54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis



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Syndication


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.

Direct download: BEF_PODCAST_PARENTING_CF-HD.mp4
Category:general -- posted at: 3:00 PM

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: 3:00 PM

“CF and Exercise with Low FEV’s” – Lizz Kaup

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.

 

Direct download: LizKaup.mp3
Category:podcasts -- posted at: 6:21 PM

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.

 

Direct download: Beau_Podcast-HD.mp4
Category:general -- posted at: 2:55 PM

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.

Direct download: Jerry_and_Em_Exercise.mp4
Category:general -- posted at: 4:33 PM

“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.

 

Direct download: AnnaModin_Interview.mp3
Category:podcasts -- posted at: 3:07 PM

 

"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: 8:29 PM

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.

Direct download: LindsayShipp.mp3
Category:podcasts -- posted at: 7:10 PM

 

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.
  • The Spiro PD measures FVC, FEV1, FEV1/FVC, FEF 25-75, PEF, % Predicted.
  • Spiro PD's audible voice coaches patients using visual cues, voice prompts, and onscreen instructions during tests to ensure accuracy.
  • Spiro PD life span is at least 5 years, depending on frequency of use.
  • Spiro PD is small, lightweight (only 9 ounces) and designed for portability with a re-chargeable battery that lasts several days on one charge.

To learn more about Spiro PD, please visit www.spiropd.com

* A prescription is required for all US purchases. *


This video podcast/vodcast was made possible through an unrestricted educational grant from Genentech.

Category:general -- posted at: 7:26 PM

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: 8:00 PM

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