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,


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