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 CF...as 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