Gunnar Gunnar Esiason

All articles by Gunnar

 

What I Want (and Need) From My Support System

I know I am incredibly fortunate to have such a great support system behind me. It is not a universal trait, but I think it’s something that all people with CF deserve. I hold my support system to a very high standard. I have a short fuse for people in my life who are generally...
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Navigating Disabilities Services and Transitioning to College

Last week I blogged about applying to college, but what happens when you get in? The short answer… a lot. You likely have experience with the disabilities process throughout high school and standardized testing via a 504 plan, but college can be a different animal entirely. Most universities have a disabilities office, which serves to...
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Breathe In Ep. #83 – CF Yogi

Chelsea Spruance rejoins the podcast along with Katie Malik, executive director of CF Yogi, to talk about their organization’s free virtual yoga classes for the CF community! Katie talks about the origins of CF Yogi, and where it’s headed thanks to a grant from the Boomer Esiason Foundation. Gunnar shares that he went to his...
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Applying to School? Own Your Cystic Fibrosis

I think it’s quite common for kids with cystic fibrosis to dedicate part of their college applications to their lives with CF. I think it’s a great subtopic because it’s who we are! So, as the next wave of kids with cystic fibrosis closes up their junior years of high school, prepares for senior year...
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Address the Unseen Scars: Mental Health and Cystic Fibrosis

I am reblogging this article that I wrote for Emily’s Entourage, which originally appeared HERE. What is Emily’s Entourage? “Emily’s Entourage accelerates research and drug development for nonsense mutations of Cystic Fibrosis. By providing critical leadership and coordination, Emily’s Entourage drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. [Their] goal...
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Breathe In Ep. #82 – The College Days & CF and Pregnancy

As May comes to a close, Breathe In wraps up CF Awareness Month with two final sprint interviews. Lise-Courtney D’Amico rejoins the podcast to chat with Gunnar about how their college experiences differed despite going to the same university – Boston College. They also talk about their next chapters in life as both Gunnar and...
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Parents, It’s Okay to Let Your Kid Grow Up

Shifting age appropriate responsibilities from the parent to the child always seems to be a difficult task for cystic fibrosis families. It’s a slow methodical process that seems to work at a snail’s pace. I think it’s due in large part to the dreaded drop that many young adults are forecasted to face. This week...
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Breathe In Ep. #81 – Marriage & CF, and Different Ways of Coping with CF

Gunnar and Tiffany continue May with another week of spring interviews! Tiffany talks with Tyler Smith, 23, who is living with cystic fibrosis and almost a year out from his double lung transplant, Tyler talks about his life growing up with CF and how sport was something that kept him healthy. He played golf and...
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The 5 Greatest Achievements in Cystic Fibrosis

The story of cystic fibrosis is quickly becoming one of the greatest success stories in medical history. That is a hell of a statement given not so long ago, a lot of what we have today would have only been a mere pipedream. We still have a long way to go, but if the recent...
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My Message to the St. Louis University School of Medicine Class of 2019: Listen to Your Patients!

This past weekend I was honored to deliver the 2019 St. Louis University School of Medicine Pre-Commencement address. My very first pediatric doctor at Cincinnati Children’s Hospital, Robert Wilmott MD, is now the acting dean at the SLU School of Medicine and extended the invite to me not long ago. I so very much appreciate...
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Family Building Friday: The Corr Family – Two Children with CF

I was one of those children who when asked what they wanted to be when they grew up said a mommy. I wanted three children from pretty much day one. When I had my second baby I couldn’t have been happier. I remember so clearly nearly 25 years ago now walking down the street with...
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Breathe In Ep. #80 – Living Donor Transplant, Lifelong Friends

Breathe In features two more interviews this week as we continue charging through CF Awareness Month. Danielle Mandella, 32 with CF, joins Gunnar to talk about her very unique path through transplant. As one of the very few people with cystic fibrosis to have ever received a living donor lobe transplant, in lieu of a...
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Paul Widmeyer: A Life Changing Relationship

Today we have a very special guest post from Paul Widmeyer, boyfriend of the late Lea Faraone. On December 13, 2018, I lost my soulmate, best friend, and hero – Lea Faraone. In the months gone by, the question I sense her wanting me to answer is, was it all worth it? Knowing she had...
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Breathe In Ep. #79 – Straight From the Lungs, Priceless Breaths

In keeping with the theme for May, Breathe In features two interviews this week! Gunnar chats with Will Marler, 24 with cystic fibrosis from the UK. Will is the producer of ‘Straight From the Lungs’ podcast, which features Gunnar and 22 other people with cystic fibrosis! Will talks about the project, which began in 2016,...
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My New Fitness Journey: Orangetheory

If you remember way back (like a year and a half ago) I did the Couch-to-5k running program to improve my airway clearance. I hated running, but I did it anyway because I wanted to feel better! I wrote about it to keep it me consistent, and because I wanted to invite YOU to join...
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Today I Checked My Measles Immunity Because of Selfish #AntiVaxxers

I was a senior in college when I learned that, while incredibly unlikely, the vaccines we received when we were children can wear off. Why did I learn that weird fact, you may ask? Well, because we had a mumps outbreak at Boston College, and one of my friends learned the hard way that she...
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Getting Comfortable with a New CF Clinic

All throughout my life, I have sought CF care from a number of clinics simply because I have lived in a bunch of different places. Experience tells me that transitioning from clinic to clinic is equal parts awkward, uneasy, exciting, refreshing and hopeful. When I was little, I started my CF journey at Cincinnati Children’s...
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Breathe In Ep. #78 – The Salty Yogi, Physical Therapy for CF

It’s May… CF Awareness Month! Throughout the entire month, Breathe In will be featuring several people with CF or people who play a role in improving patient health and wellness in each episode. This week’s episode features Chelsea Spruance, 26 with cystic fibrosis, and Karen von Berg, a physical therapist at Johns Hopkins who works...
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Tiffany Rich: Hey Cyster!

Tiffany Rich writes a response to my blog post that appeared on the site last week! Last week Gunnar wrote a blog post following our Buy or Sell podcast! We had the topic of labels; CFer, cyster, and fibro vs person with CF, and, of course, Gunnar and I find ourselves on opposite sides of...
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We’re Expanding BEF Scholarship Eligibility Criteria!

In 2018 we awarded over $400,000 total in scholarships to almost 100 students! That mark has been our annual goal for a while, and it will continue to be for years to come. As the cystic fibrosis population ages, though, our scholarship program must adapt! People with CF are truly living longer than ever, and...
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Stop Calling Me a “Fibro”

Today, folks, we’re going to talk about labels and why they’re bad.  The terms “fibro” “cyster” and “CFer” are all labels that get tossed around the CF community. I don’t like them. In fact, I feel second hand embarrassment when someone uses any of the above to describe other people with CF. In a world...
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Breathe In Ep. #77 – Buy or Sell: Person with CF vs. CFer, Cyster/Fibro, CFRD, and more

Marge Carfora is back with the Breathe In duo for her the final episode of her April residency. This time the group tackles a Buy or Sell episode. Slippers vs Socks in the hospital, CFer vs person with CF, a debate over the use of Cyster/Fibro, CFRD topics, mobile vests, mobile nebuilzers, nebulizer cups and...
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‘Salt in My Soul,’ Mallory Smith Says What All of Us Are Thinking

Salt in My Soul is a powerful, heartbreaking and inspiring look at Mallory Smith’s life. There are some spoilers ahead, so use this as a warning. She was a brilliant writer who embodied everything it means to live a shortened life to the absolute fullest. She managed to live independently, hold a job, have a...
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How Do I Stay Motivated?

I often get asked, “How do you stay so motivated?” The answer is always the same, my health. My health is my ultimate motivator. I can do the things I want to do when I’m healthy, and I can’t do the things I want to do when I am sick. Simple enough, right? The answer...
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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...
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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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Breathe In Ep. #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,...
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Pharmacy Benefit Managers In the Spotlight

I am not someone to speak highly of our federal government, regardless of who is in power, but I don’t think I have ever felt so proud of our elected officials. Yesterday, the Senate Finance Committee, in a bipartisan effort, led by chairman Chuck Grassley (R-Iowa) and ranking member Ron Wyden (D-Oregon) called executives from...
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I Am Going Back to School!

I am going back to school, and it’s just starting to feel like real life. Within the past couple of weeks I was accepted into the MBA program at the Tuck School of Business at Dartmouth and the MPH (Masters of Public Health) program at The Dartmouth Institute For Health Policy and Clinical Practice. As...
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Breathe In Ep. #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...
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Jack Goodwin: The Handbook For How To Date Someone With CF

You might have heard of my late girlfriend, Mallory Smith. A frequent contributor to the CF community, Mallory was a blogger, podcaster, radio producer and more recently author of Salt in my Soul: An Unfinished Life, by Mallory Smith, published posthumously by Penguin Random House on March 12th. She passed away in November of 2017...
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Cystic Fibrosis March Madness – The Finals Voting

Here we are… The Finals. It’s been a hard fought tournament, but it all comes down to this. Both of our contenders have swept through their matchups, so I think it’s fair to say we have two top dogs facing off. Believe it or not, You don’t look sick! is making its second consecutive appearance in the...
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Cystic Fibrosis March Madness – The Cystic Fibrosis Four Voting

Here we are… championship weekend Monday and Tuesday! We’re starting off with the Cystic Fibrosis Four! The final four teams who have made it to the very end. The regional champions! Coming out of the Questions region, we have the #7 seed, Is it like asthma taking on the #5 seed, Maybe you should stop smoking out of the Recommendations region. Over on the...
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Cystic Fibrosis March Madness – Electrolyte Eight Voting

It’s time to find those regional champions as we head into the Electrolyte Eight! We still have two #1 seeds in the mix. Up to this point we are yet to find a real tight one. I want a single digit spread in this round! Let’s get to the polls! Remmeber, you can vote below...
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Family Building Friday: The Randazzo-Parrott Family, Pregnancy and CFTR Modulators

I always hoped I would become a mother one day but never allowed myself to get my hopes up in fear of it not happening. When I was six years old my parents received the diagnosis that both of my younger brothers and I had cystic fibrosis. Our lives changed forever as we entered the...
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Breathe In Ep. #73 – Cross Country Friendship

With Tiffany out this week, Gunnar is joined by Lise-Courtney D’Amico, 25 with cystic fibrosis from New York City, and Stacy Carmona, 32 with cystic fibrosis from Orange County, California. Lise-Courtney and Stacy were connected via Cystic Fibrosis Foundation CF Peer Connect, which pairs two people with CF in a one-to-one peer mentoring program. Stacy...
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I Was the Victim of a Catastrophic Feeding Tube Failure

via GIPHY In the wee hours of last night, my feeding tube bag ripped. In my 9 years of using a feeding tube, I have never had a bag rip, but last night I did. Quite frankly, I didn’t even know the bag could rip. I guess you can call me naïve. The rip resulted...
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Cystic Fibrosis March Madness – Salty Sixteen Voting

The Salty Sixteen is here! I can’t say the same for two of our #1 seeds. That’s right, Have you tried essential oils? and Will she grow out of it? were sent packing after only the second round! We had two tight matches last round, too! Have you tried cutting dairy from your diet? lost by 20 votes to Have you tried...
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Cystic Fibrosis March Madness – Round 2 Voting

Round 1 is in the books! Just about all of our “games” were one sided affairs believe it or not! Our closest matchup was found in the recommendations regions – #14 Have you tried seeing if marijuana works? vs. #3 Have you tried going gluten free? Gluten free came out on top by a margin of just 13...
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Cystic Fibrosis March Madness – Round 1 Voting

Cystic Fibrosis March Madness is back! Join the fun and help vote your favorite “team” to glory. This year we are searching for The Most SMH thing someone has said to you about your CF! We have broken the teams into four regions – QUESTIONS, RECOMMENDATIONS, STATEMENTS, and THINGS SAID TO PARENTS, PARTNERS AND FRIENDS. We...
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Breathe In Ep. #72 – 2019 Cystic Fibrosis March Madness Bracket

The Cystic Fibrosis March Madness Bracket is back by popular demand. This year 64 ‘teams’ will battle it out to claim the tile of “The most SMH thing someone has said to you about CF.” Colleen Lewis, 33 with cystic fibrosis, joins the podcast this “Selection Thursday” episode. The bracket breaks down into four regions...
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Announcing the Lea Faraone Memorial Scholarship

Last week at a Boomer Esiason Foundation event, we announced the creation of the Lea Faraone Memorial Scholarship for students with cystic fibrosis who want to study abroad! Lea loved to travel and try new things, so we think supporting students who want to study abroad is a great fit for a scholarship in her...
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Monday Morning Thoughts: College Admissions Scandal Exploits Disabilities, Flying with Disabilities

It’s been awhile since we have talked about the importance of the Americans with Disabilities Act, how we can invoke it and why it is so important we preserve its purpose. College Admissions Scandal Exploits Disabilities The big story barreling through the news cycle is the so-called college admissions scandal where a number of people,...
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Breathe In Ep. #71 – Response to Five Feet Apart’s Insensitive PR Campaign

Aubrey Kostelec, 22 with cystic fibrosis, joins Gunnar and Tiffany for an emergency live podcast following a crazy day within the cystic fibrosis community after it was discovered Five Feet Apart launched an insensitive ad campaign relating cystic fibrosis to general lifestyle inconveniences. The patient community has railed to demand a public apology from the...
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Bizarre ‘Five Feet Apart’ Ad Campaign Compares Inconveniences to Living with Cystic Fibrosis

UPDATE  (3/12/19) 4:30PM: The “video” advertisement discussed below, which was regrammed to @Breathe_In_Pod, was reported and then subsequently removed from Instagram. It’s a real shame because there was a constructive discourse in the comment sections between people living with cystic fibrosis. We’ve also been made aware some influencers commented apologies on the posts in question,...
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Family Building Friday: The Woodruff Family, Surrogacy

John and I met in 1990. Yes, 1990, in Ms. Hairston’s kindergarten class. After one year of school together, I switched schools and we wound up in different grades. I remember seeing John around town, but we never spoke again until after college in a NYC bar where he came over to talk to me....
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Breathe In Ep. #70 – Controlling Your Care, Folia Health

Breathe In is coming at you with a new style of podcast, this week we are introducing “segments.” The first half of the podcast includes Gunnar and Tiffany talking about how they are able to make medical decisions, and control conversations inside the clinic. They lean on information coming from care providers, while also balancing...
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New Triple Combo Data Released! What We Know?

If you were up bright and early this morning, you saw Vertex released limited results from their VX-445 clinical study stating the trial achieved it’s primary endpoint, and showing significant improvement in FEV1 at the 4 week mark in people with one copy of F508del and people who are homozygous F508del. If you recall, Vertex has TWO...
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Don’t Fall Victim To Aggressive Marketing Campaigns, Reusable Masks Are NOT Appropriate for Cystic Fibrosis Patients

Alright, folks, here we are again… talking about respirators. Think of this as a gentle reminder…. Reusable respirators are NOT suitable for people living with cystic fibrosis. I’d like to think we’re beyond this, but the question does come up quite frequently. Unfortunately, I don’t think our care providers do a great job of explaining...
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