Gunnar Gunnar Esiason

All articles by Gunnar

 

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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Monday Morning Thoughts: How I Learned to Learn From Failure

It was 2009. I was on my own for the very first time in my life as a freshman at Boston College. The natural growing pains of learning how to cope with cystic fibrosis in a place away from home were…complex. I had to learn how to develop a routine, and stick to it. I...
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Family Building Friday: The Albright Family, Adoption

It was very clear to me early on that I wanted to be a father. The imprint was so strong that when I was diagnosed with CF at 15 my most salient concern was not that I had just found out that I had a shorter life span, but that I couldn’t have children. When...
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Breathe In Ep. #69 – Molly Pam, Cystic Fibrosis Reproductive and Sexual Health Collaborative

Molly Pam, 30 with cystic fibrosis, joins the podcast all the way from Israel. Molly talks about living abroad with cystic fibrosis (and studying abroad as a college study) with low lung function. She also takes Gunnar and Tiffany through the Cystic Fibrosis Reproductive and Sexual Health Collaborative’s (CFReSHC) upcoming projects and initiatives, including a...
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Five Feet Apart Book Review (From a Person Living With Cystic Fibrosis)

If you listened to the podcast last week, you’d know I read Five Feet Apart about a month ago. Believe it or not, there were points of the story that I did appreciate, but on the whole, it read like a hastily written novelization of a screenplay with weak characters. Allow me, for a moment,...
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In Case of Emergency

Let’s talk about medical alert tags. I wanted to get one for a while, but never got around to it until Darcy decided to take it upon herself to get one for me. She got me one in the style a dog tag for Christmas. If you didn’t already know, I’m a big Top Gun...
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Breathe In Ep. #68 – Five Feet Apart Lead Up

Morgan Gindstaff, 28 with cystic fibrosis, and Caitlin Lombardi, 23 with cystic fibrosis, join Gunnar and Tiffany on the podcast this week for a friendly debate over the pros and cons of the forthcoming movie, Five Feet Apart. The lead in to the movie and the PR campaign around it have been polarizing, where some...
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Family Building Friday: The Carfora Family, Surrogacy, IVF/PGD

My husband, Jimmy, and I knew that we wanted to have children very early into our relationship and discussed how our family would come to existence at length. I have cystic fibrosis and I was four years post bilateral lung transplant when Jimmy and I started dating. Quickly into our relationship, I experienced some serious...
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Living With Cystic Fibrosis Gives Me Unique Skills, Here’s How I Leverage Them

Living with a chronic illness has value. The responsibility of care for CF is both active and arduous, and the condition’s aggressiveness is often debilitating, until it runs a person’s life into the ground. Despite that, though, the illness has also shaped me, hardened me and forced me to be in a constant state of...
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Setting a New Goal, 1 Year and 3 Days

A couple weeks ago I wrote about making it through a calendar year without needing to go on IVs for the first time in close to 15 years. Well… that streak was snapped a few days later. No, I didn’t jinx it and no I didn’t bring it upon myself. I had been fighting a...
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Monday Morning Thoughts: Welcome To The Team, Phages

It’s a holiday today, (which… does anyone else think it’s kind of weird that we celebrate the executive office of the federal government, especially since our entire existence as a nation is predicated on the idea that no single person should wield too much power?), so that means you get a quick Monday Morning thoughts....
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Family Building Friday: The Walker Family, Pregnancy and CF

Adam and I met the summer before my freshman year in high school and briefly dated for a few months that fall. We ended up breaking up but remained friends throughout the years. When I graduated from high school we crossed paths and started to date again and 6 years later Adam proposed and we...
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Breathe In Ep. #67 – Valentine’s Day

Two very special guests join the podcast this week, Gunnar’s girlfriend Darcy and Tiffany’s boyfriend, Jeff! Leading into the episode the duo asked the Instagram community to direct the conversation, so rather than repetitive about, “how to tell someone new about CF,” the chat turns towards diving into some of the guilt people with CF...
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A Little Poetry For Valentine’s Day

Inspired by the #HealthPolicyValentines tag, I wanted to give a shot at #CysticFibrosisValentines… Post your love letters, memes or poetry in the comments!   Roses are red Violets are blue Sugar is sweet CFRD is too   Roses are red Violets are Blue If you miss my vein I’ll stick you   Patients patients everywhere!...
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Monday Morning Thoughts: A Kind Message to the Anti-Vaxxer Movement Responsible for the Latest Measles Outbreak

What a time to be alive! Extinct illnesses are BACK. What a time to be alive, indeed. In fact, it’s quite depressing that here we are, discussing the selfishness of people who refuse to vaccinate their kids in response to a mythical fear. It’s equally depressing for all of us to feel the need to...
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Family Building Friday: The Neville Family, IVF/PGD

Megan Neville takes us through the IVF/PGD process. Our firstborn son Aidan was diagnosed with CF through newborn screening at 8 days old. The initial shock and devastation was overwhelming. I could not believe that this perfect looking baby we created out of love was facing this awful disease. As we learned the realities of...
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Breathe In Ep. #66 – Lung Story Short

Gunnar is back on the podcast after his voice has finally recovered! Rima Manomaitis (also known as @Lung_Story_Short on Instagram) joins Gunnar and Tiffany for a Feeding Tube Awareness week podcast. Rima takes the podcast through her double lung transplant process, talks about moving halfway across the country despite failing health and notes that she’s had...
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Darcy’s Blog: I Love Gunnar’s Feeding Tube

Gunnar asked me to write a blog for #feedingtubeawarenessweek, and since I mostly write about CF as it relates to dating/relationships, I thought it would make sense for me to write about how feeding tube stigma might impact dating and relationships. The thing is, I can’t, because I love his feeding tube!! Allow me to...
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Myra Giaffoglione: How Yoga Can Help our CF Families

My friends over at CF Yogi wanted to talk a little bit about what they’re doing to get the CF community up and moving! I’ll let Myra take it away… My name is Myra Giaffoglione, and I’m a parent of two young children with cystic fibrosis. My journey as a CF caregiver has developed right...
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Catya Kurban: To My Sweet Lea Marie

To my sweet Lea Marie, It’s been almost a month and a half since you gained your wings, but that also means you have been pain-free and breathing easy for a month and a half too. I went to see a CF psychologist a couple weeks ago to talk through some of my anxiety and...
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Monday Morning Thoughts: Overcoming Fear

Happy #FeedingTubeAwarenessWeek to all my tubies out there! Whenever I write about my feeding tube, I generally talk about how amazing it has been for me. My g-tube has helped me accomplish so much, and for that reason it’s always easy to write about. I want to kick off Feeding Tube Awareness Week with something...
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Family Building Fridays: The Bell Family, IVF

My wife, Megan, and I always knew we wanted kids. We also knew it wasn’t going to be easy. We knew there was going to have to be medical intervention—and we were OK with that. We’d known for quite some time that IVF was going to be our route. That’s the beauty of science. It...
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