was always followed by laughing in response to my gma's laugh which would in turn make me cough again. Follow that? Anybody notice what she was really doing? That's right, I was doing a treatment without ever realizing it! I would do it literally EVERY TIME I went to my gma's house which was often. She's sneaky, but she sure does love me :)

-I'm also thankful for all of the support shown to me the last couple of days on this blog and facebook. I asked for some accountability partners and that's exactly what I got! And I'm proud to report that although I was traveling all day and was very tired when I got home, I still managed to get a run in. I'm sure that I would not have done it if it had not been for all of the encouraging messages and comments. I can't thank all of you enough for that! Oh and on a separate but related note, I blew my highest FEV1 (69%) since July of 2007!! WOOT WOOT!!

Wordy Wednesday by Mandi

Mandi gave me a nice little surprise by filling in for me today! I'm always trying to get her to do a video blog, so I'm glad she finally stepped it up! I'd say for her first time around the block she did great!!!

So, how would you rate Mandi's first video post?

10= Ronnie should never again do video posts.

5= We'd like to see more of Mandi on video but keep Ronnie.

1= Seriously Mandi, please don't touch the camera again.

Better than a Sharp Stick in the Eye!!!!

So I did my PFTs again yesterday and didn't exactly get the result I was looking for. They went down again as they did last week. I have now dropped 12% of lung function while I've been in the Hole. No problem though, this just gives me the opportunity to work my butt off and get these numbers back up! Check out the video below:

Let's hear em! What suggestions do you guys have for me? If you were playing doctor, what would you do???

I'm Sick and it's My Fault

So I head in for some PFTs today (just as a formality) so I can get myself a bed in The Hole ASAP. I've definitely taken a hit this last month with my overall health. If you remember my post from last week, my PFTs were also down about 10% from last month and I'm having hemoptysis. I knew that I was going to have to get in sooner rather than later, but I was hoping to hold off until after Thanksgiving. It's gotten to the point though that I know damage is being done and now I just have to nip it in the bud. The biggest problem has been my lack of energy. And with me, a lack of energy can be a killer...well, let's hope it's not that bad :)

Everything kind of slowly goes downhill when I start missing my runs and workouts. With all of the traveling I've been doing lately, my schedule has been all over the place. I mean, I brought my running shoes to Dallas with me, but did I use them? NOPE. And that's completely on me. I can't blame lack of time. I can't blame weather. I can't blame how I feel. There's nothing to blame but the guy I see in the mirror everyday. Cause here's the deal: I've managed to run when I had even less time, there was worse weather AND I felt even crappier. So there is only one thing left to blame: Ronnie. I've made choices over this last month that have allowed my lung function to slip. I could have pushed harder. I could have scaled back on work. I could have went to bed earlier. There's a million things I could have done differently, but I chose a different way.

Now I have another choice to make: I can sit here and sulk and wonder how things would be different without CF or I can learn from how I'm feeling right now and realize that I don't like it and I CAN control the outcome next time. I'll pick option number two. If I sit around and wonder why, I'll be wondering the same things on my death bed. I don't see the point in asking a question that really doesn't have an answer...and to be frank, if it did have an answer, I wouldn't care what it is. All of this "feeling sick" crap is what actually makes life even more interesting for me. With everyday that passes, I'm learning a little more about myself and my opponent. The fact that I get to face a "challenge" everyday is something that I thrive on. It drives me like you would never believe to prove all of the statistics, numbers and nay sayers wrong. If I lose this challenge, I can guarantee you it won't be Cystic Fibrosis' fault...it will be mine.

Down, but NEVER Out!

So as many of you know already, I took my PFTs again yesterday. Would you like the good news or the "bad" news? I'll go ahead and give you the "bad" news first. My PFTs were down. They went from a FVC of 83% and an FEV1 of 68% to 73% and 60% respectively. Now, here's why I say "bad" news. I of course never ever like it when my numbers go down, but this can actually be explained.

I just ended a cycle of TOBI. Want to guess what my PFT numbers were after my last cycle? If you guessed almost identical to what they are now, you'd be correct. When I blew my PFTs out of the water last month, I was on my off month of TOBI. So what does this mean? Well, one of two things: it's either pure coincidence or TOBI bothers my lungs while it's in there killing the bugs. I'm going to have to go with what's behind door number two Pat! I always feel a little "off" during my TOBI months. I'm usually achy, have hot flashes and generally feel more tired. It also probably didn't help my numbers that I was traveling so much this month and I hacked up some blood last week. So, that's the "bad" news.

Good news you ask? Like one of my Facebook friends said, this gives me the opportunity to "recalibrate and recalculate". I love that by the way Kelly! That's the first thing I thought when I blew those numbers (not in those exact words of course, those are yours). I was thinking, alright Ronnie, let's figure out what you did or didn't do this month that you did or didn't do the month before. Where do I start? Like I said, I was traveling a lot this month. Traveling means less consistent exercise, less consistent treatments and less consistent sleep. Well I'd say that's enough to send my lung function down 10% right there! Now it's up to me to make a new battle plan for this month and stick to it. No excuses!

I never take these "bumps in the road" lying down. If CF raises me some bad PFTs, I'll re-raise him with more exercise. If CF raises me with tiredness, I'll re-raise him all-in with increased treatments (Sorry for the poker analogies). Point is, I'm willing to do whatever I have to do to maintain and increase my lung function. I know that the investments I make now, will pay off in the future. For me this month, it may mean a hospital stay. If we're going to be honest, my doctor wanted me to get a bed in The Hole tonight. He's concerned with my drop in lung function + hemoptysis + other symptoms. Unfortunately, I can't go in tonight. I'm traveling to Dallas on Friday to be part of the CF Concert Series. If I get more sick by making that choice and pushing off a hospital stay, then it's on me. I'll have nobody to blame, including Mr. Cystic Fibrosis, but me. When it comes down to it, life is choices, and I am alone responsible for every one that I make...

...but yeah Dr. Martinez, I'll take that bed next week!

The First Ever Post on RSR

**By the way, today is Mandi's birthday, so I sure wouldn't mind if you gave her some love in the comment section**

Some of you may remember this post from March 12th, 2009, but many of you will be reading it for the first time. I thought it could be cool to take a quick trip down memory lane. If you're a newer reader of this blog, I encourage you to take the time to read some of these older posts. It's been an amazing journey thus far, together we've raised my lung function from 65/51 (FVC/FEV1) to 80/67 and I can't thank you guys enough for that. Sure, the structure of the blog has changed over the past couple of months, but the message is the same: We DO have more control over our lung function than we often give ourselves credit for!

The First Cut is the Deepest

6am: Alarm goes off and I'm already thinking that this was a bad idea. I slept ok but every time I woke up during the night, I stayed awake for at least 5 minutes listening to the "submarine" that provides me oxygen. I hope I get use to this concentrator ASAP or the docs are going to have to come up with a new plan of action. Anyway, I role out of bed and I have a headache, I'm coughing up a bunch of mucus, and my right lung is killing me. Do I just scrap this whole thing and crawl back into bed? I thought about it. I roll downstairs to have a little bit of tylenol coffee to get rid of my headache and lace up my shoes. I'm ready for this. I start down the street and already I'm coughing my brains out. There is a trail of mucus following me marking every step that I have taken. I'm winded. I'm tired. I'm trying not to throw up. I am however dry heaving. I wasn't sure how far I was going to be able to go, but I decided to push through all the crap and just do it (that should be a slogan).Anyway, I'm in good spirits and I'm ready for this challenge. I just hope that walking my dog first thing in the morning gets easier.

Total Distance: 1.6 miles

9:30am: I was on my way to the gym when I remembered that I needed an oil change. So I went to the Honda dealership to drop off my car and from there do a run/WALK. I put walk in CAPS because I do mostly that, walk. I'm guessing that the furthest distance that I covered in a straight shot running was 100 yards. After about 1.5 miles of the run/walk my legs started to feel really dead and my back started to hurt. So, because it is the first day, I peeled back a little and walked the rest of the way back to the dealership. I will say though, my lungs still hurt pretty bad, but they felt better than this morning. I'm moving the right direction!

Total Distance: 2.3 miles

12:00pm: So I finally made it to the gym to prove to my mind that my body is weak. Let me tell you, I proved a good point. I was lifting lighter weight than when I was in 7th grade. I worked out my chest and back with various weight exercises. Everybody in the gym probably thought I was super cold because I was shaking so much trying to do the bench press. I've got a lot of work to do. Current Weight: 195 lbs.

6:00pm: Mandi and I decided to give it a go at tennis tonight. We arrived at the courts with rackets and tennis balls in hand, but there was a problem, no courts available. We made the best of it and hit balls back and forth on the basketball court. Luckily, Mandi's aim isn't the best, so I got a pretty good workout just chasing the balls around.I can tell you one thing: I cannot wait to get to bed.

Total Distance Run/Walk: 3.9 miles

I hope that walk down memory lane was as good for you as it was for me! This blog may have started as something to hold me accountable on my journey of taking my lungs back, but it became something more than that these last couple of months. I have met so many awesome people through this blog that I probably would have never met had this not started. I really think community is key when talking about Cystic Fibrosis and I'm so glad that we have a place to share our "playbooks".