CF in the News

FDA Approves Drug for C. Diff Symptoms:

http://ow.ly/55k7Z

Cystic fibrosis causing bacteria may harbour deadly MRSA super bug cure: 

http://www.dailyindia.com/show/442210.php

Cystic fibrosis bacteria could help fight back against antibiotic resistance: 

http://www.physorg.com/news/2011-05-cystic-fibrosis-bacteria-antibiotic-resistance.html

Mauli Ola Foundation Concludes Successful National Cystic Fibrosis Month with Three Events:

http://ow.ly/55k9Y

Adults with cystic fibrosis benefit from specialized St. Mary’s program:

http://www.therecord.com/news/local/article/537629--adults-with-cystic-fibrosis-benefit-from-specialized-st-mary-s-program

Regenocyte Successfully Treats Cystic Fibrosis Using Patients’ Own Adult Stem Cells:

http://gamutnews.com/20110525/9567/regenocyte-successfully-treats%C2%A0cystic-fibrosis-using-patients-own-adult-stem-cells.html

McMaster research helping battle cystic fibrosis:

http://www.thespec.com/opinion/columns/article/537399--mcmaster-research-helping-battle-cystic-fibrosis

Genes Tied to Severity of Cystic Fibrosis Identified:

http://ow.ly/55kbR

So Why Don't You Exercise?

E-mail: Hey Ronnie-I am pretty new here...but have been following your blog for the past couple of weeks. I am sort of in a similar situation. For as long as I can remember I have pretty much had one IV clean out per year which would last 2-3 weeks and leave me feeling great. However, this past fall I was on IV treatment for a full 10 weeks...it was hell and even after that was all over my PFT's were still at an all time low. About a month ago I went to see my doc and my FEV1 was at 43% and he is trying to convince me to go on IV again. So basically all of this has scared the crap out of me. Since then I have been working extra hard to try and improve my PFTs without IV meds. I have always been really compliant, but I've added even more neb treatments & chest pt sessions to my routine. My efforts have shown some improvement in my FEV1...now up to 48%...but still not enough to make me happy.

The one thing that I can't seem to get on track with is exercising, and I think this could really make a difference. Some of the problem is because I am lazy...but most of it is because I feel like I have no time! As it is I feel like I have very few hours a day where I am not doing something CF related. I try not to let CF consume my life, but recently that's how I feel. Sometimes it seems like I spend my entire day doing treatments just to go to bed and wake up and do it all over again the next day. So I am sort of having a quality of life issue. I was just wondering how you manage to get in so much exercise time plus regular treatments...and still feel like you have somewhat of a life...haha?!? I should mention that I am not working right now...so I don't have that to worry about...but I do need a lot of sleep (to feel totally rested I need at least 9 hours a night.)

Anyway, sorry to dump that all on you, but I think what you are doing is great and very inspirational! That is a great improvement in your PFTs...I am very happy for you!! Anytime I am read your blog I keep telling myself that I just need to bite the bullet and do it! But easier said than done...{Name kept private}

Response: Hey {Name kept private}-Thanks for the message and trusting me to give you some advice. First, here are some harsh realities:

1) Hardly anybody WANTS to work it. It is only a select few people that actually have the desire to work out everyday.

2) You NEED the benefits of working out more than most people

3) Most people CLAIM to not have the time to work out

4) Without a job, you have MORE time than most people to workout

Now that we have those out of the way, let's talk about some solutions. First, you need to be convinced that working out is going to better your quality of life AND lengthen it. So while you, like the other 99% of the population, don't feel like working out, you have to realize that it is more important to you than that 99%. The key is just to start small and grow from there. Even if you can commit just 30 minutes a day to start, that's all it would take.I know however that you can commit much more, so let's look at how much time you actually have in a day. First, you get your 9 hours of sleep from 10pm-7am. Now your left with 15 hours. Take out 4 hours for treatments, leaving you with 11 hours. Now subtract 2 hours for meal prep and eating, leaving you with 9 hours. If you start working out 30 minutes a day, you'll be left with 8 and a half hours. That's 8 1/2 hours to do anything you want! Most people in the "real world" probably only have 2 hours at the most to do anything that they would want. You and I are actually very blessed with the amount of time that we have for our own "stuff". Think about people who work a 9-5 and then come home and have to devote their "free time" to raising a family AND working out.

So I hope you see by the last paragraph that you actually have PLENTY of time per day. Now, with the laziness. Sometimes this is the toughest thing to overcome. Here's some tips: First, commit to a small amount of time per day until you are completely comfortable and committed to that time. Once you are in a good routine, you can bump it up by 15 minute increments. Second, is there anybody that you can walk/run/workout with? It of course makes things easier if you have a motivational and accountability partner. That way the days that you are feeling "lazy" there is someone around to kick your butt into gear. I also believe that it is best, and most important, to workout on the days that you have no desire to. Really concentrate on pushing yourself on those days. When you're finished, it is more rewarding, and think how easy it will be to go on the days that you are motivated.

Lastly, I am a huge advocate for hospital stays. They really help me and I know that for ME, it is what I need. I've never done well with home IV's and the hospital forces me to rest. There are some countries around the world that make their CFers go into the hospital 3 times a year, and they usually have better longevity rates. I usually go in whether I'm feeling sick or not. Because you have to remember, once your lung scars or dies off, that's it, it's gone and it's not coming back. By staying one step ahead I think you put yourself in a better position to avoid that.I hope this helps. Sorry for the long response, I just wanted to cover everything. If I missed something or didn't answer one of your questions, please, let me know. Also, I wanted your permission to put your questions and my response on my blog www.RunSickboyRun.com. I won't use your name and I think it could be beneficial for others to see.

Please keep me updated with your PROGRESS cause I KNOW it's coming.

Do Life,
Ronnie

Thankful Thursday - Horrible Acne & American Idol

Know what time it is? 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. as I mentioned, I no longer have the "linkytools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for our circumstances. I was sitting with friends and we were discussing various topics such as finances, housing, relationships, etc. And I just sat there thinking, "Man, we are so incredibly blessed." There are so many circumstances, struggles and situations that others have to deal with in their lives, and it often feels like we have been dealt a very easy hand. I am so grateful for all that the Lord has blessed us with. Sure, we have things in our lives that some may consider "struggles," but when I hear what others have to deal with, I find myself thanking my God for the minor issues we have!

I am thankful for my hubby and his contributions around the house. Ronnie does far more around our house in the way of chores than I do, and I am so thankful that he does all that he does. He's constantly washing dishes, picking up, gardening, you name it! Last night, I had to go to my office for some meetings and then I had small group shortly after getting home. I figured I wouldn't eat a real dinner because there simply wasn't time. But when I walked in the door, I smelled food. Ronnie had made a delicious soup, and had it ready for me when I got home. I don't know what I'd do without him kicking in 75% of the work around here!

I'm thankful for face wash. My face is finally starting to clear up (and by clear up I mean it's now just horrible acne instead of horrifically hideous acne). I went to a dermatologist and got some face wash that is seeming to help (after 4 weeks of using it). I am so thankful that at least now it's not so angry and inflamed that it itches. I'd rather it just look terrible than FEEL terrible. Small victories are all I'm hoping for at this point, if you can't tell! Hopefully it continues to clear up and I only look slightly like a monster by the time this baby makes its appearance.

I'm thankful for a great year of marriage - and many, many, many more to come!!

Ronnie's List:

I'm thankful that I could just watch Scotty win American Idol. He's been one of my favorites since day one and I grew to like him more as the show continued. It's just so nice to see a kid that humble with such an amazing voice and good looks. What really won me over was when he cried during his whole hometown visit. I was really pulling for him to win and I'm just glad he pulled it out. The fact that he first gave thanks to God for his win was just icing on the cake.

I'm thankful that we got to spend some time with Mandi's college friend and her husband. Mandi's friend, Jenna, happened to be out in Phoenix for a conference and as a result, we've been able to spend some time with her and her husband Brandon. They are both "salt of the earth" type of people and I have a feeling that we'd all hang out a whole bunch if they didn't live in Tennessee. Brandon is currently a football coach so we've had a whole lot to talk about (for those that don't know, I was also a football coach in a past life).

I'm thankful for Emi. Emi is my new little 2nd cousin that my 1st cousins will officially adopt tomorrow. She is such a cutie and has been an absolute blessing to not only Tim and Gina but to the whole extended family. We are a family full of love, so any new member that we can love up on is welcomed with opened arms. Can't wait to watch you grow into a beautiful young woman Emi!!!

So, what are you thankful for today?

Respiratory Therapist - What I Expect

Today I had the opportunity to sit in on an advisory board meeting for the respiratory care practice of Carrington college. The basic goal of this meeting was to make sure that the students Carrington college was putting into the field were as prepared as they could possibly be to perform their job at a high level. There were representatives from the college as well as various hospitals and medical institutions around the Phoenix area. I was invited to sit in as a “public member” and speak to those in attendance about my involvement in the CF community. There wasn't much at this meeting I could actually contribute to other than that, but it was still interesting to be a part of the process.

Being part of this meeting did get me thinking about my experience with respiratory therapists over the years. I then started to think about my answers to various questions that they would ask somebody like me (Believe me, I had to bite my tongue not to just speak out of turn at the meeting, but I wanted to make sure I'd be invited back). As a result of my daydreaming I figured I would share with you guys three of the basic things I expect out of respiratory therapists (RT).

Effort. I can say without a doubt that the number one thing I expect out of every single RT is effort. It literally makes my skin crawl when someone walks into my room and gives me a hand pound comparable to a corpse. Now, I admittedly take a very hard pound and not every one that comes into my room has the physical strength to comply, but I'm not talking about them. I'm talking about the RT's who are very physically able to perform a good, strong hand pound, yet choose to give a piss poor effort. And if you don't have the physical strength, just come in giving it your best. It doesn't matter how much you weigh or how strong you are, everyone can give 100%.

Attitude. And more explicitly- a good, working attitude. I understand that you have other stuff going in your life besides work. I totally get that you and your husband may be having issues. I can sympathize with you that some of your work takes extreme physical labor. I know that some days you're just simply dog-tired. I know that for some of you this is "just a job". So how do I put this nicely? Ummmmmm, you're not a volunteer. Unlike me, you're actually getting paid to come into my room and perform a task. Unlike me, you're not forced to be there because you feel like crap. And unlike me, you're able to go home to your wife. I understand that you're human. I understand that you can't always “be on". But please understand that I tell you the truth when I say "I'd much rather not be here then you".

Don't stink. You wouldn't even think that RT's coming into my room smelling like an ashtray would be an issue, but believe it or not, it is. Just as I wouldn't go into someone's house smelling like alcohol who was suffering from cirrhosis of the liver, you shouldn't come into my room smelling like smoke. It's downright disrespectful. And yes, I would rather you come in smelling like body odor then smelling like you just took a shower in the latest fragrance by Britney Spears. What can I say, my lungs are sensitive (and even more so when I'm in need of a tune-up). So although I respect your right to smell how you want to smell, I respect my right to breathe even more.

So that's it, a short and sweet list of what I expect out of respiratory therapists. So what do you think guys? I'd love to get your thoughts and opinions in the comments section below.

Anniversary Presents: Mission Accomplished

I was finally able to give Mandi her anniversary presents tonight! I was waiting for one of them to come in the mail and the special day falling on a Sunday didn't help in that department. But, her reaction was all I needed to know that it was worth the wait. For those of you who don't know, the first year anniversary is also known as the "paper" anniversary. Mandi and I had been racking our brains to come up with some creative gifts to exchange for weeks now and I was so glad that the moment finally arrived.

Her first gift was a stroke of luck that I happened upon while cleaning out our "catch-all" closet a couple weeks ago. You know, that closet that gets all of the stuff that doesn't have anywhere else to go. Well, we had been putting stuff in our catch-all closet since May 22nd of last year and it finally got to the point to where I couldn't look at it anymore. While I was cleaning it out, I stumbled upon Mandi's college diploma. One thing you must know is that one of the first things that drew me to Mandi, and ultimately made me fall in love with her, was her drive, focus and the fact that she's super smart. To me, her college diploma is very representative of that. The fact that it also says Summa Cum Laude is just icing on the cake (I had to brag on her a bit). So I bought a decent looking frame, threw her diploma in it and told her how much I loved her brains. That my friends was gift number one.

Gift number two was a little more difficult to put together. I also need to give you a little bit of a back story. When Mandi and I were pretty fresh in our relationship (about 6 months into it), we took a cross-country road trip. On this road trip we listened to a lot of music. One of the artist we listened to a ton was Corey Crowder (listen to his music here and visit his site here). Our favorite song during that road trip was a son that he sings called "Starting Forever". We actually commented to each other that that song would be a perfect first dance song for a newly married couple. Well, as fate, luck, love and determination would have it - we ended up being that couple. We even convinced Corey and his wife Laney to attend our wedding AND to sing that song live as our first dance song. And it's not like they could just roll out of bed and do it - they had to fly across the country to be at our wedding and with our eternal gratitude actually made it work! Not only does Corey and Laney hold a special place in our heart, but the song "Starting Forever" does as well.

I reached out to Corey and Laney a couple of weeks ago to help me out with my second gift. I asked if Corey could scribble down the lyrics to our first dance song on a piece of paper that I could frame in our house. Being the awesome guy that he is, he obliged and today it arrived in the mail. Corey took the time to hand write the lyrics out and also included a special message to both Mandi and I. Like I told Laney, just the fact that I thought of this gift would be what would blow Mandi away. I'm not the most thoughtful or romantic guy on the block, but after hours upon hours this is what I came up with for my "paper" gift. Let me just say - it's as if I gave Mandi solid gold. When she opened it up and realized what it was, tears were streaming down her face and she could barely get out the words to tell me how special it was. Mission accomplished.

Thank you again to Corey, Laney and my one good idea a year :)

**Oh yeah, and as a bonus, I bought a powerball ticket for our anniversary and won 103 bucks!!

One Year Anniversary Recap

As some may have noticed, I'm not posting this blog until a little later on Monday - which is just an indication of how fun and busy our anniversary was. It was a great way to top off an even greater year together. I couldn't be more thankful for the man God provided as my life mate and yesterday was just a great celebration of the love we share!

The morning started with breakfast-in-bed made by me. Unfortunately it wasn't a surprise because Saturday night I told Ronnie I was going to get up and run in the morning so he could sleep in (which isn't unusual for us) and he replied, "wake me up, I'll go with you"...."Uhhhh. You have to sleep in." I replied. So he knew breakfast-in-bed was coming, but it was delicious none the less. He had blueberry pancakes, scrambled eggs and a cup of coffee. After breakfast we relaxed on the couch and watched a little TV. Then we headed to the 10:30 service at church.

After church, we headed out for Ronnie's planned portion of the day: exploring. We drove out towards the mountains and a lake called Canyon Lake. Here are a few photos of the excursion:

Driving on the open road

Stopped at a look-out to check out the view

Had a little snack siting on the tailgate

Explored some more

Oh yeah...peanut came too

After our 4 hour excursion, we headed home for Ronnie to sneak in a treatment and to shower before dinner. We had dinner at the place where we got married, overlooking the lawn where our ceremony was. It was great food and incredible to sit and remember our ceremony and reception at the very locale where it all happened. After dinner, we headed home to enjoy dessert: a replica of the top layer of our wedding cake! Here are some pictures from dinner and dessert:

Being a goofball during our caprese appetizer

Dinner - YUMMY! We split it, so excuse the plating. That is our bad job!

On the lawn where we got married

You know it's a special occasion when...

CAKE!!!

All in all it was an incredible day with my incredible hubby!! We had such a great time that I'm already looking forward to next year's anniversary - but I can't wait for all that will come in between!

One Year of Marriage - My Wedding Vows

To my beautiful wife - Happy anniversary! This year has definitely flown by, but I'm so glad that we were together for the flight. I love you so much and I can't wait to see what this "paper" day holds.

I hope the vows that I said to you on our wedding day are backed up by my actions every single hour that we share together...

My vow to you - May 22nd, 2010:

Mandi, I know that you have been dreaming of your wedding day since you were a little girl. And although I can’t claim that I ever dreamed about this day as a little boy, I now know that it was you I was dreaming of when I became a man. I could stand here and tell you all of the reasons that I love you, but we’d miss our honeymoon.

I just want you to know that you’re my inspiration. You have given me a zest for life that I’ve never felt before. Your smile, love, laughter, winks, hugs, kisses, drive, trust, spark, words, glances, encouragement and your support, fuel me each day and give me the energy to be who I am. Before you, I didn’t quite know what my purpose was. I now know that it was to be your best friend and your husband. No matter what lies ahead for us I will see it as a journey; one that can only be completed by the two of us together, with God by our side.

I promise to you today before God, our family and friends to love you unconditionally. I believe that God has been preparing us for this moment and for our future together since the day we were born. Before this world was even created, I believe that God chose you as a perfect compliment to me.

Through the good and bad, I want you to always know that I will be by your side. I promise that you will never again face life alone.

I promise to dance with you in the sunlight and prepare us for the storms. When the storms do come, I promise to hold you and to protect you. I promise to never keep tallies of wrongs, instead give you praise for all that you do which is right. I promise to never let the sun go down on our anger, and to treat each morning as a new day to love you. Our love may be like the ebb and tide of the ocean, but it will always flow.

In times of want, I will do all that I can to make our love rich. And in times of plenty, I will never let our love grow poor. In sickness, I will nurse you back to health. In health, I will do everything I can to watch you fulfill your dreams. In sadness, I will give you a shoulder to cry on. In happiness, I will be there to create memories with you.

When you need someone to encourage you, I want it to be me. When you need a helping hand, I want it to be mine. When you long for someone to smile at, look to me. When you want to tell a story, turn to me. When you feel weak, take my strength.

When my strength isn’t enough, I promise that I will call out to our Lord in Heaven. I promise to lead by example in our relationship with Christ and remain faithful to Him all of our days. I promise to lead us in a life of worship and to always put the Will of the Father before our own.

I will not forsake you or these vows that we have made, but rather strive to show you my love for the rest of our lives. This is my promise to you: From this moment, everything I am and everything I have is yours and for eternity my love for you will remain.