Michael is 24 years old with CF and 5 months post double lung transplant. Michael is from Nebraska, and loves fishing, hunting, exercising, and EMS. Michael also loves the outdoors and helping people. He was diagnosed at 4 months old and has a younger sister who is 20 years old, without CF.
Michael never let’s his CF stop him from doing the things he enjoys
In 2001 Mike began to understand the severity to his CF, due to a collapsed lung.
Michael believes that with a life threatening disease “feel lonely at times” is typical, so you need an outlet like exercise to feel better.
Michael states“Post transplant, is the best I have felt. Ever… I can finally breathe and have a great outlook on life” and he is extremely thankful to the donor.
Michael believes “if he keeps working hard and exercising he can keep his new lungs healthy and have a great quality of life” Life with a life threatening disease is “difficult”
Michael is happy to wake up every morning and enjoy life and thankful to his donor and family everyday
This educational podcast was made possible through an unrestricted educational grant from Allergan to the Boomer Esiason Foundation.
Adriane is married with 3 children, and currently resides in North Carolina. She and her husband are the happy parents of 3 children. Alexis 7, Andrew 4.5, with CF, and Olivia who passed away 6 years ago from a rare heart disease. She currently enjoys running, biking, and hiking with her family. She also enjoys writing, listening to music and working out at the gym. She believes it is important to have inner strength and always be positive.
Adriane and her husband, Peter, believed that they needed to “buckle down” and get ready for another battle when they found out their son, Andrew, was diagnosed with CF.
She relied a lot on close friends and family. They also reached out to other parents who have children with CF.
She focused on one thought: “How can I raise my child while he will be dealing with a chronic illness everyday”
Andrew started to question his CF when he was 2.5-3 years old.
Andrew’s treatments are “Non-Negotiable”
He has begun teaching his peers about his CF and his treatments. He is a 3 year old CF Advocate
To learn more about Adriane and the ways she manages her mental well being, please listen to her podcast.
This educational podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.
In this podcast we meet Will Schlucter, a 26 year-old CF patient who owns his own gym, Will Power Strength and Conditioning. After years during his youth of taking breaks during athletics, Will decided, as an adult, to push through his coughing, expand his limits, and leave his comfort zone while working out - which led to a love of training himself and other people.
This video podcast/vodcast was made possible through an unrestricted educational grant from Novartis to the Boomer Esiason Foundation.
Today, you will meet Brayden Merrill, a 14-year-old with cystic fibrosis who stays healthy by playing soccer, track, and cross country. For someone so young, he is very open about his disease and uses it as a reason to train harder – uses it to his advantage as a motivation. His younger brother Noah (8) also has CF, and Brayden does everything he can to be a good role model and to teach him how to stay healthy.
This video podcast/vodcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Today, we meet Sabrina Walker who is 30 years old living, breathing, and succeeding with cystic fibrosis in Anchorage, Alaska. Growing up, her parents encouraged her to stay active and play sports – not allowing her to make excuses about why CF would stop her. Sabrina’s mom is the person who sparked her love of running in order to keep her lungs clear. Not only does Sabrina battle CF on a day-to-day basis, she is also a cancer survivor, wife, and mother who keeps a positive attitude through it all.
This video podcast/vodcast was made possible through an educational grant from Gilead to the Boomer Esiason Foundation.
20 years old with CF, athletic, attending college, and from Tennesse
Hobbies include soccer (plays on varsity team), hiking, cross-stitching
Watching Buffy & Vampire Slayer with friends and Callie is a huge Sporting Clays fan
Callie believes that we all need to “jump the fear” with CF.you never know what’s going to happen in life… big fear of the unknown things just happen so ENJOY!
Family “24 hour rule” get over things in life and move forward…
Callie and her family believe you should not get stuck in CF.
CF opens doors!
Callie loves life and always finds joy in life
Callie’s advice… “We all need people in life, we cannot do on our own
This podcast was made possible from an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
In this podcast, we hear from Jerry’s CF medical team about his journey with CF and life post-transplant. They share how they work as a team to make patients with CF feel cared for and supported. For Jerry, because of the extensive amount of time he spends with them, his doctors and nurses at Columbia University Medical Center have become like extended family – a group of caring individuals who tirelessly work to make sure he has a long, successful life.
This video podcast/vodcast was made possible through an unrestricted educational grant made from Gilead to the Boomer Esiason Foundation.
In this podcast, we meet some of “Jerry’s kids” – the young athletes he dedicates a great deal of his time to coaching in the sport of pole vault. Just as in his professional life, Jerry runs a tight ship… something his kids would heartily confirm. And it is that passion and dedication that inspires these athletes to work harder and longer than anyone else on the track. In turn, that hard work continues to inspire Jerry in his own life living with cystic fibrosis.
This video podcast/vodcast was made possible through an unrestricted educational grant from Allergan to the Boomer Esiason Foundation.
In this podcast, Mary Cahill – mother to Jerry Cahill – sits down to discuss what it was like raising a CF child among her other “normal” children. She shares the story of his diagnosis and the subsequent decision that she and her husband made to treat Jerry the exact same as his siblings – encouraging him to play sports and get out and be as active as possible. This decision led Jerry to live an active, healthy, and successful life, enabling him to get to where he is today.
This educational video podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Gunnar Esiason sat down with BEF CF Ambassador Jerry Cahill recently to find out more about his double lung transplant and the way his life has changed since he had the procedure 4 years ago. Jerry shares the many ways in which he has traded certain CF issues for complications that come along with any transplanted organs – and also reminds us that a transplant is not a cure; that he still has cystic fibrosis.
This video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.
In this podcast, we hear from 24-year-old, Gunnar Esiason. He discusses how important it is for people with cystic fibrosis to remain compliant – with their medications, treatments, nutrition, and exercise. Gunnar also points out that airway clearance is one of the most important things he does to stay healthy and – outside of using a vest, percussor, and exercising – that he uses a machine called a frequencer. Check out the video to learn more!
This video podcast/vodcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
To Sydney Esiason, there is no bigger duty of a sibling than to be the other’s biggest fan and supporter. While Gunnar has been in the spotlight for the majority of his life because of cystic fibrosis, Sydney has been there right beside him, cheering him on – quite literally. The duo attended the same schools all the way through Boston College. Tune in to hear Sydney tell her story of growing up as a sister to someone with cystic fibrosis.
This podcast was made possible through an unrestricted educational grant from Novartis to the Boomer Esiason Foundation.
CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann
Today we meet Jen Eisenmann, a 44-year-old living, breathing, and succeeding with cystic fibrosis. Diagnosed at 12 months old, Jen grew up similarly to most other kids, other than having to take enzymes and do occasional chest percussions. Because her parents had never heard of cystic fibrosis, they were wary of her participation in athletics, and so directed her in the direction of music as an extracurricular activity.
* At 22 years old, Jen visited a CF clinic for the first time.
* She had, admittedly, been naïve about the seriousness of CF and the need to care for herself.
* Her new doctors told her she had to change her ways to survive.
Listen in to the latest CF podcast to hear Jen’s entire story.
This CF Podcast was made possible through an unrestricted, education grant from Genentech to the Boomer Esiason Foundation.
CF Podcast 151: Self Management and Pursuing Goals with Cystic Fibrosis
Today we meet Jessie Ennis, a 22 year old with CF who was born and raised in Dublin, Ireland. Because of a family history of the disease, Jessie's parents had her tested for CF before she was six weeks of age. In spite of CF, she had a relatively normal childhood - growing up with her brother and a series of foster kids - and remained healthy through high school.
Now Jessie:
studies health and society in college,
is currently visiting and working a summer job in San Diego,
and has taken up surfing and skiing.
To learn more about Jessie and the ways she manages her disease while pursuing her goals, please listen to her podcast here [insert link].
This educational podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
The fourth episode of the Own Your Feeding Tube video podcast series discusses some of the social questions that tube feeders, or potential tube feeders, may have when it comes to a new feeding tube. Obviously, it’s a pretty noticeable device. I think the social hurdle was really the biggest one that I had to overcome. With that being said, once I realized the benefits of the feeding tube, especially in my life, it was an easy hurdle to get passed. Here, the message is that I really want you to own it. What is it? The feeding tube. If the feeding helping make your life easier, then don’t worry about what it looks like. You never know where it will lead you.
CF Podcast 150: Sean Sullivan, Being Compliant with Cystic Fibrosis
Today we meet 40 year old, Sean Sullivan, who was diagnosed with CF at 16 months after his parents grew concerned about his chronic cough and lack of weight gain. Sean is the oldest of six kids and is the only person in his family who has CF.
ïHe grew up extremely active – playing basketball, baseball, and swimming.
ïHis doctors encouraged his parents to treat him the same as their other children.
ïFrom a young age, he learned to be not only medically compliant but also stick to an active lifestyle.
ïNow 6 months post transplant, Sean is even more vigilant than ever while taking care of his disease and its new challenges.
This podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.
The second episode of the Own Your Feeding Tube video podcast series will show you how I have had to make a few lifestyle changes after I had my feeding tube placed.
I agree, it can seem like a lot of work and even a little scary at first, but I can honestly tell you that living a full, healthy life with both CF and feeding tube can be done. Here, you will see what I have done to overcome any challenges that a feeding tube may present.
This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Services.
“Normalcy with a Feeding Tube”
In the third episode of the Own Your Feeding Tube video podcast series, you will see how I have been able to maintain my physically active lifestyle. Prior to getting my feeding tube placed, I had a fear that my life would change drastically. It did, but for the better. My health drastically improved, plus I saw my energy and activity level sky rocket. I was in the gym and on the ice only 6 weeks after surgery. While the feeding tube does require a little extra work outside of the realm of normal cystic fibrosis responsibilities, I am more than willing to give a little hard work for such incredible gains.
This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.
CF Podcast 149: Exercising with Cystic Fibrosis featuring Jillian McNulty
Today, we meet Jillian McNulty, a 38 year old woman living, breathing, and succeeding with cystic fibrosis in Ireland. Growing up as one of four kids, she is outgoing and constantly challenges herself to stay on top of her disease.
- During her childhood, Jillian was never hospitalized for an extended length of time.
- In her early thirties, Jillian's health started to decline, and so she made the decision to push herself with exercise.
- After seeing an ad for a marathon while she is in the hospital, Jillian decided to sign up and start training.
- Since then, she continues to push herself by running, walking, and cycling on a regular basis and by competing in races.
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Today, we meet Chris Peacock, a 26 year old native of Durham, UK who loves sports, poker, and spending time with his girlfriend and friends.
- Chris suffered a collapsed lung in 2011.
- He stepped out of his comfort zone and started dedicating time to exercise and now walks/runs 2 miles every day.
- Because of his health issues, he is on home oxygen. But after starting his exercise regime, he only uses it at night and hopes that one day, with continued fitness, he will not need it at all.
- Chris says that his friends generally don't treat him any differently, but don't fully grasp how serious his disease is because he never lets it slow him down.
This CF podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
In the first episode of the Own Your Feeding Tube video podcast series, this “How-To” video will show how I am able to use my feeding tube in different situations. I cover two different types of “feeds,” bolus feeds and nocturnal pump feeds. Bolus feeds are quick and easy and can get me as much as 750 calories in just a few minutes. My nocturnal feeds typically run for about 7 hours and give me anywhere from 1500-2500 calories depending on how much formula I use.
I also discuss how the feeding tube system is undergoing a change to the ENfit connector system. The current ENfit transitional set has been introduced and has created many questions for tube feeders. In 2016, feeding tubes and their accompanying pieces will complete the total transition to the ENfit connector system, which is designed to improve patient safety. Hopefully this video can help answer some of those questions.
This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.
Meet Tim Wotton, 44 years old, with CF. Tim is from London, U.K. He was an international junior field hockey player, works full time as a business consultant, and continues to play hockey and visit the gym regularly.
Tim is a loving husband, father, and has two brothers, one of which is a twin. Tim is loving life with his family and proving everyday that he is OWNING IT!
Tim discusses CF and starting a family through in vitro fertilization.
It took Tim and his wife 6 IVF cycles to have their son Felix.
Tim’s son’s name Felix is Latin for lucky and Greek for happy.
Tim see’s all of his “tomorrows” in Felix
Tim has his own blog and book titled ‘How Have I Cheated Death?”
Tim’s Quote: “Everyone needs to row their own boat, with CF”
In this CF Podcast, we meet Bryan Warnecke – the young man with cystic fibrosis who was featured in the One Republic I Lived music video. He OWNS his disease every day by staying compliant and exercising. Active in various athletics, he is extremely passionate about ice hockey – a sport in which his team has won a state championship. Bryan’s goal is to become the first goalie with cystic fibrosis to play in the Olympics for Team USA.
This video podcast/vodcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.
In this podcast you’ll see how I have taken to the coaching word, despite dealing with cystic fibrosis. Growing up, I was lucky enough to have some great coaches along the way. They always knew how far they could push me – just beyond the breaking point. I owe a lot of my character and success in life to my mentors, especially my coaches. They taught me invaluable life lessons away from sports that I one-day hope to pass on to my athletes. Success is something that is attainable for everyone, but not without hard work.
This video podcast/vodcast was made possible through an unrestricted, education grant to the Boomer Esiason Foundation from Chiesi.
“Exercising with CF Pre & Post Transplant” – Lar Brennan
Lar Brennan, 30 years old post transplant with CF, born and raised in Wexford, Ireland and was diagnosed at 9 months of age. Lar is an athlete, sports enthusiast, and passionate about fitness. Lar received a double lung transplant on November 24th 2013.
Lar studied fitness in college and is now a fitness instructor. Since his transplant Lar does everything he can to raise awareness and empower people with CF to excel in everyday life. Lar is RELENTLESS in his quest to stay fit and beat CF. Lar believes that through the “power of exercise” he cannot fail…
Lar states: “you need to stay positive and believe in yourself”
Lar’s quote: “Smile and wave…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Meet Tim Sweeney, a 37-year-old personal trainer living, breathing, and succeeding with cystic fibrosis. Tim, who ran the NYC Marathon one year after his double lung transplant, and his wife Beth have had two children – Timmy and Harrison – using IVF. While there are not many resources for CF couples going through IVF, the Sweeneys want other people going through the same process to know that it can and does work; that people living with CF can successfully start a family.
his video podcast/vodcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
Meet Colin (11) and Sean (9) Randles – brothers who are living, breathing, and succeeding with cystic fibrosis. The brothers are active in sports, including baseball and basketball, and are constantly playing games like cops and robbers and tag outside with friends.
They both agree that the best part of having a brother with CF is that they are always there to encourage each other, to hang out in the hospital, and to help each other get better.
This video podcast/vodcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
Wise words given to CF mom, Whitney Randles, from her boys’ grandfather: “Special children are only given to special people.”
Pat Randle: “My biggest fear is that I outlive my children – simple as that; that shouldn’t be. And I don’t want that to happen. That’s where it begins and ends with the fear. I don’t want that to happen.”
* * *
In this podcast, CF parents Pat and Whitney Randles, discuss the challenges they have faced while raising two young sons with cystic fibrosis. While most parents face the normal ups and downs of learning to raise kids, the Randles had additional challenges when they were told that they oldest son, Colin (now 11), had CF. When their second son, Sean (now 9), was born with CF – they faced an additional set of trials, balancing schedules and medications, among other things.
The Randles are constantly learning the best way to raise their kids. They depend on one main phrase every day: “Do CF life first, then do your normal life.” By constantly challenging their boys to stay compliant and healthy, they are instilling skills both Colin and Sean will hold onto into the future.
This CF video podcast was made possible through an unrestricted education grant from Genentech to the Boomer Esiason Foundation.
Gunnar Esiason, 23 years old and living with cystic fibrosis, graduated from Boston College in May 2013. Originally planning to attend law school, he realized that he had driven himself into the ground during undergrad – forcing him to alter his plans.
Returning home to live with his parents, Gunnar decided to look into coaching high school football and hockey. After learning of an opening at his alma mater, he started work and immediately fell in love with the job and watching kids learn and succeed.
Today, Gunnar has found a balance that allows him to put his health and compliancy first while enjoying this new post-college, career phase of his life.
This video podcast/vodcast was made possible through an unrestricted education grant from Chiesi.
Direct download: undefined.
Category:general
-- posted at: 10:00am EDT
Lizz Kaup, 34 with CF, born and raised in California and currently living in Tecumseh, Oklahoma. Lizz was diagnosed at age 3 and is currently working as a senior social worker at a medium-secure juvenile facility and recently completed her program at East Central University.
Lizz is active in her church and loves to travel. Lizz is always on the lookout for her next adventure. Due to her low FEV’s, Lizz exercises with oxygen and is RELENTLESS in her quest to stay fit and beat CF. Lizz has found that through the “power of exercise” she cannot fail with CF.
Lizz was hospitalized a lot growing up between the ages of 13 - 18 but states “My parents were amazing and taught independence”.
Lizz started to exercise consistently due to the decline of her lung functions to help delay a double lung transplant. Lizz made a commitment to exercising by doing treadmill for 30 minutes, 7 days/week. “It was difficult but I noticed slow improvement in my strength.
Lizz currently does weight training, treadmill, and biking.
“For me, the rewards of exercise include muscle tone, breathe a little better, and more energy”.
Lizz did her first 5K event, the Dirty Thirty. “It was a mud run (with obstacles) and I did it with my oxygen tank”.
“Coping with CF is not always easy… but I maintain a heart of gratitude, thinking of the good things in life and the great support of my family” states Lizz.
Lizz’s Tips:
“Just start”
“Have a support staff”
“Faced with challenges… ALWAYS look for the silver lining”
“ Continue to fight!”
“Life is an Adventure… GO for it!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Meet Beau Rich – a 23-year-old filmmaker, actor, writer, musician, and traveler living, breathing, and succeeding with cystic fibrosis.
After a series of tests and hospital stays, Beau was diagnosed with CF at six months old. By the age of 11, he took up skateboarding and discovered that it was a fun way to stay in shape and clear his lungs. Today, Beau makes a daily effort to stay healthy by staying compliant and exercising so that he can live life however he wants. By using his portable vest and treatments, he is able to stay healthy on the go and is able to keep his body moving so that he can enjoy every single day.
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
The Boomer Esiason Foundation (BEF) is launching its newest Team Boomer event series, Bike to Breathe, which kicks off with Jerry and Em’s Great CF Adventure – a journey that will take the two cystic fibrosis (CF) advocates on a 500-mile bike ride from Cary, N.C. to Baltimore, M.D.
Jerry Cahill and Emily Schaller will start their ride from the Chiesi USA headquarters, located at 1255 Crescent Green, Cary, NC 27518, at 10 a.m. on Monday, Sept. 15, 2014.
The Team Boomer event series encourages people with cystic fibrosis and their families to stay active and exercise in order to stay healthy.
Cahill is a 58-year-old CF patient and double lung transplant survivor who is living proof that an active, healthy lifestyle positively affects his quality of life. He is currently BEF’s CF Ambassador, volunteering for the Foundation to help the CF community in the here and now.
Schaller is a 32-year-old CF patient who started cycling, running, and exercising in 2007, when she was introduced to Cahill’s story, because she was “sick of being sick.” At the same time, she started the Rock CF Foundation to heighten public awareness about her disease and to raise money for research.
This podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.
“Traveling with Cystic Fibrosis Pre & Post Transplant” – Anna Modlin
Anna Modlin, 32 with CF, born and raised in the Bay area and had a double lung transplant on November 22nd 2010. Anna was diagnosed at 18 month of age, had a fairly normal childhood, hospitalized for the first time at 4 years of age and then not until junior high school. Anna graduated with a Masters in Counseling Psychology and her hobbies include cooking, spending time near water, and post transplant has become passionate about exercise. Anna, a true fighter, competes in the Transplant Games and gives back by volunteering in the CF community. Anna is LIVING BREATHING SUCCEEDING, passionate about living and “The hero of her own story…”
Anna prepares a travel list before ever adventure.
Some things on the list include: Mira Lax, masks (N95), hand sanitizer, Clorox wipes, and an extra lithium battery for her glucose meter.
Anna always “carries on” her medications, has a letter from the doctor, washes hands frequently, and only drinks bottled water on trips (never tap water…). “Also I carry extra scripts…” states Anna.
Anna will always request a refrigerator at hotels but if not available will use an ice bucket at hotel.
Insurance… just in case there is a problem with flights or getting sick while travelling, Anna always purchases travel insurance. Anna likes Travel Guard. (www.travelguard.com).
Sinus issues? Anna travels with Neil Med saline packets for sinus rinses and uses distilled water.
“Since constipation is common for normal people when travelling, people with CF should use Mira Lax to help combat this problem.
Anna’s Travel Tips
Before: check list & chargers/adapters, and pre board.
During: Hydrate, Snack, Positive attitude
After: Rest
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
"You can expect to live a pretty long lifespan. So don’t waste it. Have some goals. Find your passion. And pursue it.” In this podcast, we meet Eric Hyman, a 36 year old who is living, breathing, and succeeding with cystic fibrosis. He shares a little bit of his background, interests, and what keeps him motivated to stay healthy and to keep a positive attitude even when things get difficult. He has learned to gradually share with people in his life about having CF – from friends to business and work associates. One of his favorite pastimes is playing music – which helps him keep his airways clear and his lungs healthy.
This video podcast/vodcast was made possible through an unrestricted educational grant from Novartis Pharmaceuticals Corporation.
Direct download: watch.
Category:general
-- posted at: 4:29pm EDT
Lindsay Shipp:The Power of Exercise and Nutrition with CF
LINDSAY SHIPP, 30 years old from Madison, Wisconsin currently living in San Diego, CA for the past 7 years and studied classical ballet for over 20 years. Lindsay’s hobbies include running, spinning, heated yoga, and nutrition.
Lindsay was diagnosed at 9 months of age.
“I had a normal childhood and traveled the USA competing in dance,” states Lindsay.
After 20 years of ballet Lindsay stopped exercising and her lung function dropped considerably
“When I stopped dance and exercise I started to get sick a lot more and my lung function dropped drastically… so I started the long uphill battle back to exercising with treadmill, spinning classes, and eventually running outdoors. It took months to get back in shape and clear out my lungs,” states Lindsay.
Living with CF and exercising is a “journey…”” and that journey is what keeps Lindsay going and evolving.
Lindsay’s motivation to exercise is her CF and clearing out her lungs and “coughing it out”.
Lindsay’s goal is to run the Boston Marathon in 2015.
Lindsay’s advice…”Get out there and do any type of exercise” It’s all about the journey…
This CF Podcast is made possible through an unrestricted educational grant from GILEAD to the Boomer Esiason Foundation.
In this podcast, Jerry discusses at-home spirometers, mainly the Spiro PD - a personal spirometer that empowers respiratory patients to monitor their lung function remotely and to comply with medication and treatment protocols.
The telemedicine feature allows patients to upload their test results to their computer in order to better communication with their medical team.
In this episode, we talk to Karen Vega from New York, who is 33 years old with CF, happily married and a mother of 3 always “on the go…” exercise enthusiast, and training for a ½ marathon. Karen never let CF get in the way of her living life to the fullest and keeping her dreams alive!
Podhaler Facts:
· TOBI Podhaler is a dry-powder treatment delivered in a disposable device.
· TOBI Podhaler is taken twice a day, and needs little setup and cleanup.
· The Podhaler is a great On-the-go device
· The unit does not require disinfection, refrigeration, power source, or batteries
· Administered in 2 – 7 Minutes (in clinical trials)
· 12.44% improvement in lungs · Helps to fight Psudomonas aeruginosa
· 64% reduction in percentage of hospitalizations
· 15% less need for intravenous (IV) antipseudomonal antibiotics
Direct download: blob.
Category:general
-- posted at: 3:00pm EDT
Jerry Cahill, a man in his late 50s, living, breathing, and succeeding with cystic fibrosis shares his journey through a double lung transplant. The drive behind his success is his ability to make the fight to live a competition and his gratefulness to his donor - living well and never giving up is his way to pay tribute to the person who lost his life so that Jerry could live.
Organ Donation Facts:
90% of Americans say they support donation, but only 30% know the essential steps to take to become a donor.
Every ten minutes, another name is added to the national transplant waiting list.
Nearly 1,800 children under the age 18 are registered on the organ transplant waiting list.
Eighteen patients die every day while waiting for a donated organ – an average of one person every 80 minutes.
Nearly 117,000 people in the United States are waiting for organ transplants – 1,668 of whom need lung transplants.
In spite of the 1,700 lung transplants performed in 2010, 233 patients died waiting for lungs.
Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:
Fact: Anyone can be a potential donor regardless of age, race, or medical history.
Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.
Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.
Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.
Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.
act: There is no cost to the donor or their family for organ or tissue donation.
To learn more about lung transplantation and organ donation, click here.
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.
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.
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.
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.
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.
“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.
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.
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.
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.
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
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.
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, 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.
April is "National Donate Life Month," a celebration which took on new meaning today when the Boomer Esiason Foundation's Jerry Cahill underwent a double-lung transplant.
Jerry's surgeons earlier today reported that the transplant procedure was a success and that Jerry has been transferred to the intensive care unit at Columbia University Medical Center.
Please join with us in sending thoughts and prayers to Jerry, his family, his medical team and the donor's family during the critical post-op time period. For updates on Jerry's recovery, please visit the BEF Facebook page.
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.
Colleen Caul was born into a big Irish family in St. Louis, Mo. Growing up, Colleen was always active, but her whole life changed in 2004, when her uncle started to coach her little sister, Katie Rose, how to run. Katie Rose has cystic fibrosis. Elated to see the positive effect that running was having on her sister’s health, and inspired by their dedication, Colleen started to run.
In the past five years, Colleen has completed four marathons and recently completed the “Run for Roses,” a 65-day running pilgrimage to spread awareness, raise funds and share stories about cystic fibrosis.
Colleen founded the Run for Roses Foundation (www.runforroses.com) to support her efforts to raise funds toward a cure for CF.
- In honor of her sister, Katie Rose, Colleen ran from St. Louis to New York City from July to September 2011. She ran 1,000 miles in 65 days for one dream: to cure cystic fibrosis. - Colleen ran 15.5 miles each day, and her stretching routine was about three hours a day. She ate Starburst candy for energy during her runs and refueled with chocolate milk. - During the 65-day run, Colleen blogged with friends and fans. In Ohio, she had the opportunity to run with a family that has two children with CF. “It was amazing, they both ran four miles with me,” Colleen says. - “People with CF never have a day off … when things got tough during a run, I just thought of that and said I can do it!” she says. - “Crossing the finish line in New York City was incredible,” Colleen says. “Katie, family and friends joined in for the last five miles – it was an out-of-body experience that I will never forget.” - The overall message Colleen wants Run for Roses to communicate is HOPE & POSITIVITY.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Josh Mogren: Moving Forward After Losing a Sister to CF
Josh Mogren is a 32-year-old with cystic fibrosis and cerebral palsy. Josh, who lives in St. Paul, Minn., discusses overcoming all obstacles with CF, including the loss of his sister, Angela, to CF. Josh has been happily married to Carly for five years, and also enjoys the company of their two dogs and the puppet, “Moganko.” Josh has a blog (www.welcometojoshland.com), is a movie buff, enjoys singing karaoke, and is LIVING BREATHING & LOVING LIFE.
Josh was diagnosed with CF at birth; his older sister, Angela, also had CF.
Josh has fond memories of his Angela: “Angie was strong-willed, very funny and a real prankster. My sister taught me to be a strong advocate for myself, and that is very important when you have an illness like CF,” Josh says.
“Growing up, Angie was a lot sicker than I was, and that was very frustrating for her. I felt terrible about it ‘cause I was doing so much better – it was not fair,” he says.
Josh believes it’s ok to be sad but that people with CF have to keep fighting and be HAPPY!
“Having fun and making light of things is the key to being happy. That is why I created my blog and YouTube site (“Welcome to Joshland”). I share a lot of my thoughts and stories about my life, CF, and otherwise,” Josh says.
Josh appreciates things a lot more since the loss of Angie, and he feels blessed to have a great family and friends.
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…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Jerry Cahill has been an inspiration to the CF community for many years. His message of living, breathing, and succeeding has touched the lives of many people living with cystic fibrosis.
Recently, we tagged along with him on the way to Milwaukee, where he spoke to packed house at Children's Hospital of Wisconsin. Jerry's message was clear - everyone with CF should be exercising and getting involved in the CF community. Jerry talks about his lifelong struggle with CF and his no-nonsense approach to managing CF on a daily basis.
To learn more about Jerry Cahill, the Boomer Esiason Foundation, and cystic fibrosis, be sure to visit our website at www.esiason.org. Share your thoughts and stories with Jerry by e-mailing him at jcahill@esiason.org.
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.
Valerie Batz, a 52-year-old with cystic fibrosis (CF), received a double lung transplant 13 year ago. In this podcast, she discusses life “pre and post” her transplant.
Valerie has been happily married for 24 years and is the proud mom of healthy twins who are now 22 years old. Valerie studied in Paris, majoring in international business, She speaks three languages and has worked for an international computer company. Val’s passion is cooking, especially Italian food, and her dream vacation is to return to Paris for her 25th wedding anniversary.
Valerie is living, breathing and succeeding in Illinois with her beautiful family, and although she still has CF, she breathes easier with her new lungs.
- Valerie was diagnosed with CF at 22 months old. “I’m grateful to my parents who raised me with high expectations, and treated me like a normal child,” she says. - Pre-transplant, Valerie was always sick, everything was an effort, and due to lack of oxygen, she always was tired. “Life pre-transplant was overwhelming, as my FEV’s were less than 20 percent,” Valerie explains. - Growing up, Valerie was active in swimming, cheerleading and skiing. Post-transplant, she stays active by biking. - “Transplant is not a cure … you trade one disease for the other, but this disease is better, I can breathe,” she says. - “Life post-transplant initially is a little bumpy, but you will get through it and it is worth it,” Valerie says. - Valerie’s advice: “Don’t touch your face, eyes, nose … that is how we all pick up germs and get sick.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Living, Breathing, and Succeeding for 100 podcasts!
We salute Jerry Cahill, an inspiration to many inside and outside the cystic fibrosis community!
Jerry started the CF Podcast in 2005. Since then, they've grown in popularity and given a voice to people with CF. More importantly, they've given hope to thousands who struggle with cystic fibrosis on a daily basis. If you've missed a podcast, you can catch all of them online at www.jerrycahill.com.
Living. Breathing. Succeeding. Congratulations, Jerry Cahill.
For more information on cystic fibrosis, Jerry Cahill, or the Boomer Esiason Foundation, be sure to visit our website, www.esiason.org.
Karen Vega, 30 years old with cystic fibrosis, discusses her pregnancy with CF and the joy of having twin boys. Karen and her husband, Alex, have two-year-old twin boys, Jayden and Logan. In this podcast, Karen describes the medical concerns she faced and the treatments she undertook for her successful pregnancy.
Karen is LIVING, BREATHING and SUCCEEDING with a beautiful family!
A little more than a decade ago, marriage and starting a family seemed to be an unthinkable dream for people with CF. Through advancements in treatment of the disease and being compliant, the dream became a reality for Karen and her husband.
• Karen grew up in New York, was diagnosed with CF at eight months and also has a brother with CF. • Karen attended Fordham University, worked on Wall Street for six years, and now is a stay-at-home mom. • “My doctor was very supportive and recommended my FEV’s be above 70 percent before deciding to start a family,” Karen says. • “One medical concern with a CF pregnancy is that sometimes people develop diabetes (CFRD),” she explains. • Karen saw a high-risk OB, and she also saw the doctors every two months instead of three months. • “You must establish a routine to balance family and health, and it’s important to have a good support team,” Karen says. “My mom moved in to assist me after I gave birth to Jayden and Logan.” • “The biggest challenge I face being a mom is time management,” Karen says. “I started jogging, and the exercise has been a major factor in keeping me healthy and a good way to get out with my two beautiful boys in the stroller.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Eileen Minogue, Director of Operations for Patient Airlift Services (PALS), discusses arranging FREE air transportation for patients with in CF in need of medical diagnosis or treatment.
PALS is a nonprofit 501(3)c that is helping the CF community and “changing the world, one flight at a time …”
- PALS offers three missions:
Medical Missions help people with CF who need medical care but cannot afford air transportation.
Compassion Missions assist family members traveling with individuals with CF. “This relieves a lot of stress,” according to Eileen.
Humanitarian Missions where PALS assists with national disasters.
- “PALS is not an air ambulance, and the pilots are not medically trained. We offer financial support through free flights for those people with CF in need,” Eileen explains.
- Pilots associated with PALS volunteer their time, plane and fuel to help people with medical problems such as CF.
- PALS flight requirements:
Financial need must be verified with a social worker.
Patient must be ambulatory and medically stable.
If individual requires oxygen, it must be FAA approved. PALS does not provide oxygen.
- PALS can fly to and from more than 5,000 airports.
- PALS can cover flights in the entire Northeastern United States, and they are linked nationally through the Air Care Alliance Group.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Direct download: PALS2.mp3
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Gunnar Esiason, a 19-year-old with cystic fibrosis, is a sophomore majoring in English at Boston College. Gunnar is physically active in intramural sports, works at being compliant, and loves college life.
Gunnar was diagnosed with CF at the age of two. He had a normal childhood and played lacrosse, baseball, football and ice hockey. Gunnar, despite the usual frustrations, never lets CF get in his way from leading a normal life.
Gunnar feels very comfortable living with roommates in a dorm setting and sharing about cystic fibrosis. “Having roommates just adds to the whole college experience … I would not do it any other way,” he says.
“Going away to college has taught me to be more independent, and be responsible for doing my medications, airway clearance, getting enough rest, cooking and proper nutrition. I don’t want to get sick, so I have learned to take responsibility for my actions,” Gunnar says.
Gunnar values sleep and tries to get nine to 10 hours a night. His priorities are staying healthy, academics and socializing. Regarding socializing at college: “You have to make the right decisions and avoid people who smoke.”
Gunnar on telling people at college he has CF: “I am straight up with them and keep it simple – it’s a respiratory disease. Telling people I have CF helps them and myself grow – that is part of the college experience …”
Gunnar’s role models: “My parents and my sister Sydney [also attending BC]. They BELIEVE in me and are always telling me I can do it. My family is the best and they always push me to take care of myself.”
Gunnar’s advice to others thinking about going to college: “Do it – go to college and experience it! If you have the opportunity to go away to school – do it! Be independent and your own person – you will grow as a person.”
Gunnar on Gunnar: “I am a nice person, I enjoy living life to the fullest and I have no regrets … It’s all about going forward and not living in the past …”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the fourth in our third season and is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Eric Arthrell, 22 years old with cystic fibrosis, lives in Waterloo, Ontario, and talks about getting out there in the working world after college.
Eric is working full-time, supporting himself financially, socializing, exercising ― he is running ING New York City Marathon for Team Boomer on November 7 ― and LIVING BREATHING SUCCEEDING through compliance.
Eric was diagnosed at birth and had a normal childhood. “I just had to stay compliant, and I did a lot of exercise. I started ice skating and playing hockey at a very early age – everyone in Canada plays hockey.”
Eric graduated from Wilfred Laurier University (Waterloo, Ontario) with a business degree.
Eric enjoys participating in all sports, loves to travel (he recently made a trip to Africa) and also performs in a band.
Regarding work: “I started working in the 10th grade and had a lot of various jobs, including sales in a sporting goods store, ground work at a golf course, and roadside construction.”
Eric has never let CF be an issue when interviewing for a job or while working at a job. “I just keep work and CF separate, but it is important to get a job with a good health insurance plan,” Eric says.
Eric currently works 40 to 50 hours a week in commercial banking and does a lot of analysis. He would like eventually to go into the social enterprise part of business and possibly be a college professor.
Eric on the future of CF: “In 10 years, CF will not be looked at as a terminal illness; people with CF will live a long, full life and just have to deal with doing therapies.”
“Family support has been the most important thing in my life that helps me get through the day when living with CF,” Eric says.
Eric on the career world: “Go out there and add to society, set goals and accomplish them ― better the world!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the third from our third season made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
This year Team Boomer – Fighting Cystic Fibrosis will have over 120 runners competing in the ING New York City Marathon - ALL will be running and fundraising for a cause.
Eric Arthrell, 22 years old from Waterloo, Ontario Canada is running to raise awareness, fundraising for a cure, and to stay healthy.
Eric was diagnosed at birth with cystic fibrosis and staying active has helped maintain his health.
The ING New York City Marathon will be Eric’s first marathon.
“Exercise is the key to staying healthy with cystic fibrosis,” states Eric.
Eric’s goal for the marathon is 4 hours 30 minutes.
What Eric is looking forward to the most about the ING New York City Marathon: “Crossing the finish line.”
Bob Esparza is the loving father of a 10-year-old son, Tyler, who has cystic fibrosis. Bob and his wife, Susan, live in Texas, where Tyler goes to school and stays active. Bob and Susan have been married for 17 years and have three children.
Bob and Susan found out Tyler had cystic fibrosis at age five due to many allergic reactions that were initially diagnosed as asthma. “Denial … was our initial reaction and the more research we did on CF, the more frightened we became,” Bob says. “For the first six months, we put Tyler in a bubble, but the doctors were great and helped us outgrow that mentality.”
Bob and Susan don’t let anything hold Tyler back. They let him enjoy his life and run around with his friends because “he’s a kid and needs to have fun.”
The thing that scared Bob the most about CF is that everything is “shortened … life is shortened, but I see people like you (Jerry Cahill) at 54, and you give us hope.”
Bob and Susan get involved in the CF community by doing CFF Great Strides every year.
“When times get tough, my wife and I lean on each other for support, as well as our family and church,” Bob says.
Bob’s advice to other parents with a CF child: “Treat your son or daughter like normal, and let them be a kid and enjoy.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 2nd in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Bryan Pendarvis is 21 years old and lives with cystic fibrosis. Bryan, who’s from Louisiana, is in his senior year at Southeastern University, where he is studying microbiology. Bryan is exercising, studying hard, in an intimate relationship, and LIVING-BREATHING-SUCCEEDING through compliance.
Bryan was diagnosed prenatally, as his older brother also had CF.
“Staying active and trying to live a normal life and do everything that any normal person does, including dating, is my focus,” says Bryan.
He enjoys all sports, especially baseball, softball, jogging and weightlifting.
Bryan started dating around age 13. Dating made Bryan take better care of himself, as he wanted to be “normal” and not show signs of weakness.
“When dating I look for someone that is compassionate, communicates, and willing to understand. I did not ask for CF, I was born with it,” he says.
On telling someone that you are dating about your disease: “First, I want her to get to know me for who I am and secondly for cystic fibrosis. When the time is right, I start with the basics and do not overwhelm them. I try to be subtle.”
Bryan’s relationship with his mother and older brother, Shaun – who passed away from CF a little more than a year ago – have had a major impact on his life. “My mom is always there for me and helps me overcome obstacles. My brother Shaun taught me how to live with CF and how it should NOT hold you back.”
Bryan on relationships: “Family is what matters and what is at heart …”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Danny Ferrone, a 26-year-old with cystic fibrosis, lives in Illinois and competes in triathlons. Danny is going to school to be a fitness instructor; he also is the founder of the Fight Forever Foundation.
Danny grew up playing baseball, soccer, football, BMX biking and basketball. “My parents believed in keeping me active,” he says. “I returned to school to be a fitness instructor so I can do what I love in life and stay healthy.”
Besides vigorous exercise, Danny believes in good nutrition as part of his programs to stay healthy. “I eat a lot of fish, pasta, fruit, veggies, and try and stay away from dairy,” he explains.
Danny likes variety in exercise training, so he has added swimming, yoga and boxing (mixed martial arts) to his training routine. Danny has competed in four marathons (best time: 4hours, 18minutes) and four triathlons, including a Half Ironman.
The biggest challenge Danny faces related to exercising and CF is dehydration, but his secret is a lot of water, electrolytes and drinking salt water.
“Exercising with CF can be uncomfortable, but throw yourself into it and be HONEST with yourself … you will feel better,” he says.
Danny’s recommendation to others with CF: “Challenge yourself, keep pushing, and remember you are not alone – fight hard.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 12th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Maggie Sheehan, 22 years old with cystic fibrosis, talks about her great experiences attending the CFRI Retreat in Northern California. The retreat takes place off the beaten path under the “redwoods," just minutes from Stanford Hospital. CFRI is a great organization that empowers the CF Community to attain the highest possible quality of life.
The CFRI Retreat has been in existence since the 1990s. Maggie has been attending for the retreat for five years, and scholarships are available.
“Activities at retreat include rap sessions, arts & crafts, sporting events, fun in the sun, and great food!” Maggie says.
To attend the retreat, you must be over 15 years old with guardian, and over 18 years old by yourself. Friends and significant others are welcome to attend and join in the fun.
The retreat is a very safe environment that follows strict guidelines regarding cross infection. Maggie feels that the retreat is “safer than the real world."
“My favorite part of the retreat is the sharing and the talent show at the end of the week,” Maggie says.
Maggie continues to return to the retreat because of the great friends she makes and the awesome connection to the CF community. She feels refreshed at the end of the retreat.
Gwen Shusterman discusses various ideas on FUNDRAISING for a cause.
This year Team Boomer – Fighting Cystic Fibrosis will have over 100 runners competing in the ING New York City Marathon - ALL will be running and fundraising for a cause.
Team Boomer – Fighting Cystic Fibrosis was set up through the Boomer Esiason Foundation to help raise funds for the fight against cystic fibrosis and raise awareness to the importance of exercise for people with CF.
Team Boomer’s goal is to improve the “quality of life” and “lifespan” of individuals with CF through the power of “daily exercise." As therapeutic developments increase the lifespan of CF patients so does the need for further education in the area of exercise.
Gwen believes there is no secret to fundraising: “It’s an art and partly as science ... fundraising is personal so you have to do it in your own style."
“Come up with a game plan: First think of a target number and then think of EVERYONE you know who you can possibly approach,” Gwen advises.
Think outside the box. “People are going to surprise you. All those people I said to put on the list – the acquaintances, your kid’s friend’s parents, an old boyfriend/girlfriend, the person you met at a conference last month – they all add up," Gwen says.
Once you have your list together the next step is setting up a First Giving page: www.firstgiving.com/TeamBoomer.
“Next take your list and send out an email blast with your fundraising page info to ALL your contacts," Gwen says.
Other ideas for fundraising include special events such as happy hour at a local bar, golf events, school events, and many companies have “matching gift” programs.
Why can’t I tell people what my minimum is? “Really, if you entered this kind of event (marathon) then I doubt you’re the kind of person who just settles on the minimum,” Gwen says.
A lot of work? “If you mean does fundraising take time – yes it does! To be successful you have to personalize your story and it’s really important to start early!”
Final thoughts: “I think anyone who is willing to do something like join TEAM BOOMER is amazing. It takes a special person to make this kind of commitment. Use your passion. Good luck!
Jerry Cahill, 54 years old with cystic fibrosis, lives in Brooklyn, N.Y. Jerry is exercising with oxygen to keep his lungs clear, coaching and volunteering at the Boomer Esiason Foundation as he awaits a double-lung transplant. Jerry attacks the day and is living, breathing and succeeding with CF.
Jerry was diagnosed at age 10, and the doctors told his parents he would not make it to his 16th birthday.
“Growing up with CF is challenging, but you just have to push through ... it’s a discipline,” Jerry says.
Jerry loves being outdoors all year and exercises with a small oxygen tank, which helps him breathe better while he awaits a double-lung transplant.
“I believe in a complete program of being compliant to medications, good nutrition, exercise and a fun social life,” he says.
“Going out on disability is tough, but you just have to RE-INVENT yourself."
Jerry believes in “attacking the day and focus on living! I look forward to tomorrow and the next day, next week, and next year ...”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 11th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Walks on the Beach with Angie: A Father’s Story of Love describes Don’s relationship with his beloved daughter, Angela, who had cystic fibrosis. Don Warner and his wife, Linda, did everything they could to give their only child immeasurable love and the fullest life possible, all the while carrying out an aggressive treatment regimen to fight her fatal disease.
Angela was diagnosed at three months of age, and Don recalls how the information they found on CF at the library was alarming and frightening.
“Angie was an active child and a normal high school kid ... very involved in cheerleading,” Don says.
During the final 86 days of her life, as Angie lay in the intensive care unit on a ventilator, the Warners were surrounded by loved ones. The grief and loss that Don and his wife experienced prompted him to write a book and create a lasting legacy in her honor.
Angela loved vacationing with the family in Laguna Beach, taking walks on the beach at night star gazing, and having great conversations about life.
Don Warner’s advice to CF patients and their families: "Keep fighting every day."
Don Warner’s recommendations to others who experience the loss of a child from a fatal disease: “Whatever pain you are feeling, it’s ok. Surround yourself with loved ones, and have faith and hope that you will reunite some day."
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 10th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Dan Palumbo, 53 years old with cystic fibrosis, is married and the proud father of twins who both are in law school. Dan has his own advertising agency, but due to the progression of CF, he is considering disability so he can spend more time taking care of his health. Dan is living, breathing and succeeding with CF.
Dan was diagnosed at one month of age in Wilkes-Barre, Penn.
Dan graduated college with a degree in communications and advertising and then worked at a local TV station before opening up his own advertising agency in 1980.
“I stay very compliant and manage my health because I have goals and dreams and I want to achieve things," Dan says.
Dan is considering disability because, at age 53, it is getting tougher to get through the day with all the treatments and a full-time job.
“Disability may be my only choice if I want to stay alive and watch my son and daughter start families – I want to be a grandfather," Dan says.
Dan’s biggest fear about disability is the loss of a lot of his business relationships/friends, but he feels his health is more important at this point in time.
“I am a published songwriter, and I will exercise more and do more treatments once I go out on disability. It’s all about MORE treatments to stay healthy with CF," he says.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 9th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Travis Flores, 18 years old with cystic fibrosis, grew up in Ohio and is attending college in New York City. Besides going to school, Travis has written a children’s book, has two websites that are raising awareness and funds for cystic fibrosis and is a "Heroes of Hope" award recipient. Travis is living, breathing and succeeding with CF.
Travis started advocating for cystic fibrosis at a very young age and “embraces cystic fibrosis.”
The Spider Who Never Gave Up is a children’s book that Travis wrote when he was eight. (www.sparkeythespider.com)
Travis also created a non-profit organization that helps get computers for children and adolescent patients in the hospital so they can communicate friends (www.tfcf.org)
Travis enjoys being active in the community, writing music, people watching and taking long walks.
“Living with CF, it is important to find a balance with being compliant and your social life, as well as having a great support team,” Travis says.
Travis’ goals include: graduate college, succeed in career, and raise awareness for cystic fibrosis.
Travis’ recommendation to everyone: “Embrace life!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 8th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Casey Flaherty, 25 years old with cystic fibrosis, lives in New York City and is training for the ING New York City Marathon. Casey also is working, attending nursing school, taking yoga classes and living, breathing and succeeding with CF.
Casey eats a high-calorie, well-rounded diet consisting of fruits, nuts, vegetables, dairy for calcium, and lots of carbohydrates and protein.
“Besides being adherent to my treatments, I believe in good nutrition, exercise and rest. I try to get eight hours of sleep every night,” Casey says.
Casey loves junk foods like baked goods and pizza, but she tries to stay away from foods high in corn syrup and processed goodies.
“I am always eating throughout the day, so I make sure I pack my bag with fruit and trail mix,” she says.
Casey’s little secret on nutrition and CF is that she eats a lot of peanut butter and cheese as snacks because of their nutritional value.
“CF is part of my life, and I just deal with it. Everyone has something,” Casey says.
Casey’s recommendations to others with CF: “Be adherent to your medications, eat a well-balanced diet, rest and communicate with your doctor."
Casey believes “the more you put into your health, the more you will get out of it!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 7th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
In this riveting video interview, Brian Gerofsky's wife and two sons share his story only months after he succumbed to CF in May 2009 at the age of 57.
Debbie was married to Brian for 26 years and has two wonderful sons -- Evin (22 years old) and Alex (19 years old).
“Brian was funny, loving, smart, passionate ... and to know him was to love him," Debbie says. Brian always called Debbie his soulmate, and his song for her was Van Morrison’s "Brown Eyed Girl.”
Brian was very private, independent and compliant with his CF care, as he did not want to burden his family. “We lived our life around Brian’s CF but did not let it stop us from LIVING!” Debbie says.
The Gerofsky family did a lot together, enjoying the beach, museums, music, dance and Broadway shows. The family meant everything to Brian. He believed in hard work and LIVING YOUR LIFE!
Debbie, Evin and Alex believe the most important thing in a family dealing with CF is “open communication and respecting each other's feelings.”
Evin and Alex admired their dad’s strength and the fact that he was always there for them. “If my dad was here right now I would like to tell him THANK YOU and I love you very much,” they said.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through an unrestricted educational grant from Genentech to he Boomer Esiason Foundation.
In this riveting video interview, Brian Gerofsky's wife and two sons share his story only months after he succumbed to CF in May 2009 at the age of 57.
Debbie was married to Brian for 26 years and has two wonderful sons -- Evin (22 years old) and Alex (19 years old).
“Brian was funny, loving, smart, passionate ... and to know him was to love him," Debbie says. Brian always called Debbie his soulmate, and his song for her was Van Morrison’s "Brown Eyed Girl.”
Brian was very private, independent and compliant with his CF care, as he did not want to burden his family. “We lived our life around Brian’s CF but did not let it stop us from LIVING!” Debbie says.
The Gerofsky family did a lot together, enjoying the beach, museums, music, dance and Broadway shows. The family meant everything to Brian. He believed in hard work and LIVING YOUR LIFE!
Debbie, Evin and Alex believe the most important thing in a family dealing with CF is “open communication and respecting each other's feelings.”
Evin and Alex admired their dad’s strength and the fact that he was always there for them. “If my dad was here right now I would like to tell him THANK YOU and I love you very much,” they said.
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through an unrestricted educational grant from Genentech to he Boomer Esiason Foundation.
Kevin McCrea, 18 years old with cystic fibrosis, lives in Washington and loves life. Kevin attends Washington State University, is involved in many sports and enjoys spending time with family and friends. He believes in “shaking up the lungs and clearing them out” through vigorous sports.
Kevin was diagnosed with CF at age two and grew up in a small town in the Northwest. Living in the country, Kevin enjoys swimming, hiking, fishing and riding dirt bikes.
“In high school, I was actively involved in team sports, including track and field [four years], basketball [two years] and football [one year]. Sports was a social event and has made a major impact on my health,” Kevin says.
Kevin’s training in basketball and track and field was two hours a day, six days a week, and the running and jumping made him cough and clear out his lungs.
Kevin on being compliant: “I believe in staying compliant and doing all my treatments, including exercise, so I can stay healthy and live a long life."
The biggest challenge Kevin faces with CF is time management of all the treatments.
“CF is not a big deal to me ... I was born with it, live with it, and it will not stop me," he says.
Kevin’s advice to other teens with CF: “Push forward an never give up – be active and go for it!”
“Step it up! Get out there and live and do not alienate yourself."
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 5th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Philip Stevanovic is 36 years old with cystic fibrosis and diabetes. He lives in New York, is married with twin boys, works full-time as a construction manager, and received a double lung transplant in August 2007 at New York Presbyterian/Columbia University Medical Center in New York City.
Philip was diagnosed at age two at the University of Minnesota.
“Growing up with CF was pretty uneventful, except that I slept in a mist tent. I played soccer, tennis, football and lived in Africa, the Middle East and Yugoslavia,” Phil says.
Philip was diagnosed with CFRD in 2006 via glucose tolerance test. “I kept getting repeat infections because I had high blood sugar, and bacteria feeds on sugar."
“I treat my CFRD with insulin shots before I eat, and that controls the sugar at meals. Blood sugars are controlled by food, medication and exercise."
“Since I started insulin treatment for my CFRD, I have gained weight, which is something I could never do with CF,” Phil says.
Philip sees an endocrinologist for his CFRD.
“My role models are my mother and father – they are responsible for making me the person I am today, and I thank them for everything.”
Philip’s recommendation to others with CFRD: “Enjoy life, be happy, stay focused and get an endocrinologist familiar with CF.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 4th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Patrick Newman, 18 years old with cystic fibrosis, lives in Missouri. Patrick is playing sports, enjoying friends and family, and gearing up for college. Patrick will attend the University of Missouri in the fall and is looking forward to being independent and taking responsibility for his health care.
Patrick works hard at staying healthy with all his treatments to manage his CF. “I know that those few tiny moments I spend doing my treatments could add years onto my life," he says.
“I grew up in a healthy environment, active in soccer, baseball and golf. I also learned, at an early age, to take responsibility for myself," he says.
Patrick is looking forward to going away to college to experience higher education, socializing and being “my own boss."
“I am very lucky to have my family and friends as a great support system, and I will be rooming with my best friend at college – it’s all about partnership," Patrick says.
The biggest challenge Patrick faces with CF is time management.
Patrick will be majoring in biology, wants to attend medical school, and hopes to study abroad for one semester.
Patrick on being compliant: “You do not want to play catch-up with your therapies, so just do it. I do it because I want to live and enjoy life!”
Patrick’s advice to others with CF thinking about college: “Step it up! Get out there and live and do not alienate yourself."
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 3rd in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Victor Roggli is 58 years old with cystic fibrosis. Victor lives in North Carolina, is married with a family, and works full-time in the medical research field. Victor, a professor of pathology, focusing on lungs, spends his workday teaching, doing research and consulting. Victor is LIVING, BREATHING and SUCCEEDING with CF in the career world and in life!
Victor was born in Winchester, Tenn., on a farm. He was diagnosed at 12 years of age.
“Growing up, I was always very active, playing touch football, softball and basketball. I am very thankful to my parents for letting me play sports and be a real boy," Victor says.
Victor attended Rice University, where he majored in biochemistry. He then attended medical school at Baylor in Houston.
“If I had a chance to do something differently when I was growing up with CF, I would have been more open about my CF and not put up so many walls," Victor says.
Victor now believes in being open about his CF and does his aerosol therapies at work. “With the American With Disabilities Act, people cannot discriminate.”
“Know your limitations with CF and be realistic in what you do in the career world," Victor advises.
Victor loves singing in the shower and has become a BIG fan of karaoke at least twice a week.
Victor’s advice to others with CF: “Do not adapt to CF, let it adapt to you.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 2nd in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Chad Brown is 27 years old with cystic fibrosis and lives in Seattle, Wash. Chad took his FEV1’s from 29% to 58% through the power of swimming. He previously was listed for a double lung transplant, and now he is getting his college degree, working to support himself, and exercising for life! Chad moved from Memphis to Seattle a few years ago and with a new CF team and new therapy and exercise discipline, he is LIVING, BREATHING and SUCCEEDING on a daily basis.
Chad was born in Tennessee and was diagnosed at birth.
“Growing up I was always treated very differently and in many ways babied. This temporarily helped me cope with the disease, but eventually it took a negative toll on me," Chad says.
Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people with cystic fibrosis."
“For me, along with my therapies, swimming has kept me alive and healthy. When I first started swimming, I could barely swim a lap. I now swim 45 minutes ... 5 days a week!”
Chad is pursuing a college degree in engineering, working more than 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good," he says.
Chad’s advice to others with CF: “No matter what, NEVER give up. It’s your life, and you only have one, so take charge and care of yourself!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Chad Brown is 27 years old with cystic fibrosis and lives in Seattle, Wash. Chad took his FEV1’s from 29% to 58% through the power of swimming. He previously was listed for a double lung transplant, and now he is getting his college degree, working to support himself, and exercising for life! Chad moved from Memphis to Seattle a few years ago and with a new CF team and new therapy and exercise discipline, he is LIVING, BREATHING and SUCCEEDING on a daily basis.
Chad was born in Tennessee and was diagnosed at birth.
“Growing up I was always treated very differently and in many ways babied. This temporarily helped me cope with the disease, but eventually it took a negative toll on me," Chad says.
Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people with cystic fibrosis."
“For me, along with my therapies, swimming has kept me alive and healthy. When I first started swimming, I could barely swim a lap. I now swim 45 minutes ... 5 days a week!”
Chad is pursuing a college degree in engineering, working more than 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good," he says.
Chad’s advice to others with CF: “No matter what, NEVER give up. It’s your life, and you only have one, so take charge and care of yourself!”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Isabel Stenzel Byrnes is 37 years old with cystic fibrosis and is living in Northern California. Isabel is a wanderlust, is post-transplant for five years, and is co-author (with her sister, Anabel) of the book, The Power of Two. Isabel has worked as a social worker and health educator and is LIVING, BREATHING and SUCCEEDING on a daily basis.
Isabel, along with her twin sister, Anabel, and family, has traveled the world. She has visited 12 countries and 41 states in the USA. Isabel started traveling at age eight and lived in Japan for one year.
Isabel was born in Southern California, diagnosed at birth, and had an active childhood, loving the outdoors and such sports as swimming, jogging and hiking.
Isabel graduated from Stanford University, competes in the Transplant Games, and most recently started playing the bagpipes.
“When traveling, I make sure I have the CF doctor contact info in the city I am traveling to, take extra prescriptions, wash my hands a lot, drink lots of water, and ALWAYS carry-on my medications," Isabel says.
Post-transplant, Isabel continues to travel and has added a mask during airplane travel.
“I have lived a very privileged life, and CF has taught me to be very disciplined. Everyone with CF is a mentor to me,” Isabel says.
Isabel’s advice: “Do not limit yourself, and allow yourself to dream.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the final in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
The Power of Two: A Twin Triumph Over Cystic Fibrosis by Isabel Stenzel Byrnes, Anabel Stenzel
"Born in 1972, twins who share this life-threatening disease give an honest portrayal of their struggle to live normal lives, their interdependence, day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival." (provided by publisher)
Julie Desch is 48 years old with cystic fibrosis and lives in Northern California. Julie is a single mom with two fabulous children. She works from home running a non-profit – New Day Wellness (www.newdaywell.org) -- and is LIVING, BREATHING and SUCCEEDING on a daily basis.
Julie has realized the benefits of nutrition and exercise. At New Day Wellness, Julie coaches nutrition, fitness, stress management and disease management to people with chronic illnesses – many with CF.
Julie was born in Nebraska and was diagnosed at birth. She is the youngest of seven siblings, attended Stanford University, and enjoys golf, running, weight training and reading.
"I enjoy sharing my thoughts on nutrition, wellness and exercise on my blog (www.sickandhappy.com). This is a great way to get the word out there," Julie says.
Julie’s “junk” foods include pretzels, yogurt and frosted mini wheats dipped in peanut butter.
“I am a firm believer in supplements such as fish oil, NAC and additional vitamins, but ALL are with doctors approval," Julie says.
Shakes and smoothies with protein added are a must-have when Julie is not feeling well or needs an extra boost.
“Eat early and eat often, and make sure you are eating lots of fruit, vegetables and protein – I eat a lot of the right foods."
On gaining weight: “Get involved in exercise, and especially weight training, and eat a lot," Julie advises.
Julie’s advice to others: “Hope ... and be compliant and aggressive to keep your lungs clear.”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 11th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Paul Drury is 42 years old with cystic fibrosis and is post-lung and -kidney transplant. Paul is happily married, working for the Cystic Fibrosis Foundation (Connecticut Chapter), a mentor to the CF community, and LIVING, BREATHING and SUCCEEDING on a daily basis. 24/7 for the CF community is what Paul Drury is all about. Not only does he live with the disease; Paul works for the CFF in fundraising and speaks to many people with CF on a daily basis.
Paul was born in Chicago - one of six children - and was diagnosed at age two due to “failure to thrive." He grew up in Connecticut and attended the University of Connecticut.
“Growing up with CF was a very private matter, and I jumped into the world of CF post-transplant," Paul says.
Paul believes “working for the Cystic Fibrosis Foundation lets me give back to others and have a major impact on their life by giving them HOPE. It makes me feel good."
Paul gives back at the CFF by doing fundraising for a cure and by speaking at events to raise awareness. He speaks to families and patients on a daily basis. “ I am like the poster adult for the CF community," he says.
Paul also is an artist and “gives back” by doing paintings (pointillism) for various CF events.
Paul’s biggest challenge on a daily basis: “Staying healthy.”
Paul’s advice: “Do your meds, exercise, nutrition ... and sometimes laughter is the best medicine."
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 10th in a series of of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Gunnar Esiason, a 17-year-old with cystic fibrosis, is a high school senior. Gunnar is actively involved in sports, being compliant, gearing up for college, and a team player in all aspects of his life.
Gunnar was diagnosed at age two and lives on Long Island with his family.
“CF has obviously shaped my life but does not get in the way of my being a normal teenager,” Gunnar says.
Like an athlete in team sports, Gunnar has a team of doctors and health care providers to make sure he is on top of his game.
“My CF team consists of my physician, dietician, nurse, respiratory therapist, social worker, and sometimes specialist in other areas as CF affects other parts of the body,” he explains.
“Besides my medical team, my family and friends are also a big part of my team. The more they know about me, the better they can help, and I can win the battle with CF."
Gunnar believes that being honest and truthful with your team is the key to succeeding in life and with cystic fibrosis.
Gunnar’s advice to others with CF: “Always communicate with your CF team. The more info you can give, the more your team can help you maintain good health, especially as you become more independent and move on to college.”
This podcast was made possible through and unrestricted educational grant from EURAND to The Boomer Esiason Foundation.
Jerry Cahill is 52 years old and is Living, Breathing and Succeeding with cystic fibrosis. Jerry talks about being listed for a double-lung transplant. Exercise has been a key factor in his life to keep his lungs clear and continues to be important pre-transplant.
Jerry grew up in Brooklyn, NY. He attended the University of Connecticut, competed in track & field specializing in the pole vault, worked in the apparel industry for 26 years, coaches track & field and a prep school, and volunteers at the Boomer Esiason Foundation as he awaits a double-lung transplant.
“Maintaining a positive attitude and being involved with people and events is key as I await the call,” Jerry says.
“As my disease progresses due to shortness of breath, and my quality of life deteriorates, it is time to move on to the next step – transplant,” he says.
Jerry believes he has been preparing for a transplant his whole life, as it is just another part of the battle with CF. “With CF, you always need to be prepared and RE-INVENT yourself!”
Jerry’s advice: “Stay active and involved, have a great team of doctors that you believe in, have a great support team of family and friends, fundraise, and gear up for NEW BEGINNINGS as the best is yet to come!"
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 9th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Gunnar Esiason is 17 years old with cystic fibrosis. He's a high school senior and actively involved in sports, being compliant, and gearing up for college.
Gunnar was diagnosed at age two and lives on Long Island with his family.
"CF has obviously shaped my life, but I am fortunate to have a great family and friends,” Gunnar says.
Gunnar loves to eat. Some of his favorite foods include steak, pizza, hamburgers, shrimp and carrots.
“I take my enzymes with snacks and meals so my body can absorb all the nutrients from my foods and help me to gain weight. Also, if I don’t take my enzymes, I will get stomachaches, and that is very uncomfortable," Gunnar says.
Gunnar keeps his enzymes in a pill box and always carries them in his pocket or backpack.
“I usually try and have four meals a day and snacks between meals, and I make sure that I have a lot of OPTIONS with my food choices. I also make milkshakes to get extra calories."
Gunnar’s advice on nutrition to others with CF: “Take your enzymes to help you stay healthy and keep your weight on and be energetic."
“My long-term hopes and dreams are to live a long and full, healthy life and play sports till I am 60,” he says.
This podcast was made possible through an unrestricted educational grant from EURAND to the Boomer Esiason Foundation.
Title: Episode #0072 Parents “Letting Go” as Their Child Becomes
Independent with CF
Donna Dorsett, Mom with beautiful daughter with CF shares her feelings on
“letting go” as her daughter becomes more independent attending college away
from home. As a parent you never let go… you let go physically but not
emotionally.
- Donna has 4 children (one with CF), divorced and living in New Jersey.
- “Our family is very close and we do a lot together – family is extremely
important” states Donna.
- Kristyn, her daughter, was diagnosed at 18 months and is now attending the
University of Scranton.
- When dealing with the ups and downs of cystic fibrosis Donna gets her strength
from family.
- “I never limit my daughter due to CF or treat my daughter as being sick”
states Donna, “Kristyn is not sick… she gets sick…”
- “My daughter has dreams and goals and therefore I need to let go so she can
pursue them…”
- Donna’s advice, “Look beyond the disease… look at your son or daughter… CF
cannot be #1 and allow them to live the life that you worked so hard at giving
them”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 8th in a
series of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Title: Episode #0071 Exercise-The Key to Being Compliant on a Daily
Basis
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior,
actively involved in sports, and gearing up for college
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- “Growing up with CF is an added burden but being compliant to my therapy and
exercise is the key to ” states Gunnar “.
- Currently a senior at Friends Academy, Gunnar is looking at many colleges and
universities including: Boston College, Bucknell, and Richmond.
- Gunnar’s favorite sport is hockey… “I am always moving on the ice and the
exercise makes me cough which is a great form of airway clearance”, states
Gunnar
- “Exercise, along with my daily medication/therapy routine is KEY to keeping me
healthy. I skate 45 minutes a day and have 2 games a week”
- Gunnar does not let CF get in the way of him living his life to the fullest…
“I do not let CF create obstacles in my life – I make sure it does not!”
- Gunnar’s advice: “Be active everyday! Cheating on your therapy = cheating on
yourself… GET OFF THE COUCH & MOVE!”
This podcast was made possible through and unrestricted educational grant
from EURAND to The Boomer Esiason Foundation.
Title: Episode #0070 Succeeding with CF in the Career World Through
Compliance with Cris Dopher
Cris Dopher, 37 years old with cystic fibrosis (CF) is enjoying his career in
the Fine Arts as a professional set/lighting and window designer for many
shows/department stores including Broadway productions. Adhering to his daily
therapies, Cris affords himself the opportunity to enjoy the financial awards of
a career, run marathons, and socialize in the game of life despite having cystic
fibrosis
- Cris grew up in California and Missouri, was diagnosed at age 4 due to
“failure to thrive”, and currently resides in New York.
- Cris has always been focused on goals and his first job, at age 16, was typing
a book for an author.
- “As long as I can remember I was out there in the working world… I worked at
MacDonald’s, was a receptionist for student housing in college, and worked in
tent theatre at college for hands on experience”, states Cris
- Cris has 2 bachelors degrees and 2 master’s degrees that include a Masters of
Fine Arts from New York University.
- The biggest challenge Cris faces with CF on a daily basis is TIME MANAGEMENT
but, according to Cris, “it’s all worth it!”
- “CF is background noise and it does NOT get in my way of living and enjoying
my life” states Cris.
- Cris recently ran the ING New York City Marathon in 5 hours and 50 minutes and
exercises 5 days/week.
- CBS Evening News recently did a piece on Cris: http://www.cbsnews.com/stories/2008/11/18/eveningnews/main4615319.shtml
- Cris’ formula for success: Compliance = Success. Be rigorous about your
therapies – without your health you cannot be a good worker and enjoy life!
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 7th in
a series of 12 made possible through and unrestricted educational grant from
Genentech to The Boomer Esiason Foundation.
Title: Episode #00689 Gearing up for College with Gunnar Esiason
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior,
playing football and hockey, staying compliant, and spending long hours on
college applications as he gets ready to move onward and upward.
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- Currently a senior at Friends Academy, Gunnar is looking at many colleges and
universities including: Boston College, Bucknell, and Richmond.
- “Being compliant is the key to living the life I want to live ” states Gunnar
“I like to be involved with family and friends and always doing something”.
- “The hardest thing about growing up with CF is the time management… but I make
sure I do my therapies so I can play football, hockey, and spend time with my
family and friends being normal”
- Gunnar’s biggest role models have been his parents, “They are always very
positive and pushing me forward” states Gunnar.
- Regarding college life and being independent and compliant… “I have always
been pretty independent growing up so going to college is just the next step in
the process to be even more independent and take care of my health. I always
remember that my health comes first”.
- “ I have CF but I don’t let it stop me from doing things in life, including
going away to college – I control my own destiny…”
This podcast was made possible through and unrestricted educational grant
from EURAND to The Boomer Esiason Foundation.
