52 Years Old and Living-Breathing-Succeeding With Cystic Fibrosis

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Cystic Fibrosis Podcast
Episode #0085 Casey Flaherty – Nutrition and CF

Casey Flaherty, 25 years old with cystic fibrosis, living in New York City and running the ING New York City Marathon. Casey 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 & protein,

-    “Besides being adherent to my treatments I believe in good nutrition, exercise, and rest. I try to get 8 hours of sleep every night” states Casey.

-    Casey loves junk foods like baked goods and pizza but 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” states Casey.

-    Casey’s little secret on nutrition and CF is that she eats a lot of peanut butter and cheese as a snack because if it’s nutritional value.

-    “CF is part of my life and I just deal with it… everyone has something” states Casey.

-    Casey’s recommendations to others with CF, “Be adherent to your medications, have 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 series is the 7th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: Flaherty3.m4v
Category: podcasts -- posted at: 6:37 PM
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Episode #0084: Remembering Brian - A Wonderful Husband and Loving Father

The Gerofsky family (Debbie, Evin, and Alex), the wife and sons of the late Brian Gerofsky share their heartfelt feelings about Brian. Debbie and her sons talk about living with CF in the family unit and share their fond memories of Brian.

-    Debbie was married to Brian for 26 years and has 2 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”, states Debbie. Brian always called Debbie his soul mate 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 and did not let it stop us from LIVING!” states Debbie.

-    The Gerofsky family did a lot together and enjoyed the beach, museums, music, dance, and Broadway shows. The family meant everything to Brian and he believed in hard work and LIVE YOUR LIFE!

-    Debbie, Evin, and Alex believe that the most important thing in a family dealing with CF is; “open communication and to respect each others 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” states Evin and Alex.

-    Brian passed away from cystic fibrosis in May 2009 at age 57.

-    Although Brian is gone his memories live on…

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: Gerofsky.wmv
Category: Vidcast -- posted at: 8:49 PM
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Episode #0084: Remembering Brian - A Wonderful Husband and Loving Father

The Gerofsky family (Debbie, Evin, and Alex), the wife and sons of the late Brian Gerofsky share their heartfelt feelings about Brian. Debbie and her sons talk about living with CF in the family unit and share their fond memories of Brian.

-    Debbie was married to Brian for 26 years and has 2 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”, states Debbie. Brian always called Debbie his soul mate 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 and did not let it stop us from LIVING!” states Debbie.

-    The Gerofsky family did a lot together and enjoyed the beach, museums, music, dance, and Broadway shows. The family meant everything to Brian and he believed in hard work and LIVE YOUR LIFE!

-    Debbie, Evin, and Alex believe that the most important thing in a family dealing with CF is; “open communication and to respect each others 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” states Evin and Alex.

-    Brian passed away from cystic fibrosis in May 2009 at age 57.

-    Although Brian is gone his memories live on…

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 6th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: GerofskyWEBFILE.m4v
Category: Vidcast -- posted at: 3:28 PM
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Title: Episode #0083 Kevin McCrea – Exercise for Clear Lungs

Kevin McCrea, 18 years old with cystic fibrosis, living Washington and loving life. Kevin is involved in many sports, and enjoys spending time with family and friends.  Attending Washington State University, Kevin believes in “shaking up the lungs and clearing them out” through vigorous sports.

-    Kevin was diagnosed 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 & field (4 years), basketball (2 years), and football (1 year). Sports was a social event and has made a major impact on my health” states Kevin.

-    Kevin’s training in basketball and track & field was 2 hours 6 days/week and the running and jumping makes 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 that 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”, believes Kevin.

-    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”, Patrick’s advice to others with CF thinking about college.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 5th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: KevinMcCrea.mp3
Category: podcasts -- posted at: 7:05 PM
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Episode #0082 Philip Stevanovic – CF Related Diabetes (CFRD)

Philip Stevanovic, 36 years old with cystic fibrosis and diabetes, living in New York, 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 2 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, Middle East, and Yugoslavia,” states Phil.
-    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,” according to Phil.
-    “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,” states Phil.
-    “Since I started insulin treatment for my CFRD I have gained weight, which is something I could never do with CF,” states Phil.
-    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 other 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: PhilStevanovich.MP3
Category: podcasts -- posted at: 3:09 PM
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Title: Patrick Newman – Gearing Up for College with CF

Patrick Newman, 18 years old with cystic fibrosis, living in Missouri. Patrick is playing sports, enjoying friends and family, and gearing up for college.  Attending University of Missouri in the fall, Patrick 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”, states Patrick.
-    “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 ”, states Patrick.
-    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”, states Patrick.
-    The biggest challenge that 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!”
-    “Step it up! Get out there and live and do not alienate yourself”, Patrick’s advice to others with CF thinking about college.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 3rd in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: PatrickRamsey.mp3
Category: podcasts -- posted at: 5:13 PM
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Title: Victor Roggli – Succeeding in the Career World with CF
Victor Roggli, 58 years old with cystic fibrosis, living in North Carolina, married with a family, and working 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 SUCCEEDING with CF, the career world, and life!
-    Victor was born in Winchester, Tennessee on a farm and 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” states Victor.
-    Victor attended Rice University where he majored in Bio Chemistry and then attended medical school at Baylor in Houston, Texas.
-    “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…” states Victor.
-    Victor now believes in being open about his CF and does his aerosol therapies at work. “With the American Disabilities Act people cannot discriminate”
-    “Know your limitations with CF and be realistic in what you do in the career world,” states Victor.
-    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 adopt to CF, let it adopt to you…”
This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 2nd in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: VictorRoggli.MP3
Category: podcasts -- posted at: 4:52 PM
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Title: Chad Brown Believes in Laps for Life with Cystic Fibrosis

Chad Brown, 27 years old with cystic fibrosis, living in Seattle Washington, took his FEV1’s from 29% to 58% through the power of swimming. Chad 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, is LIVING BREATHING SUCCEEDING LIVING on a daily basis.

- Chad was born in Tennessee and 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,” states Chad.

- Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people like myself 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!” states Chad.

- Chad is pursuing a college degree in engineering, working over 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good…”

- 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: ChadBrownInterviewb.m4v
Category: podcasts -- posted at: 10:27 AM
Comments[1]

Title: Chad Brown Believes in Laps for Life with Cystic Fibrosis

Chad Brown, 27 years old with cystic fibrosis, living in Seattle Washington, took his FEV1’s from 29% to 58% through the power of swimming. Chad 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, is LIVING BREATHING SUCCEEDING LIVING on a daily basis.

- Chad was born in Tennessee and 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,” states Chad.

- Insurance issues forced Chad to move to the state of Washington. “Washington has a user friendly state insurance program for people like myself 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!” states Chad.

- Chad is pursuing a college degree in engineering, working over 30 hours a week to support himself, involved in a great relationship and looking forward to marriage and starting a family. “Life is good…”

- 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 and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: ChadBrownInterview.mov
Category: podcasts -- posted at: 3:32 PM
Comments[0]

Title: Episode #0078 CF Travel Tips - Isabel Stenzel Byrnes

Isabel Stenzel Byrnes, 37 years old with cystic fibrosis living in Northern California, a wanderlust, and post transplant 5 years, and co-author with her sister Anabel of the book The Power of Two (www.stenzeltwins.com). Isabel has worked as a social worker and health educator and is LIVING BREATHING SUCCEEDING on a daily basis.
Isabel, along with her twin sister Anabel and family, has traveled the world visiting 12 foreign countries and 41 states in the USA. Isabel started traveling at age 8 and has also 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 college from the 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 hands a lot, drink lots of water, and ALWAYS carry-on my medications” states Isabel.
- Post transplant Isabel continues to travel and has added a mask during airplane travel.
- “I have lived a very privileged life and CF had taught me to be very disciplined and everyone with CF is a mentor to me,” states Isabel.
- Isabel’s advice; “Do not limit yourself and allow yourself to dream…”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the final of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

The Power of Two
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.

More details
The Power of Two: A Twin Triumph Over Cystic Fibrosis
By Isabel Stenzel Byrnes, Anabel Stenzel
Edition: illustrated
Published by University of Missouri Press, 2007
ISBN 0826217540, 9780826217547
280 pages

The Power of Two - To Order Click Here

 

Direct download: CF-TravelTips.mp3
Category: podcasts -- posted at: 7:32 PM
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