Gunnar Gunnar Esiason

All articles by Gunnar

 

Breathe In Ep. #61 – Holiday Season

Somer Lover is back on the podcast to talk about her open letter to family and friends about the holidays and cold/flu season. Gunnar, Tiffany and Somer chat about some of the precautions they take when it comes to health and safety during family gatherings and how they communicate their needs to their family and...
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Saying, “Well my doctor said…” Diminishes Your Role as an Empowered Patient

As empowered patients, it is our jobs to work with our care teams, not blindly take their word as fact. The very best doctors in CF are the ones who listen to their patients and create plans with them. I learned this lesson the hard way when I was in pediatrics. My final year as...
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Are Phages the Answer to Debilitating Cystic Fibrosis Infectious Disease?

Happy Monday, folks! It’s been a hot minute since we’ve had a Monday Morning Thoughts blog post, but shit happens. What can I say? Chronic infection is a killer in cystic fibrosis. It’s widely accepted that although infection rates are slowly decreasing across the community (maybe thanks to kids getting on CFTR modulators before their...
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Breathe In Ep. #60 – Tiffany’s 2nd Lungiversary

Tiffany’s lifelong best friend, Kelsey Sleek, joins the podcast to celebrate Tiffany’s 2nd lungiversary! On November 30, 2016, Tiffany was wheeled into the operating room for a life saving double lung transplant, and her life has changed for the better ever since. Kelsey talks about the support system side of cystic fibrosis and what it...
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You’re Right To Be Frustrated With Inpatient Care

Inpatient care is like the bane of my existence. I’ve landed myself in the slammer for a number of different reasons over the years – from emergencies, like flulike viruses and pancreatitis, to planned stays for observation. Each experience sheds a new light on the inadequacies of inpatient life for people living with cystic fibrosis....
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Darcy’s Blog: Chronic Illness Gift Guide

Darcy takes over the annual gift guide this year! Make sure you select the BOOMER ESIASON FOUNDATION if you’re using Amazon Smile. Amazon will donate a portion of their revenue from each Amazon Smile sale to BEF! Do you have a loved one on your holiday shopping list who has a chronic illness? This gift...
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Breathe In Ep. #59 – Miss Los Gatos 2019

Tiffany and Lea chat with Miss Los Gatos 2019, Camille Hunziker, a 22 year old pageant queen who has dedicated her time raising awareness for cystic fibrosis as a “Queen for a Cure.” The girls ask about how Camille got into pageants. She explains how the pageants work and how it’s been such a positive...
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Breathe In Ep. #58 – NYC Marathon, “Breathing on Everest”

Meredith Gaito, 26 with cystic fibrosis, joins the podcast to talk about her experience with running the NYC Marathon with Team Boomer just a few weeks ago! Meredith mentions that uses exercise and physical fitness as a way to actively treat her CF, she talks about her training routine and overcoming an infection in the...
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Demand an End to Accumulator Adjustment Programs and Federal Healthcare Anti-Kickback Laws

Believe it or not, drug manufacturers want us to use their medications. It’s how we get healthy, and it’s how they make money, which keeps them in the business of making medications for us. If that’s not a circular symbiotic relationship, then I don’t know what is. Of course, we don’t actually pay the drug...
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Breathe In Ep. #57 – “Five Feet Apart” Trailer Reaction

The trailer for “Five Feet Apart” dropped last weekend, so the trio shares their initial thoughts about cystic fibrosis on the Silver Screen. Gunnar has been outspoken about some of the issues he has with the film as seen through the lens of the trailer, from portraying people with CF as being consumed by death...
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Darcy’s Blog: When Do You Disclose CF on a Date

On Monday, I spoke about disease disclosure in very general terms as it may relate to someone’s health. Today, Darcy talks about disease disclosure within the context of dating. The #1 dating question I see in the cystic fibrosis community is, “When do I tell someone I’m dating about CF?” The conflict goes something like...
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Julia Rae: “FIVE FEET APART” IS A DANGEROUS MISREPRESENTATION

This article originally appeared on Julia Rae Unplugged and has been reposted with the author’s permission The trailer for “Five Feet Apart” was released on Friday.  Within a day, the Facebook clip alone has close to 4 million views.  Many people see that as a whole lot of great cystic fibrosis awareness. I challenge that.  Awareness that comes from...
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Monday Morning Thoughts: Is Disease Disclosure a Skill? Coughing, Farting, Feeling Sick

Disease disclosure is exactly what it sounds like – telling someone about your illness. We’ve spoken briefly about disease disclosure on here before, but I want to dive into it a little bit. One of the live-streamed sessions at NACFC called disease disclosure a “skill.” Mind you this was coming from someone on the care...
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Breathe In Ep. #56 – CFRD, Double Lung Retransplant

Amanda Varnes, 23 with cystic fibrosis, joins the podcast to talk about CFRD, double lung retransplantation and fungal infections. Amanda’s battle with CF has been nothing short of inspiring, and is clearly evident in her amazingly bubbly personality. Amanda contracted a pan-resistant fungal infection at an early age, which led to her first double lung...
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It’s Been Enormously Fun to Troll “Five Feet Apart” …and It’s Not Even Out Yet

Five Feet Apart is the forthcoming teen romance film attempting to do something positive for the cystic fibrosis community. The problem is…. we’re still trying to figure out what that “something” is. The damn movie isn’t even out yet and it’s already causing a divide in the CF world. It’s been a super hot button...
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Why I’m Worried about 1500 Cystic Fibrosis Patients in the US

Amy closes up her Drug Development Wednesday column with describing how people with CF who have Medicare without Medicaid, Low Income Subsidy, or another secondary insurance can wind up paying a substantial amount for CFTR Modulators. These folks are DENIED manufacturer co-pay assistance because of a long standing federal law The last two articles I spoke about...
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Monday Morning Thoughts: Why Does Our Culture Demand We Hide Our Chronic Illnesses?

It’s been awhile since we’ve had a Monday Morning Thoughts…. such is life. Welcome back to my stream of consciousness! I was updating my résumé over the weekend, something I like to do periodically, because YOU NEVER KNOW, and while I was doing it, I sort of had an existential moment. Why do we encourage...
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Breathe In Ep. #55 – Is 100% Treatment Compliance Possible?

Breathe In responds to my blog “It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise.” The blog ended up being quite divisive, so the trio seeks to know “why?” Lea, Tiffany and I agree that it is possible to compliant with our mediations 100% of the...
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Breathe In Ep’s #52, 53, & 54 – NACFC Series

Breathe In recorded THREE Live Episodes during the North American Cystic Fibrosis Conference (NACFC). See them below! Episode 52 Episode 53 Episode 54 Would you rather LISTEN than WATCH? That’s cool! SUBSCRIBE to Breathe In on iTunes HERE and then give us a review and rating! The podcast is now available on SoundCloud too!...
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Darcy’s Blog: How to Talk to Kids About Cystic Fibrosis

Darcy is back with her guest column to chat with you about talk to kids about CF! In the spirit of Halloween, please take note of the above picture of one of my first Halloween costumes from my childhood! This post is inspired by Megan Barker, founder of Project CF Spouse, who I was fortunate...
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What It Means to Partner With Patients and What Cystic Fibrosis Foundation Should Do About It: My Final Thoughts From NACFC

I LOVED tuning in to the North American Cystic Fibrosis Conference live stream this past week. It was amazing to be a fly on the wall listening to everything that’s going on in the world of cystic fibrosis, and not just the medical research! Some of the qualitative programs were just as impactful as the...
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NACFC Day 2 Recap: Inflammation, Pulmonary Exacerbations, and “Virtual Networking”

The early streams from day two in Denver were a bit science heavy, especially for a Friday, BUT this science affects us, so let’s go through it. Yesterday morning’s plenary about inflammation was a giant shift away from the constant stream of modulators that has been coming from NACFC over the past few years. We’ve...
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North American Cystic Fibrosis Conference Day 1 Recap & Podcast

It’s conference szn, people! If you caught our Facebook Live earlier, you might know that we are LIVING on the CF Foundation’s live stream this week. Following along with us HERE. To be clear, I am NOT at NACFC because I value my health. I’m not going to dive into the middle of that petri...
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Why Does The UK Put a Lower Value on The Life of a CF Patient Than The Rest of The World?

Amy is back with part two of her discussion concerning access for CFTR Modulators. Today we take a look at what’s preventing people with CF from gaining access to Orkambi in the United Kingdom I’m a DF508 heterozygote and therefore don’t have a CFTR modulator that will work for me (hopefully late 2019 it will...
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Use a Movie Title To Describe Your Last Bowel Movement

Standby for a poop blog! Yesterday I was at clinic for a routine visit, and part of that visit included a sonogram. Actually… believe it or not, October is Medical Ultrasound Awareness Month. Did you know that? I didn’t. Anywhoooo…I decided to make light of that part of my trip and play a little game....
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It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise

Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just so...
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Breathe In Ep. #51 – SEASON 2 – World Travel

Breathe In kicks off Season 2 with an episode dedicated to world travel. Lea just returned home a trip to Europe, while Gunnar is coming off a month and half worth of business trips. The trio recognizes that traveling with CF can be a stress point, especially because of packing and repacking medications before and...
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Darcy’s Blog: When Mental Health Issues Go Unnoticed

Happy #WorldMentalHealthDay!!! One of the best days of the year!! Gunnar likes to describe the three pillars of CF care as: Respiratory Care Gastrointestinal/Nutritional Care Mental Health Care If one of the three pillars are not being addressed, health as a whole suffers. But let me tell you, Gunnar did not always think this way....
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Tuesday Morning Thoughts: Global Genes and the Vertex Labs

Monday was a holiday, so we’re talking about my Tuesday morning thoughts… Global Genes  I was in California for the past week, which you’ll hopefully see as my reason for not blogging much. We’re a small time operation here. I can only do so much at once! I had the chance to join the Global...
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Access to CFTR Modulators Part 1: The United States

Amy talks about access in this week’s installment of Drug Development Wednesday. What is access, and why is it that nearly all American cystic fibrosis patients have access to CFTR Modulators, while access is limited internationally. When I was a junior in college I lived, studied and worked in Europe, and it was one of...
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Monday Morning Thoughts: How I Stay Healthy When I’m Busy

The past five weeks have been crazy. I have another week and a half to go. To put it another way, I have spent a lot of time outside New York. Since the last week of August I have been to Pennsylvania, Maryland (twice), Delaware, New Jersey, Massachusetts, Tennessee and North Carolina. I’m about to...
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Monarch Airway Clearance Vest Makes Traveling So Much Easier

I have had my Monarch Vest for about 5 months or so now, and the absolute best part about it is how stress-free traveling has become. Cystic fibrosis should never serve as a deterrent to informed travel choices, but I’ll be the first to admit that chronic illness can definitely be a stress point. There’s...
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Breathe In Ep. #50 – The Lighter Side of Cystic Fibrosis

Cystic fibrosis is a brutal, unrelenting illness, but there is a lighter side to the disease. Like anything in life, simple mistakes or seemingly very serious experiences can also be funny. Gunnar, Lea and Tiffany tell of a few times when cystic fibrosis led to uncontrollable laughter, from recovery room stories, to the “smelly side”...
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Darcy’s Blog: Guilt and Sacrifice

On last week’s podcast, Tiffany, Lea and I talked about guilt… especially guilt from forcing our support systems to make sacrifices for us. Darcy uses her column today to respond! Gunnar and the Salty Cysters talked about feelings of guilt on the Breathe In podcast last week. According to the trio, feelings of guilt bubble...
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6 Times My Support System Has Pushed Me Outside My Comfort Zone

Life with chronic illness can seem like a series of calculated risks. Some choices can have a huge impact on my health (positive or negative), and I’ve been through enough in my 27 years to know that it sometimes pays dividends to make conservative choices. Other times, though, I need a kick in the ass...
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Monday Morning Thoughts: G-Tube Stigma, Something I Wish I Would Have Known as a Kid, Athlete of the Year, College Football

I had a great tip to Knoxville and Eastern Tennessee Children’s Hospital over the weekend. I love learning from CF families all over the country. G-Tube Stigma One thing I learned from the CF Family Day at ETCH is that the stigma around g-tubes still exists. The g-tube is a visual indication of illness, being...
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Breathe In Ep. #49 – Guilt

The trio talks about the times they’ve experienced guilt in dealing with CF. Guilt comes in many ways, and as Gunnar says, isn’t generally recognized until after the fact. He thinks guilt masks itself as frustration or anger. Guilt seeps into their lives mostly when they are sick and they feel like people are making...
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Drug Development Wednesday: How Are Drugs Priced?

Amy’s next installment in her Drug Development Wednesday column aims to provide some context to the current drug pricing debate. Why do medications seem to cost so much? Where does that price come from? What are patients actually liable to pay? Are the profit margins for biotechs really that much different than other industries? The...
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Monday Morning Thoughts: My Visit to CFF, Smart Report, and Disaster Relief

Lots of important information to start off your week, so pay attention! My Visit to CFF Believe it or not, prior to last Friday I had only ever been to a Cystic Fibrosis Foundation event once or twice in my life – a golf outing hosted by a family friend. It makes sense, we sort...
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Breathe In Ep. #48 – Buy or Sell: CF Tattoos, Vaccinations, Sinus Rinses, Medical Privacy and more

“Buy or Sell” is back by popular demand! The rules of the game are simple, each host has to buy or sell a CF topic. If they “buy” it, that means they support the topic or technique. Conversely a “sell” rating means they disagree. The trio discusses CF topics from CF tattoos, to sterilization techniques,...
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Darcy’s Blog: Gunnar is Gross

I have to tell you… when I asked Darcy if she’d take over a guest column on my blog, I didn’t think this is the direction we’d be going, but alas here we are… talking about my farts. Gunnar is often asked questions along the lines of… what do you do about coughing in front...
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Monday Morning Thoughts: How Many CF Clinics Have You Been To? The Anti-Vaxxers Are after Me! NFL Week 1 Recap

We skipped Monday Morning Thoughts last week (because… Labor Day, duh), but we’re back! It’s Monday, the NFL is off to a hell of a start, but we’ll get to that in a moment. Let’s begin with some cystic fibrosis stuff (after all this is a CF-focused blog). How Many CF Clinics Have You Been...
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Let’s Get Those Flu Shots, Don’t be an A**hole and Skip Out!!!

Good morning lovely people of the Internet! We’ve had TWO, yes TWO, consecutive days of chilly morning weather, so it’s time for my yearly reminder…. GET THOSE FLU SHOTS Let’s get in gear and get those flu shots. Don’t be an asshole and skip out on them. The most vulnerable in our community DEPEND on...
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Which Respirator I use and Why

Yesterday I posted this selfie from my flight to Boston: A few things to note: Grown men do, in fact, take selfies My choice in surgical mask is a bit… unique Airplane cabins are not conducive to people over 6’0 I’ve since gotten a number of questions about the mask. Generally I use a mask...
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Breathe In Ep. #47 – Home IV’s

Breathe In is back after a brief end of summer hiatus! Lea finds herself on IV’s to start up September, so the trio talks about some of their experiences with home IV’s. Home IV’s can seem complex and overwhelming especially for patients and families who haven’t yet developed a routine for recurring pulmonary exacerbations. Gunnar...
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Drug Development Wednesday: Therapeutics Development Network

Amy is back with the 4th post in her Drug Development Wednesday series! I believe that one of the best kept secrets of CF drug development is the Therapeutics Development Network (TDN) – an entity I very rarely hear about in the CF community. What is the TDN? According to the American CFF, “The Cystic...
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Cystic Fibrosis is Still Killing People Before They Turn 30

There isn’t a day that goes by when a family, somewhere, experiences the horrors of cystic fibrosis in a close, personal way. Overshadowed in the constant talk of advances within our drug development pipeline and the widespread improved prognosis for a lot of us, is the simple fact that cystic fibrosis continues to kill people...
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Some of My Passions Outside Cystic Fibrosis and a Great American Road Trip

Believe it or not, I do have a life outside cystic fibrosis! I have a passion for American military, financial and political history. I actually started off my college studies on a political science path. The more you know! To that end, I’ve always felt that my formal education in American history, and the lessons...
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Darcy’s Blog: Cystic Fibrosis as the New Normal

Darcy is back with another blog! Today she’s going to be talking about our relationship! Before Gunnar and I even went out on our first date, he told me not to google cystic fibrosis. I honored his request, and I let him tell me about CF though his own eyes… for the time being. After...
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Monday Morning Thoughts: Dealing with CF Nuisances – Sterilizing, Packing, Neb-cups, Needle Sticks

I’m away this week… the final week of Summer! Thank God for the auto blog-posting feature. We’re going to look at some CF nuisances in today’s blog. Sterilizing My go to technique for sterilizing nebs is to use a microwave baby bottle sterilizer. My thought process behind this is that if a company is making...
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