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

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Cystic Fibrosis Podcast

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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Title: Episode #0077 Julie Desch - Nutrition and CF
Julie Desch, 48 years old with cystic fibrosis living in Northern California, single mom with 2 fabulous children and works from home running a non-profit – New Day Wellness (www.newdaywell.org), and LIVING BREATHING SUCCEEDING LIVING on a daily basis…

Julie has realized the benefits of nutrition and exercise and at New Day Wellness Julie coach’s nutrition, fitness, stress management, and disease management to people with chronic illness – many with CF.
- Julie was born in Nebraska, diagnosed at birth; the youngest of 7 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”, states Julie.
- Julie’s “junk” foods include; pretzels, yogurt, frosted mini wheat’s 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”, states Julie.
- 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…” states Julie
- Gaining weight… “Get involved in exercise and especially weight training and eat a lot”, believes Julie
- Julie’s advice to others… “hope… and be compliant and aggressive to keep your lungs clear”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 11th of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: Julie-Nutrition2.mp3
Category: podcasts -- posted at: 2:39 PM
Comments[1]

Title: Episode #0076 Paul Drury - Giving Back to the CF Community
Paul Drury, 42 years old with cystic fibrosis, happily married, working for the Cystic Fibrosis Foundation (Connecticut Chapter), a mentor to the CF community, post lung and kidney transplant, and LIVING BREATHING SUCCEEDING LIVING 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 fundraising and speaking to many people with CF on a daily basis.

- Paul was born in Chicago, diagnosed at age 2 due to “failure to thrive”, grew up in Connecticut, attended the University of Connecticut, and is one of six children.
- “Growing up with CF was a very private matter and I jumped in to the world of CF post transplant”, states Paul.
- Paul believes; “Working for the Cystic Fibrosis Foundation let’s me give back to others and have a major impact on their life by giving them HOPE... and it makes me feel good”.
- Paul gives back at the CFF by doing fundraising for a cure, speaking at events to raise awareness, speaks to families and patients on a daily basis; “ I am like the poster adult for the CF community”, states Paul.
- Paul is also 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 med.’s, exercise, nutrition, and sometimes laughter is the best medicine”.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 10th of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: PaulDrury-GivingBack2.MP3
Category: podcasts -- posted at: 2:28 PM
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Title: Episode #0075 Living with CF is All about Teamwork

Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior, 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 2 and resides in Long Island with his family.
- “CF has obviously shaped my life but does not get in the way of me being a normal teenager,” states Gunnar.
- Gunnar, like being on a football team, 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,” states Gunnar.
- “Besides my medical team, my family and friends are also a big part of my team and the more they know about me the better they can help and I can win the battle with CF,” states Gunnar.
- 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.

Direct download: Gunnar-Teamwork.mp3
Category: podcasts -- posted at: 3:08 PM
Comments[1]

Title: Episode #0074 Pre-Transplant – Gearing Up for New Beginnings
Jerry Cahill, 52 years old, Living Breathing Succeeding with cystic fibrosis 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. Attended the University of Connecticut, competed in track & field specializing in the pole vault, worked in the apparel industry for 26 years, coach’s track & field, and currently 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…” states Jerry
- “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…” Jerry believes.
- Jerry believes that 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 & friends, FUNDRAISE, and gear up for NEW BEGINNINGS as the best is yet to come…”


This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast series is the 9th in a series of 12 made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Direct download: PreTransplant.mp3
Category: podcasts -- posted at: 3:52 PM
Comments[1]

Title: Episode #0073 Better Living Through Nutrition – Power Up the Body
Gunnar Esiason, 17 years old with cystic fibrosis (CF), high school senior, actively involved in sports, being compliant, and gearing up for college
- Gunnar was diagnosed at age 2 and resides in Long Island with his family.
- “CF has obviously shaped my life but I am fortunate to have a great family and friends” states Gunnar.
- Gunnar loves to eat and 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 stomach aches and that is very uncomfortable” states Gunnar.
- Gunnar keeps his enzymes in a pillbox and always carries them in his pocket or backpack.
- “I usually try and have 4 meals a day and snacks between meals and make sure that I have a lot of OPTIONS with my food choices. I also make milkshakes to get extra calories”. States Gunnar
- Gunnar’s advice to others with CF on nutrition… “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” states Gunnar.

This podcast was made possible through and unrestricted educational grant from EURAND to The Boomer Esiason Foundation.

Direct download: Gunnar-Nutrition.mp3
Category: podcasts -- posted at: 8:24 PM
Comments[1]

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.

Direct download: DonnaDorsett.MP3
Category: podcasts -- posted at: 4:09 PM
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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.
 

Direct download: Gunnar_Interview2.MP3
Category: podcasts -- posted at: 5:04 PM
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