Monday, December 8, 2014

A health update & life in the world of CF

Hello everyone,

I hope that all of you are doing well. My pulmonary function numbers were up in November from 74% to 82% so I was thrilled about that. Some have asked what I think the reason could be. I'm using the new Afflo Vest twice a day during the week along with the Hill Rom once a day. I'm also running quite a bit more on the treadmill. I've doubled the time and distance on my runs. Other than that, I have not made a lot of drastic changes. I know that it's only a matter of time before cystic fibrosis rears its ugly head this winter. That's not me being negative. I'm just being realistic. I've enclosed my latest picture from the gym to show you how hard I've been working.

CF must stand for Can Fight (notice my hand gestures)

I've been traveling around the country quite a bit the last few months speaking to raise awareness for cystic fibrosis. I have spoken in Reno, Orlando, Kansas City and Chattanooga. I have to admit that while I enjoy spreading the message that traveling with all of my CF equipment is extremely difficult. First off, it's heavy and it's usually just me. Secondly, the security line involves an extra 15 to 20 minutes for me to explain what the heck that vest is. Third, it's stressful making sure that I don't forget any of my meds when I travel. Still, if I reach one person along the way, it's all worth it.

It's been a tough winter for me emotionally. The CF world has been filled with death including the husband of one of my friends. I didn't know him very well but I often followed his journey and knowing that his wife lost her husband and his adorable son lost his father is quite painful. It's forced me to wonder what my kids would do without me. How would they turn out? They have a great mom so I know they would be okay but I definitely want to play a role as they grow up to be young adults. All I can do is work hard and hope for a little luck along the way.

I may be on her shirt (thanks Aunt Susie) but Avery as well as her mommy and brother will always be in my heart.

While asking CF patients around the world about being in our Katy Perry video, I've come to learn that most people have trouble doing the video. The reason is generally not because they don't have enough time nor is it because they're embarrassed to show their nebulizer on camera. The reason predominantly is because they're in the hospital. That's an unfortunate part of having this disease. That's the reason why this video needs to be made and why we must find a cure. Too many people are getting sick. Too many people are in the hospital. Too many people are dying.

Fear has surrounded me my entire life thanks to cystic fibrosis. One subpar doctor's appointment when I was young meant talking about months of antibiotics and more visits to the dreaded pulmonary division of Grady Hospital, the same hospital where people were carted in after being shot. (On a strange note, Grady is the hospital that is now featured in The Walking Dead). I've noticed that those memories have kind of programmed me to be the way that I am. I live in extremes when it comes to health. My daughter comes to me to tell me about a headache the other day and in my head I'm thinking...brain tumor. My son falls and my first thought is a break, a possible surgery and a lengthy rehab. These aren't exaggerations. These are true examples of just the past few weeks of how I think the worst when it comes to health. Some people try to imagine the worst case scenario just to be prepared. I seem to think it's a reality that it's going to happen so I don't even think about any potentially good news. When I wrote "Alive at 25", I interviewed several people with CF. It was the first time I'd had any sort of contact with CF patients other than one previous encounter when I was a kid. I spoke with two fellow patients over the phone and through e-mail. Both Jason and Kathy were great athletes. Jason worked for the Charlotte Hornets at the time while Kathy played college hockey. Both told me how important exercise and sports were to succeeding with cystic fibrosis. Both were role models of mine who gave me hope that this disease was beatable. Both died several years ago from complications of cystic fibrosis.

CF is not prejudiced. It doesn't care what religion you are, what color your skin is or how old you are. It just kills anyone that it can. First, it destroys your lungs and pancreas. Then it steals your hope. Then it takes your life.

Does this mean I won't work hard because I think everything I'm doing is useless? Absolutely not. One day there will be a cure and my goal is to be ready for it and my second goal is to show those that are younger than me that they can be ready for it too. I'm not invinceable. Not even close. But I am a fighter. I am someone who doesn't quit when the going gets tough. I can't. I have too much on the line. I have a beautiful wife and two amazing kids. I won't quit on them. I can't quit on them. What kind of example can I be to my children if I just sit in bed and mope? You'll find a lot of CF patients who are like me. We can joke about bad news. We can smile when everyone around us is frightened. We all grew up a lot faster than we should have had to.

It's easy to fight a disease when you have a support system full of superheroes.

As I conclude, I don't want to give the impression that everything is negative. There have been a lot of positive things this winter, too. My Nana Rose, a survivor of the Holocaust, turned 90 last week. The same woman who lived underground and saved a little baby from her likely demise is still going strong. She is amazing! My softball team is once again in the final 4 as we play tonight to try and win our 3rd championship in the last 3 fall seasons. Ethan is playing basketball this season and Avery is back at it with gymnastics. Andrea is kicking butt on the tennis court and we have a lot of fun plans this winter. The Katy Perry video is coming along nicely though I still have yet to reach Katy herself. Still I'm not giving up. That's one thing cystic fibrosis has taught me. Quitting is not an option.

Happy 90th Nana Rose!

I wish all of you the happiest and healthiest of holidays.

Live your dreams and love your life,


Tuesday, November 11, 2014

And the winter is...

Many of us watch a two-hour movie like “Rocky” and think we can overcome the odds like that. We can win against even the toughest of opponents. Success comes to those of us who work for it no matter what.

First off, that was a movie.

Second of all, it takes a far longer time to defeat a resilient adversary than two hours.

Third, Apollo Creed doesn’t hold a candle to depression.

Depression is a much tougher opponent

I’m generally a positive person as most of you who know me would probably attest. Still I’m having a difficult time these days staying positive.

It has nothing to do with my family. Andrea and the kids are doing amazing. Ethan’s sports enthusiasm, Avery’s humor and Andrea’s love are what keep me from losing it most days.

From those who don’t suffer from depression, I hear the usual remarks. “Why are you so down?” “Smile once in a while.” “There are so many people worse off.” “But Wish for Wendy was so great!”

What people don’t understand is that depression isn’t usually caused by one thing in particular. It’s just a feeling that gets progressively worse and people like myself need medication and/or to see a therapist to maintain some sense of sanity.

This time of year is predominantly worse than any other season for me. I discussed this fact with my therapist the other day and decided to detail all of the things that have caused me to despise the winter time. I’m dedicating today’s blog to providing a list of these issues.

For most individuals, winter depresses because we wake up and it’s dark and we leave work or school and it’s dark. That’s a part of why the winter brings me down but only a small part. My reasons are more specific to my past.

As I write this, I also just got the news that one of our closest family friends Dr. Laurence “Larry” Rivkin has passed away. Dr. Rivkin was an amazing man who was close with my parents and was like a family member to me. Dr. Rivkin was also a pulmonologist and was always one to give me advice regarding my physical and also my mental health. He was a key in getting me into Ridgeview years ago, a move that dramatically changed my life. My family will miss Dr. Rivkin greatly as will so many others. This means I will be going to a funeral this week as well as facing my doctors at my CF Clinic. It’s not going to be a great week.

Dr. Rivkin was always there for our family. It seemed whenever we had a question that he had an answer. Sadly I know that there will be so many questions left unanswered.

Here are 7 reasons that winter has been a tough time for me and how I’m looking for solutions to make things better.


PROBLEM: My Health

One, this is primarily the time of year where my thoughts turn toward my health as I’ve been down and out from CF most winters. Cold weather creates more pulmonary exasperations. I don’t just worry about me. I worry about doing less and therefore asking my wife and kids to do more. It seems so unfair to me. I’m already on an oral antibiotic as I called my doctor because my cough was worse than normal. It wasn’t all that noticeable to those around me but I could tell. I’m trying to be smart and do things to keep me strong. I have my doctor’s appointment this week (Thursday) to check my PFT’s and also to do a bone density scan to see if I have osteoporosis. I’ll also be checking my glucose in the next few months to see if I have CFRD (CF related diabetes). It’s a lot to deal with.

SOLUTION: Positivity

My solution is to constantly push myself in the gym. I’m still working out with my trainer twice a week. I’ve gone from running a mile a day on the treadmill to 1.5 to 2 miles a day. That’s an extra 3.5 to 7 miles a week which should help my lungs. I also have to understand that if my lungs are having issues or if I do have Osteoporosis or CFRD that it’s not the end of the world. I will just have to do things to improve them and those are all possibilities. Do I feel horrible right now? No, in fact, I think I’m in as good a shape as I’ve been in a long time. No test results can change that. Dr. Wolfenden, my doctor who passed away a few years ago from breast cancer, used to tell me that it’s not what the results say. It’s how I feel that matters the most. The results are for the doctors to make adjustments to keep me strong.

Battling cystic fibrosis is a 24 hour a day, 7 day a week job but in the winter it feels even longer.


PROBLEM: Depression

This is the time of year that my depression rears its ugly head. As I mentioned earlier, I spent 3 weeks as an outpatient at Ridgeview several years ago. I don’t talk much about it but it was an eye-opening experience for me. I learned how to manage my issues and cope with my problems. I found my psychiatrist there and he has been a big help in turning my life around. I still claim that admitting you have depression and/or anxiety doesn’t make you weak. In fact, it does the exact opposite.

SOLUTION: Seek help

My bouts with depression this time of year are why I made sure to see my therapist this month. I also scheduled a bi-monthly massage to cool my anxiety. The important thing is to monitor my issues and communicate them with my wife and my doctors. Sometimes that’s easier said than done but it’s a must to being mentally strong.

Battling cystic fibrosis is tough. Battling cystic fibrosis AND depression feels nearly insurmountable.


PROBLEM: Focused on dying

Many of my CF friends have passed away in the winter time and sadly there have been a lot more CF fatalities lately. It’s almost become commonplace to hear that someone from CF is in the hospital or worse, died.

SOLUTION: Focus on living

I’m working on a Katy Perry CF video this winter to bring a little bit of the positivity back. It will be like the nebulizer video from last year. I believe that will help my spirits. I also believe it is my off-season work to beat CF. Wish for Wendy raises money. These videos raise awareness.

Katy, I hope I can "roar" when this winter is over.



Four years ago this month I lost one of my best friends as Rusty Sneiderman was shot and murdered. Over the next few years, we dealt with defiant lawyers, hate mail, constant calls from the media and tumultuous trials. It took a lot out of myself, Andrea and everyone else involved.


I can just remember Rusty for all of the good things he brought to me and my family. He left us way too soon. I still miss him most days.

Buddy, I miss you.



Wendy died in the winter. While Wendy was born and died before I was born, I could still feel the pain that Wendy’s loss put on my parents. My mom used to remind me every year around Wendy’s birthday how lucky I was. I didn’t truly understand why she pushed this upon me until I was older and had my own children.

SOLUTION: My new family

The solution to this is to be a good dad to my children and help them understand how fortunate they are to be healthy. A lot of people take their health for granted. Sadly, I’ve never had that opportunity. My parents have always taught me to be grateful and giving. I hope that Andrea and I will be able to teach those same habits to our children. I also believe that the success of Wish for Wendy gives my sister’s life more positive meaning.

It's hard to measure what type of impact a person I've never met has made on my life.



As far as sports go, baseball is far and away my favorite sport and it is over in the winter. Some would argue it ended early this summer for the Braves. Having to watch the Falcons and Bulldogs unravel is not a cure for making me feel better. My softball season is also over until March.

SOLUTION: From player to coach

This winter, I’m going to focus on playing baseball with Ethan and helping Avery to learn softball. She wants to play next season and I’m going to be her coach. She and I have a deal. I can’t wait!

I can't wait to teach them everything I know about the game I love.


PROBLEM: Highs and Lows

Wish for Wendy is in the books. I see so many of my friends for 12 hours that day in October and all of a sudden I don’t see many of them for another 4 to 6 months. It’s as if there is a big high and all of a sudden it’s like crickets chirp for the next several months.

SOLUTION: Making an effort

I need to make more of an effort to see my friends even when it’s freezing out. The introverted side of me has trouble making that effort. I still remember those days at the TEP house at UGA where I could not walk out of my room. I would grab the door knob, start to turn it and then let go. Sometimes you have to do things that are uncomfortable and for me that means making more of an effort to be social.

Sometimes I feel like this when Wish for Wendy is over. I am still talking but everyone is gone.


So over the next 4 months, I will fight to be positive. I will continue to focus on my health but try not to over-analyze every aspect of it. I will communicate with my family and my doctors and make every effort to socialize with my friends.

This is the time of year where most days are a battle for me. I’m not going to pretend like this is “Rocky” and I’ll just fight my way to the top in 2 hours.

My goal is just to be standing in 4 months.

I look forward to the challenge.

Now ring the damn bell!!!

Live your dreams and love your life!


Tuesday, October 7, 2014

The positives and negatives about having cystic fibrosis

I often get asked what it's like to have cystic fibrosis (CF). It's difficult to explain but I'll try. Here are 5 factors that affect my day and are brought on by CF. I've learned to put a positive spin on even the most negative one.

1. Doing my vest every morning


I wake up each morning knowing that I will be doing two hours of treatments per day. That's tough to stomach especially during the work week. My chest tends to have scratch marks some days from all of the vest exposure. I develop CF shoulder when I travel because I'm carrying the 30 pound machine all over the place. Finally, the machine is really loud so it's hard to hear anything while I'm doing it.


BUT it's not like I woke up one morning and all of a sudden I had CF. That's the bright side. I was born with it. I know nothing different. I get to watch as much TV or play as much X-Box as I want while I'm doing my vest. It's not like I'm going anywhere. Now with the battery-powered vest, I can work out and play with the kids too. Also, the kids seem to like how I sound when my chest is vibrating. I've also gotten really good at lip-reading since I can't hear with the machine on.

It can be dull but at least the kids love it!

2. Taking 30 to 40 pills a day.


Each morning I have to organize the bottle that I take to work or on trips. I can't forget a pill. I have to remember to order them when I get low. I can take up to 16 pills at a time so that can be difficult especially when I'm at lunch with people who don't know I have CF. It's a bit difficult to explain. I'm sure outsiders think that I have a drug problem. Ha Ha!


If there was an Olympic Games for pill-taking, I've got to be one of the favorites. It's also a great conversation piece and leads to raising awareness for CF.

And the gold medal goes to...

3. Knowing there are others with this disease that are passing away.


I get a post probably monthly and sometimes even weekly about someone with CF passing away. Reality creeps in that I have a terminal disease. My stomach twists and turns. Was this person in my nebulizer video? Am I doing enough to help raise money to find a cure? Am I next?


Hard to find but I'd say realizing that every moment needs to be appreciated. The irony is that life itself is a terminal disease so we all should appreciate every moment but I think especially with a disease like CF that I've learned to really focus on the moments and enjoying them.

None of us knows when our time is but CF has taught me to appreciate whatever time I have.

4. The fear of every moment...


I feel like no matter how good a doctor's appointment I have, there's always a concern. Do I have CF-related diabetes? Have I had 14 vials of blood taken yet to prove it? Have we done the bone density test to see if I have Osteoperosis? Should I be screened for any of the cancers that CF makes you more likely to get? And this doesn't even include the biggest problem with having CF...the lungs!


I take care of myself like few others. I watch what I eat for the most part. I work out 7 days a week. I go to a personal trainer. I may have CF but I'm actually in pretty incredible shape.

Every morning I have to be in beast mode.

5. Not being "normal."


It's difficult to turn down an invitation to go out because I have to go home and do my therapy. It's tough not being able to go out of town without carrying a huge vest machine and aerosol device. It's not that fun when security constantly checks your bag in front of everyone. I have to make sure before I go anywhere that I bring my meds because I need them to eat.


Many of the opportunities I've gotten have been due to cystic fibrosis. I've been able to speak at many places. I've been able to throw out a first pitch at a Braves game and run with the Olympic Torch. In many ways, CF has made my life very special.

So in conclusion, CF greatly affects my life however it's not all bad. I am afforded many opportunities that I would not have been afforded without CF. Life isn't easy but is it easy for anyone really? Everyone has something. At least I know what my something is and I'm used to it. CF has taught me many things or maybe it's forced me to learn many things. It's taught me how to become self-motivated. It's shown me how precious life is. And most importantly, it's taught me that despite everything I'm very fortunate for the things I have.

Thank you CF!

I am asked often if I would have rather been born without CF and lived a "normal" life. Just when I'm thinking about saying "But of course," I remember a while back someone telling me their kid with CF saw my nebulizer video and it's now their favorite video and it makes them feel less insecure about having the disease. I feel my CF story helps younger people with this disease. Maybe I was given CF to help others. So I guess my answer would be "I'm ok with being born with long as one day myself and 70,000 others are cured!"

Live your dreams and love your life,


Life in Andyland

It's been a while since I've written. Life has been pretty good so far but this is always a tough time of year for me. As it gets colder out, my allergies get worse. As my allergies get worse, my lungs usually follow. Enterovirus 68 is pretty scary. The virus seems to be spreading and it scares me that it can take someone completely healthy and put them in the hospital. Imagine what it can do to those of us with CF. Speaking of having CF, there have been a lot of deaths lately to CF patients around the world including a young person just today who happened to be in my nebulizer video. Many of them were much younger than me. We need a cure so badly.

As for me, I'm continuing to work hard to stay well. The new Afflovest has been great. I do it in the afternoon and in the evening. I'm still doing my Hill-Rom vest during the mornings. The one bright side is our new puppy Buddy loves the Hill Rom vest's vibration so much that he snuggles with me to loosen his phlegm as well.

Along with my 120 minutes of vest therapy,I am doing my hypertonic saline three times a day and Pulmozyme once a day. I am currently using my TOBI Podhaler this month twice a day. I run for 16 minutes on the treadmill almost every morning and work out 7 days a week. I go to a personal trainer twice a week and she kicks my butt. She tells me that I've reached the point where I'm doing things in the gym that she can't even do, that none of her clients can do...and that includes cardio which can be a CFer's worst enemy.

I'm still speaking quite a bit. I spoke at my kids' school the other day and have speeches in both Orlando and Reno coming up.

Wish for Wendy is only a few weeks away and we're about set. I'm excited about the new ambassador program where teams will be playing in honor of so many brave children with CF. I'm also excited that we will exceed $2 million this year.

As far as family life, it couldn't be much better.

Ethan is a sportsaholic but I'm secretly proud of him. We talk baseball all of the time and he's playing soccer, flag football, tennis and basketball as well. He loves to compete. Every night he writes down the scores of the games he was watching and keeps them in a notebook filed away. We are saving that notebook for when he gets older. When I think about the stroke that nearly took him from us when he was born, I realize what a miracle this kid truly is.

Avery is one heck of a gymnast. She can get in positions that I'd be calling the ER to get me out of. She has taken an interest in baseball and wants to play softball this spring but only if I'm her coach. If that's what she wants, I'm game. She has me wrapped around her little finger anyway. She is doing amazing in school. I credit that to her mom and her genes. If she makes the kids around her laugh by telling stupid jokes, then I'll give credit to myself.

Andrea is doing well. She's the tennis queen in our house. She has gotten so good. I remember when I turned her onto the game. I never thought she'd be the champ of the household. Now she even takes me down in table tennis. I'm not liking this.

Overall I can't complain much. I just hope that I can stay well as the weather gets colder. If I get sick, it's not due to lack of effort on my part and that helps me get through the day. I will continue to fight and most importantly I will continue to dream. Looking at my beautiful family, most of those dreams have already come true.

Live your dreams and love your life,


I'm lucky

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.


Wednesday, June 25, 2014

Another CF drug breakthrough...and what it means to me

It's an exciting time to have cystic fibrosis (CF)!

Who would ever think to hear those words? That sentence alone probably makes me sound certifiably insane.

I mean do I look like a guy with issues? Important note: I'm on the right in this picture.

Cystic fibrosis is one of the toughest, nastiest diseases that the world has ever seen. It doesn't just affect the lungs. It affects the digestive system and the reproductive system as well. It also makes patients more apt to have other diseases and conditions including certain cancers and CF-related Diabetes. Moreover, it continues to be one of the most life-threatening genetic diseases that the world has ever seen.

As cruel as this disease is, there is now some hope. There have been a lot of new drugs hitting the market as well as some great news from drug studies. Here is just one example:

Now if you read this article, the results state that improvement averaged only 2 to 3% and some patients got off the drug due to side effects. There are many that say these numbers indicated that this isn't much of a breakthrough. The truth is though that any type of a breakthrough is still a breakthrough and I as a patient am very excited not only about this new treatment but about the potential of having even more of them.

As a kid, I would have given anything to hear the kind of news we're hearing today. There were no breakthroughs when I was growing up. There were no adult CF clinics. Very few people lived that long. Most people who knew me had never even heard of cystic fibrosis. The common questions then were "Is it contagious?", "Can you just have it removed" and "Is that bad?". Some even asked if it contributed to my poor sense of humor. Due to all the notoriety these new treatments and studies are getting, those questions are becoming fewer and fewer...well except the last one.

Whenever I would go in to see my doctor as a kid and even as an adolescent, the typical answer in regards to when a potential breakthrough would hit was "7 to 10 years" which sounded more like a prison sentence rather than a hope for a cure. I felt defeated because those numbers never changed. I'd heard "7 to 10" when I was 10 and I heard that same timeframe when I was 20.

I acted tough back then but in reality I was scared to death of my prognosis.

Vertex and the CF Foundation continue to work to find a cure and while there is no cure as of yet, there are several new drugs in the pipeline (like the one in the article above) that are either now available or will soon be available to those who badly need them. The combination drug for my genotype is not available yet but I know they are now working on it both in Israel and the United States.

I remember the days when I was in my twenties and had to go to a children's hospital to see my CF doctor. When I went for X-Rays, they asked where my son was as they assumed I was the father since a) very few people lived to adulthood with CF and b) I was in a children's hospital. Or maybe they were taking a stab at my maturity level. They would not have been the first.

Cystic fibrosis works harder than any person in the world. It never takes a second off. Even when we as patients sleep, mucous tends to fill our lungs and we have to cough up several cups of phlegm when we wake up.

CF has changed throughout my life but it has never been removed from my Most Wanted List. As a young kid, it annoyed me because I had to lie down for 30 minutes a day while my parents hit my back, sides and front - a procedure called postural drainage. As a preteen, it aggravated me because I couldn't do the things that a lot of kids could - overnight camp, trips without my parents and being around anyone with even a sniffle. As a teenager until my early twenties, I felt alienated because of my CF. I hated traveling with a 50-pound machine even though it beat postural drainage. The irony was that CF patients are mostly skinny and lack energy yet the machines we used were remarkably heavy for even weight-lifters to carry. For the last 20 years, CF has affected me in trying to have a family, dealing with IV treatments and trying to live life without interruption as an adult.

It didn't matter whether I was a youngster...

or an adult. Cystic fibrosis got the better of me for a long time.

I hate this disease and a few decades ago I would take that hate and use it to hurt myself. I would give in to depression. I would stop doing my meds. I would refuse to read anything regarding research or things I could do to better myself.

Today I have reversed that sense. I now comply with my treatments everyday - now twice a day and sometimes three times a day. Over the last 20 years, I've rarely missed a med or a treatment. I make sure to go to the doctor at least once every 3 months and I am a workout fanatic. I know that somewhere there is someone who thinks that he or she is working harder than me. I refuse to let that be the case. I still deal with depression but I also see a therapist and psychiatrist and take antidepressants. I don't believe that admitting that I have a problem is a shortcoming. I believe, in fact, that it is one of my biggest strengths. I now read countless articles regarding research and listen to other patients to see what they're doing that has helped them be successful in the fight against CF.

Running the Peachtree Road Race, a 6.2 mile run in Atlanta, every year (this year marks #18) is one way I fight against CF.

As tough as CF has been, I'm very fortunate. I have a loving wife. Andrea has helped me with my IV's and been by my side through everything. She knows when to give me encouragement and when I need tough love. Anyone with CF knows that our partners play a huge role as to how well we do.

I have been fortunate in other ways too. To be successful with In Vitro Fertilization once is a miracle in itself. Andrea and I have been fortunate twice. I don't just give my all for me anymore. It's about Andrea, Avery and Ethan too.

I have a lot of people in my corner.

Each day I do 2 hours of treatments, take 30+ pills and make sure to exercise for at least 30 minutes. I used to be bitter about the regimen I had but now I'm proud that I can still do these things and be a CF fundraiser, a full-time employee and a loving family man as well.

New treatments or no new treatments, I'm beating this disease!

My pulmonary function has diminished over the years which is common for people with or even without cystic fibrosis. Still I'm in really good shape for someone with the disease. Maybe in 7 to 10 years I won't have this disease anymore.

Now more than ever that seems possible.

Like I was saying, "It's an exciting time to have cystic fibrosis!"

And now you know why.

Live your dreams and love your life!

Best Wishes,


Thursday, June 19, 2014

An update on my health

As I sit here on a warm day in mid-June, I have a lot to be thankful for. I have been working my tail off the last few months to get my health back to where it needs to be. I think I've done a good job. My PFT (Pulmonary Function Test)numbers have gone from the high 60's to as high as 80 on a recent PFT at home. I did a PFT at home yesterday and my score was 78. My weight has gone from the mid-160's to around 175. I'm now doing my treatments three times a day as opposed to two. I'm also doing a device called the Acapella three times a day as a way to get rid of mucous. I'm also in the midst of ordering a new vest which will be much lighter and easier to transport. I have been working on eating better which has included more fruit and less M&M's. I have to thank my wife for all the mangos and grapes. I continue to work out 7 days a week which includes working out twice a day some days. I continue to go to a trainer twice a week.

What's my motivation to get better? It's simple. I don't just want to be at my kids' high school and college graduations. I still want to be running the Peachtree Road Race at that point. Speaking of the Peachtree, there are only 15 days till the big race. This will be my 18th consecutive year running this 6.2 mile run.

I was thinking about compliance the other day and realized that I've done my therapy virtually everyday for the last 20 years (since I graduated from college). That's 7,300 days. I put Cal Ripken to shame.

Work is good. When I came to DiversiTech in 1997, we had never had sales of $1 million in a day. Earlier this month, we broke $2 million and have averaged more than $1 million in sales each day this month. We went from a small company in Lithonia, Georgia to a run of over 5 years in the Atlanta Business Chronicle's Top 100 Private Companies in Atlanta. I'm proud to say I played a role in that.

The kids are doing great. Avery has advanced another level in gymnastics and is at gymnastics camp in Tennessee. The overnight camp thing is a bit difficult for me. While many of my friends are going to camp reunions or talking about camp memories, I sadly don't have any. I couldn't go to overnight camp due to my cystic fibrosis. It's one of my biggest regrets. While I'm thrilled that Avery gets to take part in such a wonderful tradition, I wish I'd had those same memories that we could share.

I really miss her!

Ethan has become a sports nut. He loves soccer, baseball, football, basketball, tennis, swimming and I'm sure I've skipped some. I caught the kid watching the WNBA the other day. I think we have the next Bob Costas in our house.

The "E" in Ethan stands for ESPN.

Andrea and I are doing well. We are thrilled with the new house. We also have a new, not that kind of new addition. Buddy the puppy joined us a few weeks ago. We rescued him from an organization whose founder's husband plays at Wish for Wendy. Small world.

He's our Buddy now!

We just started meeting on Wish for Wendy and I know it's going to be another successful year. I can't wait.

Oh and for those who loved "I Need a Nebulizer," let's just say I may have another idea up my sleeve but not for a while.

I hope that everyone is happy and healthy.

Live your dreams and love your life!


Wednesday, May 28, 2014

Prepared for tomorrow

I see my doctor tomorrow and will be doing my PFT's. PFT's stand for Pulmonary Function Test though I believe the acronym should stand for Pressure Filled Test. I have a feeling a lot of people who battle this disease would agree with me.

For those of you who don't have cystic fibrosis or don't know anyone with the disease, PFT's are the equivalent of taking a final exam that means a high percentage of your final grade. In other words, my blood pressure may be good, my weight may be fine and my lungs may sound clear but it's the pulmonary function test that usually determines a good appointment versus a bad one.

When doing a PFT, you have to take a deep breath and then blow as hard as you can for several seconds and then breathe back in. Each patient does this 3 to 6 times or until he or she is completely out of breath. The doctors then use these tests to determine the amount and the rate of air that you breathe in and out over a period of time.

I have prepared for this test since the day the IV's were removed from my right arm back on March 27th. I have been going to a trainer twice a week, adding another aerosol once a day on weekdays and have been gaining weight to the best of my ability. I'm doing treatments three times a day now and working out 7 days a week (sometimes twice a day). I'm even taking practice PFT's with a new portable device.

I'm working hard as I'm motivated to stay strong not only for me but for Andrea and the kids.

Who couldn't be motivated by these 3?

A few months ago, I weighed between 165 and 170 and my doctor was adamant that I gain more weight. Today I weigh between 175 and 180.

The test has me on edge this week but tomorrow I'll put on my game face and show the doctors at the clinic that over the last few months I've been making CF stand for Can Fight.

Regardless of how my appointment goes, I know one thing for sure.

"I have cystic fibrosis but it will never have me!"

I've never been more sure of that.

Thanks for reading.


Update: Andy's PFT results were a 78 which was 6 points higher than last time. No IV's! Great news!

Thursday, April 3, 2014

One Heck of a March!

The journey on IV therapy officially began the morning of Wednesday February 26th when my PICC line was inserted at Emory hospital.

Over the last 4 weeks, I tried to make CF stand for Can Fight!

Whether you've had IV antibiotics one time or fifty times, it's always scary when they tell you your numbers have gone down while you're supposed to be on the drugs that should help you. That's the news I received from my doctors two weeks after I received my PICC line. Instead of getting the PICC line out that day, I was on more drugs and faced a potential hospitalization if my blood work continued to worsen. The drugs had done some damage to my kidneys and my weight had gotten down into the mid-160's. I'm normally around 175. I refused to go to the hospital though. I asked that they take blood again and see if my numbers were a bit better after going off the drug that was negatively affecting my kidneys. If the blood work was still bad, I was okay with being hospitalized. I received a call that evening that my blood work was indeed better since going off the drug and I also had a CT scan to see how my lungs and heart looked. There was a bit of mucous here or there but nothing they wouldn't otherwise expect from a CF patient. I was cleared to continue home IVs but I was definitely frustrated with the PFT results.

As I sit here, I can tell you the most difficult part of being having a PICC line in was watching Andrea do so much not only for me but for the entire family. She was wrapping my arm before showers, mixing my meds, taking the kids places and taking on the role of pseudo-nurse. It was also difficult not being able to carry my kids up the stairs and throw them into bed like I had in the past. Over the 4 weeks on IV's, I'd spiked a fever, been to the ER twice, and had several reactions to medication. It was a tough 4 weeks but there are many CF patients that go through far worse so who am I to complain.

Nurse of the month for March 2014 (the one on the right)

I'm happy to say that a month after the PICC line was inserted, I was finally able to have it removed last Thursday. My PFTs were up from a few weeks prior though still about 7% from my baseline. I did another week of the inhaled Coliston (an inhaled antibiotic) and started a 28-day supply of TOBI (another inhaled antibiotic) yesterday.

Goodbye PICC line!

I had my first personal training session since I had my PICC line removed on Tuesday and considering much of my stamina was not there, I think I did really well. I was walking up and down 10 sets of stairs with 12.5 pound weights in my hands. I was jumping rope again. I was doing everything possible to get stronger. My arm was still a bit sore. As you can see from the picture, it's still not the prettiest thing in the world.

Red is my color.

Over the last month, I've done over 10,000 minutes of treatments and I can tell that my body is tired. I played softball on Monday and did okay. It wasn't my best performance but I knocked in a run and played half the game. Slowly my stamina is coming back.

The last month has been difficult but seeing Avery smile on the medal stand at gymnastics and Ethan shine on the baseball field did a lot for my mental health. I have a pretty good tennis player for a wife too! I'm so proud of all of them.

That's my A!

I knew E would play for the Braves one day.

As we speak, I'm continuing to work out daily and my weight has increased nearly 10 pounds. Just because I'm off IV treatments, it doesn't mean I can take it easy. CF doesn't take any vacation days so I can't afford to either.

On an exciting note, I just got asked to be a speaker at Terry Third Thursdays which is the monthly speaker for the University of Georgia's business school. I will be the speaker for July. Previous speakers have included Jon Schuerholz of the Braves, Bernie Marcus who co-founded Home Depot and Rich McKay of the Falcons. It's truly an honor.

In closing, I want to thank all of you who reached out to me and Andrea and supported us through the last month. I didn't realize how many good people we had in our lives and I feel blessed that there are so many of you. We are here for you as well if you need us.

Thank you for your efforts and your prayers,