54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis

<>

Today, you will meet Stephen Bell, a 30 year old with cystic fibrosis, who is an avid runner and exercise enthusiast. Stephen has run 8 marathons in the last 5 ½ years, and attributes his health to his commitment to staying active. Running – something that was once used as a punishment in other sports – has become something that makes him feel free, and gives him time away from everything when he is feeling overwhelmed.

This video podcast/vodcast was made possible through the promotional support and commitment from AbbVie to the CF community.

Direct download: Giving_Back_to_the_CF_Community_through_Exercise_Awareness.m4v
Category:general -- posted at: 4:23pm EDT

In this video, Jerry discusses several methods of airway clearance that help people with cystic fibrosis avoid lung infections. Jerry finds the following methods extremely helpful in keeping his lungs clear: the vest, the flutter, the power lung, sinus irrigation, the percussor, and last, but certainly not least, staying active and exercising regularly.

This podcast has been made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: Clear_the_Airways.mp4
Category:general -- posted at: 3:43pm EDT

In July 2013, runners gathered for the third consecutive year for a race Central Park in New York City. Many of those runners were there to support the cystic fibrosis community, and they shared with us their many reasons for running. From lung health to stress relief, emotional well-being to freedom from their disease, all of these people have at least one thing in common: they run to fight cystic fibrosis.

This podcast has been made possible through an unrestricted educational grant from VERTEX to the Boomer Esiason Foundation.

Direct download: Run_To_Breathe_2013_Why_do_you_run.mp4
Category:general -- posted at: 11:53am EDT

I Believe… in Compliance 

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 cystic fibrosis. 

In this podcast, four people who are at different stages in their fight against CF share what the word "compliance" means to them and to their health. The common belief in this video is that compliance prolongs the life of anyone living with cystic fibrosis. 

This podcast was made possible by a patient education grant from Novartis Pharmaceuticals Corporation.

Direct download: I_Believe_Compliance.m4v
Category:Vidcast -- posted at: 11:30am EDT

I Believe 

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 cystic fibrosis. 

In this podcast, four people with CF discuss the need to have a supportive community surrounding you. All people with CF feel some sort of isolation and low points throughout their lives, but those times teach you resiliency and personal discipline. The panelists in this podcast swear by movies, music, exercise, remembering to have hope, and even having a therapeutic cry as ways to overcome difficult times. 

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

Direct download: I_Believe.m4v
Category:Vidcast -- posted at: 10:31am EDT

Exercising with CF 

“If it’s not important, breathe it out. What’s important, breathe it in.”

In this video, Emily Schaller, a 31-year old living, breathing, and succeeding with cystic fibrosis shares her life-changing relationship with exercise and her determination to spread awareness about CF. Active in her youth and teenage years, Emily did not commit herself to making an entire lifestyle change until her lung function began to decrease in her early 20s. Since making that commitment, her health and overall lifestyle have improved dramatically.

This video was made possible through an unrestricted educational grant from Pharmaxis.

Direct download: EmilySchallerExercise.mp4
Category:Vidcast -- posted at: 10:25am EDT

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.

Direct download: BelieveinExercise.mp4
Category:podcasts -- posted at: 10:25am EDT

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

Direct download: KatieOGrady.m4v
Category:general -- posted at: 9:00am EDT

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.

Direct download: RIM_130101_VIDEO_HATFIELD.m4v
Category:general -- posted at: 12:25pm EDT

Episode #0119: “Living with Pancreatitis and CF” – Lisa Ropers

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.

Direct download: 01_Lisa_Ropers.mp3
Category:general -- posted at: 3:46pm EDT

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

Direct download: CF_Podcast_Gunnar_Feeding_Tube.m4v
Category:general -- posted at: 10:05am EDT

Creative Commons License
This work is licensed under a Creative Commons Attribution-NoDerivs 2.5 License.