In this episode, we talk with Katie O’Grady, a 17-year old senior at North Rockland High School in New York. Katie is an avid runner and is a member of the Red Raider varsity cross country and track teams. She talks about the role sports and exercise have played in managing her CF, but particularly how beneficial running has been in keeping herself healthy. 

• Katie’s first sport was soccer. She played for five years, but eventually gravitated away from soccer and towards running.

• Katie began running early in grade school, running side-by-side with her father.

• For Katie, running provides her with an opportunity to think and take in the outdoors around her.

• By the eighth grade, Katie was her school’s best competitive runner.

• Katie says running has helped keep sinus infections at bay, while improving her breathing.

• Aside from running, Katie keeps herself in shape through weight training, swimming, and biking.

• When she does get sick, running can be frustrating for Katie, but she stays motivated by remembering the fun times at past events, and the support she has from her friends.

• In 2012, Katie crossed the finish line at the New York City Half Marathon, running for Team Boomer.

This CF Podcast is made possible through an unrestricted educational grant from GILEAD to the Boomer Esiason Foundation.

For more CF Podcasts, visit www.jerrycahill.com

In this episode, we talk with Bret and Brennan Hatfield, both of whom are brothers and enjoying high school in Omaha, Nebraska. Bret is 15, Brennan is 17, and both are living, breathing and succeeding with cystic fibrosis.

• Brett and Brennan were diagnosed with cystic fibrosis when they were four years old.

• They acknowledge the challenge that cystic fibrosis presents, but are determined to lead normal lives.

• For both, being compliant means setting up and sticking to a daily schedule for taking medications.

• Some of their favorite things to eat for breakfast include biscuits, pop tarts, bacon, and a chocolate protein shake.

• Both brothers like to run at least two miles on the treadmill and lift weights together. At times, they can get competitive with each other.

• Brennan says one of the toughest parts about having cystic fibrosis is the time treatments take away from his social life.

• Brett and Brennan both swim during the winter to stay active.

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

Diagnosed at the age of 10 with cystic fibrosis, Lisa Ropers is now a happily married 33-year-old living in Holmesville, Nebraska. Lisa, in spite of dealing with the CF complication Pancreatitis, remains passionate about the fashion and retail management world. She loves going to the gym, doing yoga, and shopping – especially in second hand stores where she can find things to restore or ‘up cycle.’ 

• Pancreatitis is caused by pancreas not functioning properly and symptoms include nausea and pain. 
• “I deal with my pancreatitis by watching my fat and protein intake and by living more of a vegan lifestyle and I avoid dairy,” states Lisa.
• “I usually have to go into the hospital a few times a year when the pain gets severe, and I go on some antibiotics and NPO (nothing by mouth) for 4 or 5 days,” according to Lisa 
• Lisa suggests that people with CF eat better and avoid a high fat diet to keep their pancreas healthy.
• “My family and husband are a great support system for me when I am getting a severe attack as they help with all my errands and just comforting me. Oh yes, my 2 dogs and 2 cats also add support…”
• Lisa’s advice to people with CF…  “Don’t ignore it, don’t be in denial, and take care of you!”

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

In this episode, we talk with Gunnar Esiason, a 21-year old senior at Boston College about the daily use of a feeding tube as part of CF treatment. While Gunnar continues to remain compliant and use the feeding tube, among other treatments, he has been living independently and has been enjoying college life for the past three years.

• Gunnar was diagnosed with CF at the age of two. He is now 21 years old and a senior at Boston College.

•  Gunnar made the decision to use the feeding tube during his sophomore year in college, shortly after enduring a serious lung infection and losing significant weight.

• The surgical process of inserting the tube culminated with the placement of a “button”, an external port allowing Gunnar to receive the nutrients he needs in liquid form.

• When the tube is initially put in, doctors gave Gunnar a “goal weight”, which is the ideal weight they would like to see him reach and maintain. Before the feeding tube Gunnar’s weight was at 142 pounds. Now, he is weighing 175 pounds. His goal is 185 pounds.

• During the day, the feeding tube provides Gunnar with anywhere from 500 to 1,500 calories. At night, Gunnar may ingest upwards of 2,000 calories and sometimes totals nearly 5,000 calories per day.

• Gunnar says the feeding tube hasn’t stopped him from leading a full life and enjoying college with his friends.

• Gunnar washes his feeding tube with warm or hot water in an effort to sterilize it.

• The only adjustment Gunnar says he has had to make is learning how to sleep at night while using the feeding tube.

Big thanks to Genentech for their support and for making this CF Podcast possible.

For more CF Podcasts, visit www.jerrycahill.com

In this episode, we talk with Lynne Sampson, Executive Director and CEO of the Pennsylvania-based non-profit HelpHOPELive. Lynne and her team at HelpHOPELive are passionate about providing assistance to transplant and catastrophic injury patients, helping to bring down the cost of medical expenses.

•    HelpHOPELive works to mobilize communities in their efforts to raise money for transplant and catastrophic injury patients around the country, thereby helping the patients cover the difference between what insurance can cover and what the family can pay.

•    HelpHOPELive teaches communities how to fundraise and encourages everyone in need of help to engage their communities early.

•    Last year, the organization oversaw 572 online events for patients

•    Through HelpHOPELive, communities raised $8 million in 2011

•    Sampson says many times communities want to help, but don’t know how to do it. 

•    Using HelpHOPELive, patients will be able to keep all funds raised as tax-deductible, meaning the funds will not count towards your income.

•    All funds raised through HelpHOPELive are secured by the organization’s financial team, providing donors a sense that their donations will be accounted for and used for their intended purposes.

•    Patients using HelpHOPELive also qualify for additional grants, including HelpHOPELive matching grants

For more on HelpHOPELive, visit www.helphopelive.org

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.

For 56 years, Jerry Cahill has courageously battled cystic fibrosis while awaiting a life-saving double-lung transplant.

In April 2012, Jerry got the call. A new pair of lungs had become available.

As a testament to his courage and dogged perseverance, Jerry crossed the finish line at the 2012 Boomer's Run to Breathe 10K - barely three months removed from his transplant surgery.

Now, for the first time since that surgery, Jerry opens up about life before and after receiving a new set of lungs.

July 21, 2012

Central Park
New York, NY

In its second year of existence, the Boomer's Run to Breathe 10K saw over 5,000 runners come out in support of the Boomer Esiason's fight against cystic fibrosis.

Among them, Jerry Cahill - a 56 year-old living, breathing and succeeding role model to the cystic fibrosis community. Barely three months after receiving a double-lung transplant, Jerry took to the pavement in Central Park and completed a challenging 10K.

Today, Jerry continues to inspire the CF community through his involvement in high school coaching,Team Boomer (www.esiason.org/teamboomer) and his newest initiative, You Cannot Fail (www.youcannotfail.com).

Follow Jerry through the CF Podcasts (www.jerrycahill.com), CF WindSprints (www.cfwindsprints.com), and via Twitter (@bigair).

“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.