Podcast 122: I Believe… in Exercise

The "I Believe" video series is a series of podcasts that features people in the CF community sharing their beliefs on what it takes to live, breathe, and succeed with CF.

In this episode, the discussion focuses on Belief in exercise and its importance to everyday health. While people with CF exercise and remain active in different ways, all four people featured in this video Believe that it strengthens and clears their lungs, and allows them to be strong both mentally and physically.

Thanks to AbbVie Inc. for the promotional support and commitment to the cystic fibrosis community, which makes this program possible.

Joe, now 33 years old, was diagnosed with CF at age 5, and also had a sister who was diagnosed with CF. He currently resides in Norfolk, Virginia with his fiancé Jennifer with whom he shares a love of riding motorcycles. Joe works as a Director of IT and enjoys practicing photography on the side. 

Joe Sleeper is LIVING BREATHING SUCCEEDING and determined that he WILL NOT FAIL…

• Joe has never defined himself by his cystic fibrosis.
• After heading a rebellious downward spiral in his teen years, he regrouped and took control of his CF after his sister passed away from the disease. “I had to regroup and take control of my life when my sister was gone. I was always sick with infections, my weight dropped to 118 pounds, and my PFTs were in the 20s… not a good thing,” stated Joe. 

• “I wanted to change… I did NOT want to be sick… the light bulb went on in my head and I took control. I went to Barnes & Noble and started looking at fitness magazines and started reading Muscle Magazine. I also started going to the gym and started lifting weights,” states Joe.
• Joe noticed he started gaining weight in a few weeks and after several months his PFT’s went up. “Over time I gained over 50 pounds and my PFT’s went from 20% to 58%.”
• Joe’s biggest challenge with CF is time management but he is confident that he will continue to “Breathe Easy” with his fiancée, Jennifer. – “My greatest support system along with my parents”.
• “Being disciplined with my CF treatments and my exercise is an investment I make so I can enjoy life” states Joe.
• Joe’s recommendations to young people with CF rebelling like he did: “CF today is a different game – It’s NOT a loosing game. You can and will live well past 30 years old. YOU are NORMAL and YOU are worth it!”
• What Joe wants people to know about him: “I am not a CF patient, I am just Joe, a guy that love riding motorcycles.” 

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

“A Day in the Life of a CF Mom/Caregiver: Catherine Hopkins”

Catherine Hopkins is facing the challenge of balancing a full-time job as a vet technician while making it possible for her 3 year old son, Philip to LIVE BREATHE SUCCEED with CF. Catherine and her husband, David, knew the diagnosis was a possibility just 8 weeks into the pregnancy and dove into research immediately. Since then, they have relied on their faith, friends, and family for support throughout their journey.  

• When Philip was diagnosed at 3 weeks old, they jumped into educating themselves about CF and therapies. Research and education are two of the most important things as a caregiver facing the challenges of CF.
• “We have been lucky,” Catherine states. In three years Philip has never been hospitalized or had any major scares. 
• At just 3 years old, Philip is brave in handling his therapies. “He’s my hero,” states Catherine. She is glad he was diagnosed young because it is all he knows. 
• Catherine is a CF mom, but she is also a normal mom who wants the same things all other moms want for their children. 
• Catherine and her family don’t think twice about the everyday responsibilities of a CF caregiver. “It’s just a part of our life,” states Catherine. 

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Bobby Bebber: Overcoming ALL Obstacles with CF

Bobby Bebber, 28 years old and living in Miami, Fla., was diagnosed with cystic fibrosis (CF) at age two. Bobby has had three liver transplants and a kidney transplant, and he also has CF-related diabetes, but he continues to fight on and NEVER give up. Bobby, who discusses overcoming all obstacles with CF, is LIVING BREATHING & SUCCEEDING. 

• Bobby grew up pretty fast. He was in the hospital a lot during his childhood, including for three liver transplants (October 1987, November1987 and May 2001).  Bobby’s mom donated a kidney to him.
• “My CF has mainly been digestive issues, but now the respiratory component has kicked in, and I am now listed for a double-lung transplant at Duke Medical Center,” Bobby says.
• Bobby loves sports and played soccer and intramural basketball in high school. He also is passionate about horse racing.  “My uncle owns a few race horses,” he says.
• “The hardest part about living with CF is not having the lung capacity to do what I like … Being on oxygen limits you,” Bobby says.
• Bobby’s biggest accomplishment was graduating college, because “I never thought I would do it,” he says.
• “My goal is to visit all 50 states and live to be 50 years old,” Bobby says.
• Bobby’s recommendation to others with CF: “Never give up. No matter what people tell you, be a fighter!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Rick Lerz is LIVING, BREATHING and SUCCEEDING after a double-lung transplant.

Forty-five-year-old Rick grew up Queens, N.Y., and was diagnosed with cystic fibrosis at six months. He now is married to his caring wife, Leigh, and the proud father of their 15-year-old daughter, Marty.

Rick, who has spent more than 20 years in the medical field, became a registered nurse in 1990. One of his hobbies includes breeding Sharpie dogs.

•    Growing up, Rick’s life was pretty normal and included exercise and bike riding. But his health started to go downhill when he was 26.

•    “I was listed in March of 2010, and I was blessed to have a very supportive family,” Rick says.

•    “The first thing I noticed post-transplant was that I could BREATHE… I could take a deep breath without coughing… it was truly amazing,” he says.

•    Post-transplant, Rick became the “can do” dad.  “I was able to take my daughter to the mall and walk around with her and shop. That is a great feeling,” Rick says.

•    Rick’s recommendation to people with CF who are thinking about a transplant: “Fight your depression, stay active, and have a strong support team you can talk to.”

•    “I have a new lease on life, and I am a productive, normal guy again. I am very thankful to my donor family,” Rick says.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

“The Power of Two” - A Story of Twin Sisters, Two Cultures and Two New Chances at Life

Marc Smolowitz, making his directorial debut, speaks about “The Power of Two” documentary film.

 “The Power of Two” offers an intimate portrayal of the bond between half–Japanese twin sisters, Anabel Stenzel and Isabel Stenzel Byrnes, their battle with the fatal genetic disease cystic fibrosis and the miraculous survival through double-lung transplants. 

• “Reading their book sealed the deal to make the film. Ana and Isa are great writers,” Marc says.
• Marc enjoys heath care storytelling that lends itself to bigger and more personal issues. “Seeing what patients go through with a chronic illness is very powerful,” Marc says.
• “Most people take breathing for granted, but it is amazing what people with CF go through just to breathe… I tried to focus a lot on breathing throughout the film,” he says.
• Marc’s trip to Japan with Ana and Isa was amazing. “Ana and Isa are cultural ambassadors.”
• “The Power of Two” engages the multiple communities: cystic fibrosis; transplant; and medical and health care. “Engage with us…”
• For more information on the film: www.thepoweroftwomovie.com.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Jennifer Champy was diagnosed with cystic fibrosis and Addison’s disease at the age of 28. At 38, the CF diagnosis was reversed.

In 2004, Jennifer graduated from nursing school at the top of her class and worked full-time as an emergency room nurse. Now 39, she lives in South Carolina and is "working disabled." She still has Addison's disease — a chronic endocrine disorder — and through the ups and downs, she is living, breathing and succeeding!

Twenty-five-year-old Jessica Link, who lives with CF, knows the importance of having your medical information organized and of advocating for yourself.

Jessica was born and raised in North Carolina and graduated with honors from the University of North Carolina with a degree in political science and psychology. She now works from home as a trader as well as part-time for a clothing retailer.

Jessica likes to keep up with American politics, bury her head in a good book, experiment in the kitchen, and shop.  Jessica is living - breathing - succeeding with CF every day!

    •    Jessica is an only child and was diagnosed at birth via meconium illeus.

    •    “Being organized with all your medical information makes you very independent, pro-active, and a collaborative patient, rather than reactive-passive,” Jessica says.

    •    Jessica stays organized with her health by using a “cheat sheet,” health notebook, Google Docs or a flash drive, pill strips, a hospital kit and a checklist.

    •    “It’s important to stay organized because it’s YOUR body and YOUR health, not your doctor’s. Being organized will minimize medical mistakes,” she emphasizes.

    •    Jessica blogs about life with CF (and other things…) at: http://breathsentence.blogpot.com

    •    Jennifer’s advice to others with CF: “Be compliant and get organized!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Megan Mollahan is a parent and caregiver to her 2 children with cystic fibrosis. Her daughter Maureen is currently 20 years old (diagnosed at age 8) and her son Jack currently 10 years old (diagnosed at 2 months of age) are currently living in New York.

Megan will discuss what it’s like to wear “many different hats” as parent, caregiver, friend, advocate, and on and on…

    •    When her daughter was initially diagnosed Megan leaned on her faith, family, friends, and doctors for support.

    •    Megan’s initial focus for her children with CF was “being diligent to treatments to keep them healthy and keeping a positive attitude”.

    •    “I try to stay pro-active in the CF community with CF Walks, school projects (working on SKYPE for her son to do with teachers when he is sick at home), and fundraising support from local businesses”, states Megan.

    •    “Everything I do for my children with CF is times two… so I try and simplify and make them independent with all treatments and medications. This becomes a juggling act at times but well worth the effort”, states Megan.

    •    Megan’s advice to other parents/caregivers: “be patient, open a dialog and communicate, have a support team, and it’s ok to take a day off…”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Dottie Lessard is a 44-year-old with cystic fibrosis (CF). She also is 16 years post- double-lung transplant, an athlete and life coach, a published author (“Seven Letters That Saved My Life”), and founder of Dottie’s Dream, a nonprofit organization. Most importantly, Dottie is the proud mother of her seven-year-old son, Liam. Dottie is LIVING BREATHING SUCCEEDING with a beautiful family!
With the help of today’s therapies, people with cystic fibrosis are now living longer and achieving more than ever before.

•    Dottie grew up in Massachusetts and was diagnosed at six weeks of age.

•    “I always admired athletes and the strength and endurance that they possess, and therefore exercise has become a passion of mine,” Dottie says.

•    Dottie started playing basketball at an early age, but as she got sicker, she always found a way to exercise - even if it was only five minutes every day. “Exercise empowers me,” she says.

•    “I was listed for a double lung transplant in 1992 and stayed motivated by thinking of all the great things I would do post transplant – that kept me going.”

•    “Pre-transplant, I was in the hospital a lot and watched life happen outside … I became friends with the nurses and learned about their lives,” Dottie says.

•    Post-transplant, Dottie continued to focus on being an athlete and started competing in the Transplant Games in 1996.  Dottie currently trains 45 to 60 minutes every day.

•    “I continue to be motivated today because of my wonderful son, Liam. I am thankful that I have been blessed with a new life with my lung transplant,” she says.

•    Dottie’s words of wisdom for people with CF…
- Believe!
- Find a balance.
- Stay positive.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
For more information about cystic fibrosis or the Boomer Esiason Foundation, be sure to visit our website at www.esiason.org.