"I want to use this blog to share some of my experiences so that hopefully when you, whoever you are, read this you can see the world as I see it. You can appreciate life as a whole. I want you to laugh and have fun while you read, I do not want you to feel sorry for me, or feel like the world is some cruel unfair place. The truth of the matter is that I was dealt a certain hand of cards, and I am making the best of it."
Recent Podcasts
Breathe In #76 - Medical Bills, Paying for Transplant, COTA
Breathe In features a segmented podcast this week! In the first part, Marge Carfora, who is back for another episode, Gunnar and Tiffany talk about medical expenses, co-pay assistance and assistance programs they use to make living with cystic fibrosis more affordable. Tiffany and Marge, specifically, reminisce on the coverage requirements leading up to their transplants. Marge mentions that although her father had a good insruance plan for the family since he was a firefighter, there was significant financial strain given that she, her mom and sister had to relocate half way across the country so that she could get listed for transplant. Tiffany mentions that she worked with Children's Organ Transplant Association (COTA) to help crowd fund for her transplant. In the second part of the podcast, Tiffany talks with COTA CEO, Rick Lofgren about fundraising for transplants and how people with cystic fibrosis might apply!
Breathe In #75 - Receiving a Double Lung Transplant and Surviving Cancer
To honor Organ Donation Awareness Month, Marge Carfora, 36 with cystic fibrosis and 14 years post double lung transplant, joins the podcast as the first ever resident guest host! Marge will feature on all the podcasts airing in the month of April. This episode tells most of Marge's life story, from diagnosis right after birth, through college, a double lung transplant in a time before the Lung Allocation Score, marriage, surviving three different types of cancer - Posttransplant lymphoproliferative disease (PTLD), cervical cancer and breast cancer - and finally becoming a mother to twins! Marge talks about overcoming each obstacle, one at a time and using her attitude as the ultimate force driving her through each complication.
Breathe In #74 - 2019 Bracket Champion, Interview with Steve Hall
Steve Hall, 30 with cystic fibrosis from the DC area, joins the podcast to talk about the March Madness Bracket experience and this year's champion. Tiffany also returns to the podcast after a week off. This year's Cystic Fibrosis March Madness Bracket was eye opening in a lot of ways, most notably with the way the "invisible illness" affects families as a whole. Gunnar, Tiffany and Steve talk about the voting trends, the demographic of the voters and why they think the March Madness exercise is important for the community. Ultimately, it's agreed that the Cystic Fibrosis March Madness Bracket is a safe space for people with CF and their families to come together to talk about some of the topics presented in the bracket.
Recent Posts
Breathe In Ep. #76 – Medical Bills, Paying for Transplant, COTA
Breathe In features a segmented podcast this week! In the first part, Marge Carfora, who is back for another episode, Gunnar and Tiffany talk about medical expenses, co-pay assistance and assistance programs they use to make living with cystic fibrosis more affordable. Tiffany and Marge, specifically, reminisce on the coverage requirements leading up to their
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Our Society Doesn’t Properly Value Patient Experience
How many times have you been asked to contribute to the greater good of your condition in the name of awareness? Awareness is a nice thing, but what does it achieve and are you selling yourself short? My answer is yes, you are selling yourself short, and awareness is another way of saying, “recognition.” You
The post Our Society Doesn’t Properly Value Patient Experience appeared first on Gunnar Esiason Blog.
Do You Have a Nonsense Mutation?
I guess a better question is…. Do you (or does your child) have a nonsense mutation? If the answer is yes – whether it’s a single nonsense mutation or a pair – the Patient Registry over at Emily’s Entourage (EE) is for you! Not to be confused with the Cystic Fibrosis Foundation’s Patient Registry, the
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