54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis

“Comfort With Your Feeding Tube”

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.

Direct download: Own_Your_Feeding_Tube_-_Gunnar_Esiason_-_Episode_4.mp4
Category:podcasts -- posted at: 7:00 PM

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.

ï      He grew up extremely active – playing basketball, baseball, and swimming.

ï      His doctors encouraged his parents to treat him the same as their other children.

ï      From a young age, he learned to be not only medically compliant but also stick to an active lifestyle.

ï      Now 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. 

Direct download: sullivan_mixdown.mp3
Category:podcasts -- posted at: 2:33 PM

“What Can I expect From My New Feeding Tube?”

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.

Category:general -- posted at: 7:48 PM

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. 

Direct download: McNulty_mixdown.mp3
Category:podcasts -- posted at: 4:54 PM

CF Podcast 148: Never Giving Up with CF

 

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. 

Direct download: ChrisPeacock.mp3
Category:podcasts -- posted at: 7:00 PM

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.

Direct download: Own_Your_Feeding_Tube_-_Gunnar_Esiason_-_Episode_1.mp4
Category:general -- posted at: 2:24 PM

Jonny Simpson

Managing a Career with Cystic Fibrosis

 

Today, you will meet Jonny Simpson, who is living, breathing, and succeeding with cystic fibrosis. 

- 28 years old

- From Penrith, Cumbria, UK

- His hobbies include bodybuilding, literature, and music.

- He is one of four boys. 

- He works in sports marketing and also personal training. 

 

 

This podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation. 

Direct download: johnnysimpson.mp3
Category:podcasts -- posted at: 5:00 PM

Meet Gary Reay - a 26 year old who grew up in Ireland with cystic fibrosis. 

 

- He plays soccer and boxes - generally trying to get to the gym at least 4 days a week with his friends - and also loves music and DJing. 

 

- After 19 years without an extended stay at the doctor's, Gary fell ill and was hospitalized for 6 weeks. 

- During that time, he lost a great deal of weight - leading him to the decision to get a feeding tube. 

 

- He uses his feeding tube every night and has seen a major change in his ability to retain weight and has much higher energy levels. 

 

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

Direct download: GaryReay_FeedingTube.mp3
Category:podcasts -- posted at: 4:35 PM

Tim Wotton – Show Notes 

 

CF Podcast 145: Being a Father with CF

Tim Wotton 

 

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”
Direct download: TimWooton_mixdown.mp3
Category:podcasts -- posted at: 4:10 PM

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.

Direct download: BEF_Brian_W_Podcast_FINAL_YouTube.mp4
Category:general -- posted at: 1:54 PM

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