People with CF who are LIVING, BREATHING and SUCCEEDING at 50+ have beaten the odds!
This may be a time to look for less stressful alternatives in their careers and to take better care of themselves—enjoying more “me” time. They may be motivated by exercising and by complying with medical regimens to live a fuller, healthier life. It is about priorities and knowing one’s limits.
These people are in the process of thinking about the next part of their life … maybe disability and then giving back to the CF community by volunteering.
If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.
"Be a force for good."
I was not diagnosed with cystic fibrosis until September 1990 when I was thirty-four years old. I had many symptoms growing up – like stomach aches and constant colds – but my doctors never thought it could be anything serious. My cousin eventually had a child who was diagnosed with CF, which led to my own testing and diagnosis.
In spite of CF, I have always led a fulfilling and happy life. My wife and I travel as much as possible – and are always looking for something new to experience. I stay active by golfing, skiing, doing yard work, fishing, carpentry, and landscaping.
The main thing I want to accomplish in my lifetime is to help people create their own happiness. I think that I have been put on this earth to lead by example and to show people that they can have fulfilling, exciting lives. I recently started imagining and creating a program that will assist families in need by sending them to great wilderness camps and other locations that provide positive family vacation experiences. Again, I just want to help people – it is what gets me up in the morning.
Favorite color – red.
Favorite food – Mexican
Favorite holiday – Christmas
Favorite movies – anything with John Wayne and True Grit
If I could visit anywhere in the world, I would go to South Africa.
My friends and family would describe me as happy.
‘Four wheels to move the body, two wheels to stir the soul.”
I was diagnosed at birth with cystic fibrosis – six months after my parents lost my older brother to the same disease. In spite, and because of, this tragedy, my parents moved forward, becoming some of the first people to raise funds and awareness about cystic fibrosis.
As a child, I remember my mother being overly protective, while my father encouraged me to live a normal life and to never slow down – a combination of lessons that made me who I am today. In my youth, I have to admit, I was not completely compliant with the treatments available to me. I played baseball, which helped my health, but I also lived in a state of denial about my disease. While my neighbors and friends expected me to pass on at the age of 12 – the same age as my brother – I simply lived my life as normally as possible and ignored the negativity that surrounded me.
When I was old enough, I decided to apply for an out of state policy academy and not disclose any information about my disease. With an iron will, I was able to pass the physical, at which point I began my career on the police force, where I have served as a patrol officer, a narcotics detective, a criminal investigator, and, my true passion, as a motorcycle cop. Being on a motorcycle allows me to escape from my reality for a time and to feel true freedom from cystic fibrosis.
The most important thing in my life beyond riding motorcycles is my family, my two daughters who, I am proud to say, are both in police enforcement. Because of cystic fibrosis, I have closely bonded with them both, trying to fit in every and any father-daughter experiences possible – using my time as wisely as I can. My greatest achievement is being a parent – it is the hardest job and the most rewarding.
I have cystic fibrosis, and, while I try to remain medically and physically compliant, I will always live my life doing the things that matter most – loving my daughters and riding motorcycles, feeling freedom.
My favorite hobbies, other than riding, are… martial arts and hand gun shooting.
My favorite song is… The Wind Beneath my Wings by Bette Midler because it reminds me of my daughters.
My favorite color is… blue.
My favorite food is… pizza.
My favorite holiday is… Christmas.
My favorite movies are… The Harry Potter series.
If I could visit anywhere in the world, I would… visit Paris.
My daughter tells me I am… driven (but actually uses the word crazy).
To anyone with cystic fibrosis… Be compliant with your treatments because it will cost you years trying to play catch up.
“Think like a child would – they never take no for an answer.”
I spent most of my youth denying the fact that I had cystic fibrosis – to myself and to everyone around me. I was diagnosed at the age of nine, given a life expectancy of 18, and acted defiantly ignored the medical recommendations given to me. I hated coughing in front of classmates and friends and worked hard to ignore my disease while trying to fit in with all of the “normal” kids.
As I grew and matured, I came to the realization that my disease, my challenges were what would make me unique and give me strength. I began to appreciate my life and became relentlessly stubborn about letting nothing stand in my way of living my life the way I wanted.
I have been medically compliant and constantly active for years. I always tell people that exercise saved my life. I run 3 ½ miles every day, lift weights, play tennis, and do all of my treatments and take my medications regularly. I have found that setting goals – both big and small – has enabled me to stay competitive and constantly challenge myself. My biggest goal is to share my story and inspire people to become the best that they can be. In spite of, or more accurately, because of my disease, I have been able to write a book and start my own skin care business – both business ventures that I went into knowing that I would not take no for an answer.
I am blessed to have a supportive husband, loving family, and a wonderful CF clinic and doctors who listen to my concerns and guide me through all of the difficult issues of CF. I encourage everyone to live by my favorite line from my favorite movie, The Shawshank Redemption, “Gey busy living or get busy dying.”
I enjoy… golfing, cooking, and taking road trips with my husband.
Holiday: 4th of July
Movie: Shawshank Redemption
Musical Group: Eagles
Athlete: Ernie Els
If I could give someone recently diagnosed with CF any advice, it would be… Stay vigilant. Stay active. Stay busy. Focus on positive goals. Most importantly, exercise!
“I have lived well, have been blessed to be able to travel the world, and have lived to enjoy my family. I am content with where my life has taken me.”
My name is Valerie Batz and I have cystic fibrosis. I was born in 1959 in New Hampshire and was diagnosed with CF at 22 months old. The doctors told my parents that I would most likely never live to attend elementary school. In spite of this news, my parents did not treat me differently. My older brother had already been diagnosed with CF, so they had already developed a routine. In my house, we treated our medications and treatments as though they were habit – similar to taking your vitamins daily. Beyond remaining medically compliant, I also stayed active by being a member of the cheer squad and sailing, skiing, and swimming with my family. Eventually I was able to pass my lifeguard class even though my doctor told me that I would not be able. Aside from coughing and the occasional stomach ache, I led a normal childhood.
After graduating high school, I attended the University of Illinois as an international business major where I learned to speak both French and Spanish and was fortunate enough to study abroad in Paris. CF never held me back from my dreams.
I have been married to my wonderful husband, Jay, for 24 years and we have twin sons in their 20s, neither of whom have CF. My children changed my goals completely – I once dreamed of traveling the world but now just want to live long enough to see my children get married and meet my grandchildren.
When I turned 40, my health took a turn for the worse and I had to quit working. I had 30% lung function, weighed less than 100 pounds, was on full time oxygen, and had to have a feeding tube. I was able to get on the transplant list and am thankful every day that the doctors were able to find a match for me. Life post-transplant has truly been a blessing. I no longer cough and have two beautiful new lungs. I now enjoy sharing my optimism by guest speaking and promoting organ donation. I have lived well and am happy to be sharing my story and my life with others.
Favorite holiday: Transplant anniversary (Rebirth Day!)
Favorite food: Italian
Favorite past time: Reading
Favorite color: Burgundy
One word to describe you: Spirited
Hobbies: Love to sew and cook
I was born in Westchester, Tennessee in the spring of 1951. As a child, I had trouble gaining weight and was often in poor health – fighting off bouts of pneumonia. It was not until 1963, at the age of 12, when I received a sweat test at Vanderbilt University Hospital in Nashville and was diagnosed with cystic fibrosis. My parents’ decision to let me play sports growing up kept my lungs healthy and promoted airway clearance. While attending undergraduate school at Rice University, I remained active by participating in intramural sports, such as flag football and basketball.
While attending medical school at Baylor College of Medicine in Houston, Texas to become a lung pathologist, I was fortunate to have access to both the most up-to-date treatment modalities and the opportunities for early intervention when problems arose. Now, at 58 years old, I continue my research as a lung pathologist and professor at Duke University Medical Center in Durham, North Carolina. I stay compliant with my medications but of struggle to find time to exercise. With the support of my wife, daughter, and two stepsons, I hope to get back to some of the activities I enjoyed in my youth.
Since I turned 50, I look at each day, week, month, and year as a gift, and it is my practice to live with an attitude of gratitude. I have also found that sharing my story with CF families or the freshman medical class at Duke is not enough. I have written a book, “So Far, So Good: Living and Coping with Cystic Fibrosis,” that is unpublished and still needs editing. My goal is to complete and publish the book, and give all of the proceeds to CF research. I am proud to say that I have not let CF stand in the way of my dreams, and I am continuously thankful for the gifts that each day brings.
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