July 2009

Victor Roggli

“Never give up.”

I was born in Winchester, Tenn., 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, when I was 12 years old, that 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 in shape 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.

Attending medical school at Baylor College of Medicine in Houston, Texas, to become a lung pathologist, I was fortunate to have access both to the most up-to-date treatment modalities and 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, N.C. I am staying compliant with my medications but struggling 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 school class at Duke is not enough. I have written a book called “So Far, So Good: Living and Coping with Cystic Fibrosis” that is unpublished and still needs editing.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 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.   

Favorite Holiday: Halloween
Favorite Food: Butterscotch frozen yogurt
Favorite Pastime: Karaoke (I love singing, and it helps clear my airways)
Favorite Color: Periwinkle blue
Role Model: My teacher from Baylor named Don Greenberg — he was a world famous lung pathologist
Dream Vacation: Hawaii
You can find Victor on … Jerry Cahill’s podcasts (www.jerrycahill.com)

Paul Drury

“Live in the now.”

Born in Chesire, Conn., with five older brothers and sisters, I was diagnosed with CF at the age of two. Growing up, I had a normal, active childhood with the “usual” cleanouts — playing sports like baseball, golf and hockey in high school. When I began attending the University of Connecticut in the late 1980s, I found adjusting to college life very difficult. I was very private about having cystic fibrosis and avoided telling my friends, so as not to be treated differently.

During my first semester at school, I got pneumonia. My lung collapsed three times during my second semester, resulting in one of my lungs being glued to the inside of my chest in an attempt to prevent a future collapse. However, my other lung collapsed, forcing me to miss a full year of school at UConn and to return home.

Although it was a struggle, spending the year at home turned out to be a blessing in disguise. In November, my dad passed away after a heart attack. That spring and fall with him at home, watching the Red Sox go to the World Series, provided me with memories that I still cherish.

After I graduated from UConn with a degree in economics, my condition worsened, causing me to receive a double-lung transplant.  Following my transplant, I created a marathon golf event as a volunteer for the Cystic Fibrosis Foundation. In 1996, I was put on the CFF staff and have since become the Director of Special Projects and the Executive Director of the Connecticut chapter.  Now, at the age of 43, I have learned that living with CF has given me a unique perspective on life, one that has taught me to live in the moment and never lose hope.

I currently live in Plantsville, Conn., with my wife and two dogs — taking one day at a time and always maintaining a positive outlook on life.

Favorite Holiday: Thanksgiving
Favorite Food: Chicken
Favorite Pastime: Painting (pointillism is my specialty!) and the Boston Red Sox
One Word that Describes You: Witty
Role Model: My mom
Dream Vacation: Alaska (I traveled there with Boomer!)
A Fun Fact about Paul: My wife, Ivona, bought me at a CF bachelor bid in 1998.  We have been together ever since.
You can find Paul on … Facebook

July 2009

Cris Dopher

“Keep moving forward.”

At four years old, I was diagnosed with cystic fibrosis. With my boyish good looks and Southern California residency, I was chosen to be the poster child for the San Diego chapter of the Cystic Fibrosis Foundation. My face was put on CF posters and distributed throughout the Foundation and the greater CF community. Before I entered the sixth grade, my dad moved our family to Missouri, where I first learned the importance of exercising from CF doctors at the University of Missouri - Columbia Hospital.

Unable to play sports during my first years of high school after a farming accident crushed my ankle, I found a passion in theater. Soon I was designing sets as well as acting in my high school plays. After graduating from college, I attended graduate school at NYU and received my master’s in fine arts.

In the years following graduate school, I began to notice a progression in the severity of my disease. Last March, when I was 36 years old, I struggled with another exacerbation. Climbing a flight of stairs left me breathless, and I began to fear the worst. It was not until after the IVs started to work and I began exercising every day that I became stronger — both mentally and physically.

Even though it still remains a challenge to take the appropriate amount of enzymes every day, and eat as my doctors instruct, I am much more compliant now and rarely miss my treatments. There also is a greater need for me to maintain my health due to CF-related diabetes. I believe that the importance of compliance is the equivalent of how much belief you have in yourself and in your future.

I spend my free time volunteering and fund raising for the Boomer Esiason Foundation, which includes running for Team Boomer once a year. Making my own contributions to BEF allows me to give back and stay connected to the greater Cystic Fibrosis community. All in all, I keep moving forward — in my work, in my relationships and most importantly, in my healthcare

Favorite Holiday: Thanksgiving
Favorite Food: Sushi
Role Model: I admire my dad and the Jewish actor Zero Mostel, both for their resilience
Dream Vacation: An around-the-world motorcycle tour
Fun Fact About Cris: I rode my Harley to Alaska
You can find Cris on ... Facebook, running blog www.myteamboomer.com/profile/CrisDopher

Jennifer Alawadi

“You come to love not by finding the perfect person, but by seeing an imperfect person, perfectly.” (Sam Keen)

I first met my husband, Mohammad, over the Internet in 2003. We spent long hours chatting, both over the phone and online, and after three short months, I made a trip to Chicago to meet his family. In him I found a very wonderful person who, despite his ill health, inspired me in ways I never thought possible. Shortly after my visit, we married. It was then, when I became Mohammad’s wife, that I realized the great responsibility of his illness and joined him in his fight against cystic fibrosis. 

With our CF center two hours away from our home in St. Petersburg, Fla., and Mohammad bed-ridden and unable to work, the everyday fight still proves to be difficult. Struggling to pay the bills and make rent, I am constantly juggling the roles of caretaker and homemaker. I have to be a shoulder to cry on, a cheerleader when Mohammad has an infection, an advocate among doctors, a housekeeper, nurse, and most importantly, a wife.

Now that Mohammad is 42, there is a greater need for him to stay compliant. Every morning I wake him up early and help him with his treatments and airway clearance. However exhausting the daily treatments are, I am thankful for the hours it gives us together. Mohammad has an extra spark for life — making every minute I spend with him a reward in itself. My goal each day is to do whatever I can to make my husband feel comfortable and continue breathing — with the hope that he will receive a lung transplant and more freedom in the future.

There is a great love and respect that we share for each other, and most importantly, there is hope. Hope that Mohammad will receive a double lung transplant; hope that we will get through the next day or the next week.  But most importantly, I am grateful that my husband is still alive and never losing hope. 

Favorite Holiday: Halloween
Favorite Movie: Ever After
Favorite Color: Teal
One Word that Describes You: Chipper
Role Model: My mother
Nickname: Mon Mon — short for Monia, which is Arabic for heart’s wish
You can find Jennifer on ... Facebook