Changes

So it's been a crazy few weeks for me and my family.

My company was officially sold today and therefore I am bidding farewell and focusing more on health, family and a passion project (that I'm still figuring out). The company was in the process of being sold for some time so leaving DiversiTech was not an overnight decision for me. It was great to sell the company and have a lot of people prosper from the sale. It was also a relief to sell to a company that was going to keep most of our organization in tact.

Leaving my job is difficult. I've already informed my co-workers and suppliers. I even informed my personal trainer that my days at the fitness center are numbered as it is too far from my house. She looked as sad as I look each time she tells me to do 20 burpies.

If anyone wants to reach me, you can still do so at andy@andylipman.com or alipman2001@yahoo.com.

I want to continue speaking as a profession. I'm already in touch with a few people as to how to take my speaking to new levels. I remember the final episode of Mary Tyler Moore when Mary and her co-workers are extremely emotional as they leave for the final time. I think I'll leave with those same feelings. The last thing I'll take from my office is the name tag that has stuck to my door for the last 18 years.



Mary, I get it.


CF patients rarely have the strength nor the employer support to be able to keep a full-time job. I've been fortunate to have an understanding team and the ability to work at my company for nearly 18 years. I'm going to miss DiversiTech. When I arrived, we weren't a very big company but as I leave we have been a Top 100 private company in Atlanta for more than 5 years running. Doing treatments prior to work, at lunch and as I departed each day just became too much for me to handle. My last day will be this Friday May 22nd.

In other news, the FDA Advisory Council recommended approval for another great CF drug Orkambi from Vertex Pharmaceuticals. It doesn't yet affect my genotype but we are headed in the right direction as it affects 50% of CF patients. There are lots of cool studies going on. Too many to mention here but we seem to be getting ever-closer to a cure for this dreaded disease.



More great news for the CF Community


The girls' softball team I coached made it all the way to the finals. I was so proud of my Ducks specifically number 9 on my team. That's Avery. She came in with no softball experience and a fear of the ball. She leaves as a top outfielder and a 5-for-5 hitting performance between the semifinal and championship game.



Quack! Quack!


My son made the All-Star team. I'm so excited for Ethan. We've been spending everyday lately at the fields. In fact, Saturday I had the wrong time and we arrived 2 hours early and we ended up warming up for half that time. The kid can't get enough of baseball. Or basketball. Or football. I wonder how he became a sports junkie. Yeah, I know.



Play ball!


Andrea is doing great. She's been very supportive during this period of change. She has done an amazing job orchestrating a new home project. A pool!!! It should be ready before the summer. We can't wait!



It's coming along swimmingly.


I'm dealing with some anxiety wondering how my life will change with so many things up in the air, but over the years I've learned how to cope with these sorts of changes. Overall, this is a very positive change. I guess part of me feels like having a fulltime job was another way I was beating cystic fibrosis. I felt that same defiance by having children, being able to exercise daily and by living past my 40th birthday. I will find other ways to defy it though.




My change in lifestyle won't affect my goal to raise awareness for cystic fibrosis.

Just a few more days till I bid farewell to one stage of my life...

or should I say just a few more days until I begin a new one.

Live your dreams and love your life.

Andy

Howard at 39

Today would have been Howard Lipman's 39th birthday. He was my best friend growing up. He was the one I could tell all of my secrets to. When I was dealing with major coughing attacks, he was the one who didn't ask if I should go to the doctor or show constant worry on his face. He just sat by my side and listened to my concerns. He was the one who made me laugh when laughing didn't seem possible. He gave me hope when hope seemed lost. He relieved my fears when I had every right to be scared to death. I loved him and he loved me.

Howard was a crazy guy. He used to drive the girls wild. He was extremely affectionate, but he could be tough too. He once stood up for me when a bully attacked me. Still Howard got in a lot of trouble and I know there are times when my parents wanted to ship him to Antarctica. I'm glad that they never did because Howard...

saved my life.

In the 15 years I knew Howard Lipman he didn't speak one word yet his constant listening spoke volumes. Howard believed in me when the Vegas odds would have called me a longshot. Howard was there when I read the encyclopedia article that told me I would not see 25. Sadly the truth is that my life expectancy was always greater than his but he showed me that living in the moment was all that mattered. Howard was there when I got my first therapy machine. Though he was scared at first, he still sat with me as I turned on that noisy metallic monster. He never saw me as the kid with cystic fibrosis. He saw me as his best friend.

Howard died 23.5 years ago.

The fact that Howard was a dog does not lessen his loss one bit. I never saw him as "just" a dog. I saw him as a brother. I saw him as a great friend. A best friend. And I will celebrate his memory every April 1st until the day I pass.



Howard wasn't just a dog.

We got Buddy last summer. The primary reason I wanted a young dog was for our other dog Magic to have a playmate. What I didn't realize is that we'd found a crazy, mischievous dog who licks everybody who gets close to him. I always wanted my kids to meet Howard. Seems like they're getting that chance with Buddy. As much as I want to beg him to stay out of trouble some days, I look into those doe-like brown eyes and I see that brown crazy mutt who wrecklessly ran into my life 39 years ago...more like ran into my heart. I see my best friend. I want my kids to experience that same unconditional love.



The moment my kids first held Buddy they began to feel a love I'd never thought they'd get to experience.



Now they're experiencing it.

Glad "Howard" is back...

though I still miss the original.

Love you Howard.

YOUR BEST FRIEND

What's the point?

So I was thinking about something the other day.

What’s the point of doing my best when I’ll probably die from this disease anyway?

What's the point of spending every moment of my life dealing with an incurable beast?

What's the point of having dreams when they seem so unattainable?

Some people would say “Well that’s a defeatist attitude!” Until you have a terminal disease like cystic fibrosis, it’s difficult to judge a person for that opinion. These were the questions that filled my head throughout my early college days.

I have a doctor's appointment this Thursday and I don't know how it is going to do. I work my tail off each day to fend off the effects of cystic fibrosis but honestly during some of the more exhausting days of working out combined with the trials of having CF, that question still pops into my head a time or two.

It's taken me a long time but I do understand now "What’s the point?”.

The point is that there are no dress rehearsals in life. You’re dealt a hand and those are the cards you have to work with. You could give up and die. That’s your prerogative but you’re not getting a second chance.

I look at cystic fibrosis as an opportunity to do something great. I look at it as an opportunity to build a legacy. I look at it as a way to create hope for others.

My parents were told I wouldn’t see my teens. When I was 8 years old, I read that I wouldn’t see 25. Most of my life I’ve been chasing the median life expectancy. Now it’s chasing me. I prefer to live my life like anyone else. I have dreams. Heck, beating CF is a dream in itself. I’m not adjusting any of these fantasies because of cystic fibrosis. Yes, the path to achieve them may take longer and that path may involve some obstacles and U-turns but it’s not going to change my motivation to get there. My wife and I had to go through IVF to have children, but fortunately it worked out and we have two beautiful kids. Not the ideal way to have kids but it worked. Dream accomplished. I wanted to run the Peachtree Road Race. When I train, there are times that I have to stop and spit and catch my breath. I've run it 18 consecutive years. Dream accomplished. I wanted to go to college. I had to understand compliance with my meds, deal with my depression and learn from emotional and academic failure. I graduated college in 5 years. Dream accomplished. Not the ideal route for any of these things but the end result was all that mattered...although each journey taught me a lot.



When I was a kid, I was scrawny and sickly - the ideal picture of cystic fibrosis.



As I got older, I realized that the ideal picture could change.

“What’s the point?” The point is anyone can die but not everyone can live. I want to live. I have a dream that my tombstone one days says "Andy died from natural causes." BUT even if I do die from cystic fibrosis, I hope that no one says I lost the battle to cystic fibrosis because I will fight everyday to ensure that CF never beat me. By the way, I don't think anyone has ever truly lost the battle to cystic fibrosis. Each of us fights at some point at varying degrees.



We were always taught that life isn't a fairy tale but with hard work, maybe it can be.

"What's the point?"

We each have a terminal disease. It's called life. Whether I die at 45 or 95, I'm going out on my terms not the terms of the disease that has been affecting my body for more than four decades. Cystic fibrosis has given me amazing opportunities. I've gotten to run with the Olympic Torch and tell my story to tens of thousands of people. I've gotten an opportunity to help people who were void of hope. I remember the line from Spiderman. "This is my gift, my curse." That in one sentence is cystic fibrosis to me. Yes, CF is a curse because I deal with pain, hours of therapy and taking copious amounts of meds every day. It's a gift too though. It helps me to appreciate every single day which a majority of people cannot do. It gives me opportunities that other people my age will never have. It also made me focus on some things that I otherwise would not have been interested in. I got into working out because I knew it might be the only solution to save my life. Now I'm a workout fanatic. I don't think I would have had my heart set on helping a charity if I didn't deal with the struggle of fighting the disease that the charity supports. I don't think I would have developed my sense of humor if it wasn't the best defense mechanism in my arsenol. One of the reasons I was introduced to my wife was because of my story...and for that reason alone, I cannot regret having cystic fibrosis.

"What's the point?"

The point is that I'd rather spend my life living than concern myself every moment with dying. And who knows? We might just see a cure in our lifetime...and I definitely want to be in the best possible situation to take advantage of it. I just refuse to give up on that possibility.

That is the point.

Live your dreams and love your life!



Andy

Foster Care

Seventeen years ago I signed up as a free agent at Atlanta Club Sport so I could meet people and play softball. This guy Tim had an opening on his team and selected me. I didn't know Tim nor did I know anyone else on the team. I was the second youngest guy on the team but liked the group that I was playing with. We went to parties together, went out after games and talked about our love lives, our jobs and whatever else we could think of. I kept one thing from all of these players, the fact that I had cystic fibrosis. I never talked much about my CF. I was embarrassed that I wore a vest every morning and took pills before every meal. I just wanted to fit in. I wanted to be a softball player. I wanted to be Andy Lipman. I didn't want to be the guy with the terminal disease.

A few months into my run with Fluffy En Fuego, one of our players, Bob Foster, told us that he needed our help...again. "Again?" I wondered. Apparently Bob ran a tournament every year called the Cigna Sports Challenge. Bob wanted volunteers for this event which featured Tug-A-War and putting for holes in one just to name a few. Bob told us it was all for a good cause...the Cystic Fibrosis Foundation. I hadn't visited the CF Foundation since I was a kid with my mom. I tried to separate myself from it. Everyone on the team volunteered and finally I relented and agreed to help out. Bob was one of those guys you wanted to support. His car tag read "BMOC" (Big Man on Campus). That's how he carried himself. He was one of those guys who you wanted to befriend. Bob and I went to the softball field early some days and played catch. He was the guy who hit a ton of balls over the fence and had this arrogant, yet funny, way about him.

I took part in the Cigna Sports Challenge as a volunteer and saw 2 young girls with CF who received a standing ovation from everyone afterwards. Bob announced that they were the reason that he did this event. Bob didn't have CF and to my knowledge he didn't have any close friends or family with the disease. Still out of the goodness of his heart, he helped put this event together over by Georgia Tech every year. That day a bell went off in my head. I wanted to run something for CF. That's where the idea of Wish for Wendy developed. Bob's influence had changed my life. To this day, I owe him for giving my life special meaning.

Our first year running Wish for Wendy was 2000 and Bob, as he promised me, put his own team in to help the cause. His Intellisales team had several of my teammates on it and I still have a note from Bob on the first Wish for Wendy poster which told me he was proud to help with this cause. Bob and I eventually went our separate ways as Bob got married and moved to Florida. I still thought about him often and looked him up to see what had happened to him. I hadn't heard anything until a few weeks ago.

I got a note from one of my old teammates Cary that Bob had Lymphoma and nothing was working. He was trying something experimental but odds were it wouldn't work. I contacted Bob's wife to check on him. She forwarded me a letter from Bob to all of his friends. The experimental procedure didn't work. Bob, as we speak, is in hospice care and probably won't be around much longer.

Bob, if you're reading this, thank you for all you did for the Cystic Fibrosis Foundation and for being a mentor for me. I will always be grateful that you took a naive 20 year old kid under your wing and showed him what being a leader is all about. You are a true inspiration and your family will always be in my prayers. It's ironic that the man who gave so much to those who had a disease that diminished their life expectancies is now the one battling a disease that will take his life way too soon.

There's aren't many Bob Foster's in the world. I'm just honored and forever indebted that I got to meet one of them. Bob, we love you guys and your legacy will last even when you're gone.

All my best,

Andy



Bob, Jennifer and their beautiful family

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,

Andy

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.

1

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.


2

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.


3

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.


4

PROBLEM: Rusty

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.

SOLUTION: Rusty

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.


5

PROBLEM: Family

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.


6

PROBLEM: Sports

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.


7

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.


CONCLUSION:

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!



Andy

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

Negatives:

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.

Positives:

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.

Negatives:

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!

Positives:

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.

Negatives:

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?

Positives:

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...

Negatives:

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!

Positives:

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."

Negatives:

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.

Positives:

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,

Andy