Monday, August 11, 2014

A letter from 40 year old Andy to 18 year old Andy

My chance to be Marty McFly!

Dear Andy 1991,

I just wanted to say hello and talk to you. I'm coming to you from the year 2014. There have been a lot of changes in the world but especially with us (you and me). I know that you're going through a rough time. You just turned 18 and started college and now Howard died and he was your best friend growing up. In 2014, I actually have 2 dogs but I still celebrate Howard's birthday every April 1st. I don't celebrate it by putting a candle in a burger like I used to. Now I just think about him and remember how loyal he was. I have a girl dog Magic and a boy dog Buddy. Magic is like Howard in that she's kind and always there when I do my therapy. Buddy is crazy like Howard was and he has that amazing sense that only Howard had to know exactly when you needed to be licked in the face. Man, I still miss that great ball of brown fur.

Howard was one of a kind.

I know that you feel ugly and awkward and that feeling won't go away for a while. I know you're afraid to talk about your cystic fibrosis and you're even embarrassed by it. I have several promises to make to you. One, things will get worse before they get better...but they will indeed get better. Two, that machine will get smaller and quieter. I know it's obnoxious. You are actually going to want to talk about your cystic fibrosis one day. Remember that being a leader is a lot more important than being a follower especially with the platform that you'll have. Being different is not necessarily a negative. It can lead to opportunities that for many would be impossible.

Andy, you have an issue with anxiety and depression. Get help. You may think you look weak for doing so but it's quite the opposite. Trust me. If you don't get help for you, get help for the people in your life right now and those you will someday meet.

I know you're afraid to date because you feel like girls look at you funny. Maybe you should stop shopping at K-Mart to buy your jeans and comb your hair every now and then. Sorry, cheap shot. Anyway, you'll meet a guy named Aaron and he'll help you with how you dress and a change in attitude in regards to dating. Listen to him even if he insults you a little bit. It's for your own good. You will finally start dating in college and CF will be a topic that you will have to talk about. It won't be easy but you'll see that these girls that are dating you only care about you and that's why they ask. If you care about them, you'll need to be open about the topic and less apprehensive when it comes to talking about it. It's a two-way street.

So here's where we stand in 2014...yes, 2014. You turned 40! I know you thought you wouldn't even hit 25 but you showed the world that you could fight. On your 25th birthday, it came to you that you needed to start making a difference and that dream about that little girl you've been having for a long time, it's finally going to make sense.

You found your one and only and got married. You have 2 kids. Yeah, that's crazy, right? You didn't think you could have kids. Medical science is an amazing thing. I won't tell you what genders your kids are but just know that no one will ever doubt they are your kids when they look at them.

You'll have your ups and downs with cystic fibrosis. You'll be introduced to IV antibiotics and several new treatments. You'll be doubling and sometimes tripling your therapy daily. You'll also become a workout fanatic. I know that sounds crazy because right now you look like a bean pole. You finally ran the Peachtree! Exercise is a key to beating cystic fibrosis. The doctors aren't harping on that yet but I'm right on this one.

You're going to get an opportunity to work with your father. Take it. It has nothing to do with the fact that the company ends up thriving. It has everything to do with getting to know your father. He's a good man.

Here are 20 more things you may want to know:

1. The Karate Kid was re-made. Yeah, I was pretty pissed too.

2. Atlanta has the biggest aquarium in the world now. No ocean but plenty of sea life. Makes sense, right?

3. You hated to read for most of your life and English class was not your favorite subject but believe it or not you end up becoming an author.

4. Your 5th grade teacher told you to sit down one day because you had trouble memorizing a poem and speaking in front of the class. You'll show her.

Ms. Stansbury, thanks for the motivation.

5. Don't stop the corny jokes. A sense of humor is important when dealing with a disease like cystic fibrosis. Yeah, I know you sound like a moron and your friends tell you that your jokes are horrible but it's your comical self that makes you the guy that so many people like. More importantly, that's the person that you like.

6. I know you hate your nebulizer but one day you'll figure out a way to raise CF awareness using it as a central storyline.

7. You are not alone. I know it feels like it right now but there are a lot of people that have the same feelings and concerns that you do.

8. If someone knocks on your dorm room wall because your therapy is too loud, knock back. It's time you stood up for yourself.

9. A cure is not as unrealistic as it once seemed. Take care of yourself and when the day comes, you'll be ready.

10. Remember everyone who told you that you couldn't do something because of cystic fibrosis. Write their names down. One day you'll prove them all wrong.

11. Don't cry during the movie "Titanic." Your roommate Ross will never let you live it down. My wife (one day to be your wife if you're lucky) has reminded me that if you get an itch one day to dye your hair blonde, don't scratch it. However if you do, make sure NO ONE gets a picture of you afterwards. That's blackmail.

12. If someone tells you about a stock called Enron, don't ever talk to that person again.

13. Game 5 of the 1994 NBA Finals is one of the most important telecasts ever and it had nothing to do at all with the game itself.

A historic moment during the 1994 NBA Finals

14. I realize it's 1991 right now and the Braves are doing amazing. Avery, Smoltz and Glavine are the three top Braves pitchers right now (though we'll get a guy named Maddux soon who is not bad either). I will tell you this. In 2014, one of these 3 is in the Hall of Fame. One of them will most likely be elected next year. And the other will have more significance to you than either one of the other has to do with his last name.

Great name!

15. Listen to your grandmother when she tells you stories about her Holocaust experience. That woman is an example of strength and courage.

16. If you need some alone time, go to a showing of "Glitter" starring Mariah Caray. Trust me, no one else will be around.

17. You'll learn a little bit more about your older sister. I don't want to tell you a lot but you need to ask Mom more about her. I know you just assume not know who she was or why she died but you need to know. It's pivotal to who you become.

18. The Braves won a World Series...yeah, enjoy that day because it's not going to be much better for any of our sports teams for a while.

19. A girlfriend of one of your old fraternity brothers is having a party in 1999. Your friend Ira is going to ask you to go. I don't care what kind of mood you're in that day, GO TO THE PARTY. That's where you meet the girl who will change your life. Dress nicely too. Remember, no more K-mart stuff!

20. The best has yet to come.

Hang in there my friend.

Best Wishes,

Andy 2014

Friday, August 1, 2014

The "Vest" Thing to Happen for my CF in a long time

Hello everyone,

It's been a busy few weeks.

Two weeks ago I got to speak at my alma mater The University of Georgia. The speech went great. I had a lot of good feedback and was thrilled to have so many friends and family members in the crowd. I have 2 more speeches coming up. One is scheduled for Chattanooga and the other in Kansas City where I've made time to visit Kaufman Stadium to watch the Royals play.

Honored to have Abram (pictured) and his wife Cookie at my speech

Andrea, myself and the kids were just in Rhode Island for my cousin's engagment party. It was a wonderful weekend. We celebrated Andrea's birthday while we were there and took a trip to Boston (see the picture attached). The kids were great on this trip. It was great to see my cousin Barrett so happy. It was also wonderful to see my Aunt Loretta (Barrett's mom). She is such a wonderful person. And of course it was wonderful to see Barrett's fiance Alma.

25 again...thanks Aunt Loretta for going above and beyond to make Andrea's birthday special

Boston strong

We got Buddy back from his month-long training session and he seems to be a new dog but a bit bigger. He's still as cute as ever though. Now Andrea and I are the ones who are in training.

On the Health Front...

Well I received the Afflo Vest a few weeks ago, a new product out of Europe that only requires a battery rather than electricity to work. I'm reporting my findings to the Emory Clinic as I am the first patient from the clinic to use this vest. So far, so good. I'm combining it with the Hill-Rom vest in the morning and then using the Afflo Vest at lunch and then driving home. Yes, I said "driving home!" The advantage of this is that I get an extra hour to spend with Andrea and the kids. All I have to do when I get home is clean the nebulizers and charge the battery for the Afflo Vest and Trek S nebulizer machine. I've only been following this plan for a few days but I have to say it's a welcome change. If my PFTs go up after using this vest, this change will be permanent. The other great thing is now I'll be able to do something that I never in my life thought I could do...overnight camping!!! I've always wanted to have the freedom to do something like that. I know it sounds silly that someone could put this on their bucket list but for someone with CF it's not ridiculous at all. If you're worried by the way, doing my vest in the car is nothing like texting and driving. I'm watching the road the entire time. I just hope to avoid any speeding tickets as the officer will probably have a lot more questions than "Do you know how fast you were driving?"

"We got a code 405082 over here." "What's that, officer?" "I caught him nebulizing, vesting and driving, sarge!"

Just so you can understand how important it is to have a machine that is easy to travel with, here is a shot of my old machine which still lies in a closet in my parents' house. The machine, a 1989 model, still works today but is 50 times louder than the Afflo Vest, has lights to warn me about fire hazards and weighs at least 75 pounds! The loudness was a problem at school when others around me were trying to study hence the constant knocks on my dorm room door whenever I used it. That's enough to make any CF patient feel alienated. The fire hazard always scared me because I had to be sure to keep water away from it. I didn't feed it after midnight or let it see sunlight either just in case. Ha Ha! The weight was the biggest problem as it was almost impossible to fly with it. Thank you Hill-Rom and Afflo Vest for making my traveling a lot easier.

The dinosaur of therapy vests

I'm hoping that my PFTs will improve over last time. I have felt really good lately. I even shocked my trainer yesterday as she thought I'd be begging to quit after our most recent workout. Instead, not only did I not beg to quit, but I broke my record on the row machine. My current record for 250 meters was 2:06. Today I did it at 1:47...and that was at the end of my workout! I hope it's the Afflo Vest or maybe it's the fact that I'm doing my Hypertonic Saline 3 times a day during the week or maybe it's because it's warm out and I'm getting more outdoor activity. I'm also running a lot faster on the treadmill. I ran the Peachtree in 80 minutes and was gassed. I was so frustrated with my performance that I changed my running style. Instead of running 15 minutes at 4.0 on the treadmill. I'm now doing three 5-minute intervals between 5.0 and 7.0 and sprinting the last minute for all three. The change has also shown up on the softball field as I'm sprinting around the bases as if I'm back in my twenties. I hope it will show up at the doctor's office, too.

Just "running" the Peachtree isn't enough anymore

The great thing about the new vest is it seems to reach places that the Hill-Rom vest didn't and has different modes. It's not just vibration. I am continuing to work my tail off in the gym and at home. I'm very lucky to have an amazing wife and two really good kids. I'm not working hard just for me. I am doing this for Andrea, Avery, Ethan, Magic and now Buddy too.

Anyway, I hope that everyone is doing well.

Live your dreams and love your life!

Thanks to a great support system and the new Afflo Vest, that's exactly what I'm doing.