Gunnar Gunnar Esiason

All articles by Gunnar

 

Monday Morning Thoughts: My Go-To Anti-Inflammatory, Try To Be a Realist, Happy Father’s Day!

A quick Monday Morning for you… I’m off to New Hampshire for a BEF Fundraiser! My Go-To Anti-Inflammatory  Inflammation is such a big problem in cystic fibrosis that there are people out there who think CF is part autoimmune disease. The jury is still out on that, I suppose. What we do know, however, is...
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Apparently, Living Longer Isn’t of “Value” to Patients

Something of grave concern is happening the cystic fibrosis community. In May, the Institute for Clinical and Economic Review (ICER) released a report questioning the value of Kalydeco, Orkambi and Symdeko, and arguing for a significant price reduction. This report does nothing, but serve as a barrier for patient access to critical medication. One would...
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Breathe In Ep. #37 – The Transplant Games

Erinn Hoyt, 27 with cystic fibrosis and 2.5 years post double lung transplant, comes on the podcast to talk about her path to the 2017 Transplant Games. Erinn says that Swimming was a huge part of her life, and kept her out of the hospital until she was 17 years, which oddly enough is when...
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Swapping out a G-Tube

People love when I swap out my feeding tube, so let’s dedicate a blog post to it! The G-tube is hardly a permanent device. At least that’s what the told me to sell me on the idea of getting one. “Don’t worry, Gunnar. It doesn’t last forever!” Little did I know that actually meant I’d...
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Monday Morning Thoughts: Drug Pipeline Update, A Livable Cure (?), and Confidence

A lot of exciting stuff in the world cystic fibrosis to discuss from the last week or so… Drug Pipeline Update A few medications are charging through the drug pipeline that could one day, very soon, broadly impact the CF community. First we have this guy, SPX-101. SPX-101 is an ENaC Modulator. Without getting too...
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Breathe In Ep. #36 – Cystic Fibrosis and IVF

Doug Simmons, 33 with cystic fibrosis, joins the podcast to talk about the IVF process. Since 98% of men with cystic fibrosis are infertile, CF men need to go through IVF to father children. Doug takes us through the entire process, from his wife Whitney’s genetic testing, sperm aspiration, to egg retrieval and embryo transfers....
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I Went to my 5-Year College Reunion and Learned a lot

It’s hard to believe I’ve been out of college for a year longer than I was in. It’s certainly worthy of a personal milestone. I remember talking to a Boston College alum, who also has CF and graduated several years ahead of me, right around when I graduated. She was talking about her 5-year reunion...
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Monday Morning Thoughts: Achieving a goal, My workout week, Some advice

A quick one today… I’m off to clinic! Achieving a goal I had my 5-year college reunion this past weekend. I’m still trying to wrap my head around that I suppose, and I’ll definitely write about it a bit later in the week… I think it counts as a milestone. Anyway, at BC there is...
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Breathe In Ep. #35 – Love to Breathe

Somer Love joins the trio to round out cystic fibrosis awareness month. Somer is a tremendous advocate for people with cystic fibrosis as she shares her journey very transparently through social media and her brand – LoveToBreathe. Somer talks about how staying positive and having a good sense of humor are the best ways to...
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TOP GUN 2 IS FINALLY HAPPENING

*EMERGENCY BLOG POST* Folks…. it’s happening. Top Gun 2 has started production! #Day1 A post shared by Tom Cruise (@tomcruise) on May 30, 2018 at 10:40pm PDT Please let the Top Gun Anthem serenade you as you enjoy the following .gifs pic.twitter.com/9na9U2yQ1K — Gunnar Esiason (@G17Esiason) May 31, 2018 pic.twitter.com/bhHdpzQEpA — Gunnar Esiason (@G17Esiason) May...
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Monday Morning Thoughts: Raccoon Invasion, the Bachelorette and the Stanley Cup Finals

I know it’s Tuesday, but the series is called Monday Morning Thoughts, and Monday happened to be a Federal holiday… and it’s my blog. Raccoon Invasion Last night was a night of firsts for me. My first 9-1-1 call, animal control experience and sick raccoon encounter. Apparently we have a raccoon problem on Long Island...
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Breathe In Ep. #34 – Mail Bag: Farting, Working in Healthcare, Achieving Goals and Confidence

The trio answers some questions from their listeners. How to approach farting in front of a new boyfriend or girlfriend? Do you ever feel guilty from being sick and having to miss out on a commitment or promise? What’s it like for Lea to work as a nurse? What were a few things that your...
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Right to Try to be Signed Into Federal Law

As I said earlier this week, we’d be getting a Right-to-Try vote in the House, and well, we got that vote. Last night the House voted to approve the bill and will now send it to President Trump’s desk for his signature (it’s pretty much guaranteed conclusion that he will sign it). As reported by...
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I Want The Cystic Fibrosis Foundation CF Patient Registry To Be An Open Source

The Patient Registry might be the most important innovation from CFF in its history. It’s one of the main reasons that we are seeing the kind of success that we all enjoy today. From CFF: Since the 1960s, the CF Patient Registry has collected information about people with CF who receive care at CF Foundation-accredited care...
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Monday Morning Thoughts: The Royal Wedding and #OrkambiNow, Right-to-Try Vote, and Summertime!

Summer is right here…. We’re on the doorstep! But first… some thoughts. The Royal Wedding So I made a Facebook post over the weekend about the Royal Wedding… …and may have created quite the uproar (on Twitter too). Friendly reminder that the UK will pay for a #RoyalWedding but won’t fund life changing cystic fibrosis...
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Breathe In Ep. #33 – Hospital Stays, the good, the bad and the ugly

This week’s episode was recording on Facebook Live! If you missed it, don’t worry! Check out the above video or head over to iTunes to check it out! The trio talks about hospital stays – the good the bad and the ugly. Gunnar gets “Iced” by his college roommates during an admission from his college...
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We Have Responsibilities That Extend Beyond Our Health

We’re human beings, we have responsibilities – they extend beyond our health. We work, we have families, friends, hobbies, and obligations. We have lives outside of cystic fibrosis. My newest responsibility is my puppy, Blink. Blink is a Jack Russell Terrier (or so we think), and she’s absolutely taken over the house. We have another...
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The Internet Thinks I Might be Dead

Apparently the Internet thinks I might be dead, and I think that’s hilarious. Like any normal person, I was Googling myself and this came up…. Suggested searches are my favorite searches. The answer for those of you keeping score at home is, YES, I am still alive. I suppose some people come across the old...
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Cystic Fibrosis Around the World: The Kingdom of Jordan

Cystic Fibrosis Around the World heads back to the Middle East to talk to an adult living with CF in Jordan! Again… thanks to the Middle East Cystic Fibrosis Association for helping to make this connection! We did have a pretty significant language barrier throughout this interview. Yazan had to use a translator program, so...
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Monday Morning Thoughts: Sterilizing Nebs on The Go, G-Tube Body Image, and Aussie Bro Donates Blood, Saves 2 Million Babies

This installment is coming at you from sunny (read: rainy) Florida! Sterilizing Nebs on the Go It’s been awhile since I’ve taken a vacation longer than a long weekend, maybe 3 years or so? With any extended vacation comes the question of how many neb cups am I going to take and how am I...
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Breathe In Ep. #32 – CRISPR and Genetic Ethics

Podcast is dropping a day early this week as Gunnar heads off on vacation! Tiffany talks about her upcoming date with Taylor Swift this weekend, before the trio jumps into a debate about CRISPR and genetic ethics. They respond to the 60 Minutes CRISPR story from 4/29 and talk about the future of genetic precision...
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Monday Morning Thoughts: Telemedicine, Stop Comparing CF to Other Illnesses, CF Awareness Month

A few of my thoughts to help you get this week rolling! Telemedicine I posted about a link about telemedicine last week on my Facebook page and it created quite the conversation in the comments: We’re stepping into the future with this… it’s starting to happen, and some CF clinics are actually rolling it out....
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Breathe In Ep. #31 – Right to Try and Compassionate Use Medications

The trio responds to a number of comments on their social media platforms about “Right to Try.” What is Right to Try? How is it from Compassionate use? The trio debate the ethics surrounding a person’s right to try unapproved medications. Is it worth it? Does it undercut the FDA and is that a good...
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Cystic Fibrosis Around the World – Pakistan

Cystic Fibrosis Around the World continues with an interview from Pakistan! I’d like to give a special shout out to the Middle East Cystic Fibrosis Association for helping out with this project! The MECFA has played a significant role in connecting me with patients from the Middle East so that we can share more and...
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What I’ve Learned From Others with CF

May is Cystic Fibrosis Awareness Month – everything has a month or week these days – and rather than writing about myself, how much time I’ve spent doing treatments, why we need to balance drug development with disease maintenance, and something super cliché, I’m going to talk about what I’ve learned from some of the...
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Monday Morning Thoughts: CRISPR, Golden State Killer, Alfie Evans

I’m launching a new blog series today – Monday Morning Thoughts (title subject to change…). I plan to use this space to take short little jabs (read: give opinions) at various topics from the past week or from questions in my Inbox. I think it will evolve over time to be more wide ranging as...
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How Do We Improve the Patient Experience?

Illness is almost routine in CF. The cough starts, then the fever, then the mucus production, then the change in the consistency of the mucus, then the call to the doctor. What follows that call is really one of a few possibilities. “Come in, let’s get it checked out.” “Start Cipro, stay in touch with...
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Breathe In Ep. #30 – Are Adult Patients Forgotten?

Have we lost sight of the adult patients in the cystic fibrosis community? The trio responds to Gunnar’s blog about what seems to be the prioritization of pediatric patients over the adults who have fought through CF for decades. Do adults feel forgotten? Tiffany talks about some of the frustrations she feels in having just...
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Saying, “Kids Born Today Can Expect to Live to be X Years Old” Alienates Adults

The cystic fibrosis community can be split into several groups, none more important, though, than our break between adult and pediatric patients. On one hand we have children, backed by their very passionate parents. On the other side we have adults who have broken through the childhood disease, and are redefining the condition on a...
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Breathe In Ep. #29 – Fight Like a Boss

Nick Di Brizzi joins the podcast for a special Organ Donation Awareness Month show. Nick, 37 with CF, is about 2 and a half years post double lung transplant. Nick talks about his journey through transplant, including an emotionally tolling “dry-run.” He also talks about his Fight Like a Boss documentary and Breathe Like a...
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How Can We Improve Mental Health In The Cystic Fibrosis Community?

Mental Health is sort of the hot button topic in the CF world these days. Finally… I might add. It seems like just within the last few years someone, somewhere was like, “you know what… all these families might be dealing with some issues from the stresses and anxieties that go along with rigorous daily...
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How Should a Parent’s Role Change Through the Years?

I got an interesting question from the audience at my CF Family Education Day talk last weekend – “What roles do your parents play in your fight against CF now that you’re an adult?” The short answer is that both of my parents are still very involved. My mom remains my first line caregiver in...
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“A Quiet Place” Might Discriminate Against People With Respiratory Illness

“A Quiet Place” is charging through the box office having grossed nearly $100,000,000 over its two week run. It’s a big movie. It’s also an entertaining movie…sort of a “humans vs. monsters” thriller. The premise is that a group of post-apocalyptic survivors try to continue life in a world where (pretty stupid looking) monsters are...
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Self-Righteousness Isn’t Always Righteous

I love this new world we live in where everything offends someone. Pretty soon our dictionary is going to be limited to about 17 approved words, and it’s going to be hilarious. If you were keyed in on the news yesterday you might have come across this story about a mother and her young daughter...
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Breathe In Ep. #28 – Staying Organized

Breathe In takes a question from Gunnar’s Facebook page, “how do you stay organized?” The trio goes over a few different areas of care and organization, from treatment set ups, to routines and finances. Lea debates with Gunnar and Tiffany over her use of a “treatment tower” while Gunnar is the only one on the...
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As It Turns Out, People Don’t Like When Their Family Members Are Sick

As it would turn out, people don’t like spending time in the hospital, which is probably the least shocking thing I’ve ever heard in my life. So here we are, another day… another caregiver feeling inconvenienced. I Came across an op-ed over on HuffPost, “Long Hospital Stays Don’t Affect Only The Patient” and wouldn’t you...
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Breathe In Ep. #27 – Cystic Fibrosis March Madness Bracket Recap

The trio is back after a week off to recap the Cystic Fibrosis March Madness Bracket. Coughing takes home the title (to little surprise), but Gunnar, Tiff and Lea noticed an interesting voting trend – people in different age groups tended to vote in different directions. The group discusses body image and why “You Don’t...
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10 Problems Facing Cystic Fibrosis Patients and My Solutions

Welp… now that the Cystic Fibrosis March Madness Bracket is over we can talk about some of the glaring issues that people have when living with CF. That’s right! We’re living in the age of data and information collection, and your stuff has just been collected! Just kidding… but I think we should look at...
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The Winner of the Cystic Fibrosis March Madness Bracket – Coughing

After weeks of voting, far too much sweat and a few tears, we have a winner! Coughing is going home with the title of “the most annoying part of living with cystic fibrosis!” Congrats to coughing for all its hard work this season. A well deserved title. Here’s the voting breakdown: #1 Coughing 62.9% –...
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Happy #NationalDoctorsDay!

Happy National Doctor’s Day everyone! Big shoutout to all the doctors on #NationalDoctorsDay for making sure we don't die. ty — Gunnar Esiason (@G17Esiason) March 30, 2018 via GIPHY Turns out we’ve got a holiday for everything. Shootout to the people who make sure we don’t die! The real first line of defense; The group...
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Cystic Fibrosis March Madness Bracket – The Finals Voting

THE MOMENT EVERYONE HAS BEEN WAITING FOR!! IT’S THE FINALS Here are the results from Cystic Fibrosis Four. #1 Coughing 57.1% – #1 Daily Treatments 42.9% #1 Life Expectancy 49% – #1 “You Don’t Look Sick” 51% It’s amazing how close the games were this past round – especially Life Expectancy vs. “You Don’t Look...
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Cystic Fibrosis March Madness – Cystic Fibrosis Four Voting

We’re down to the last part of the bracket…here are the results from last week: #1 Coughing 73.2% – #7 Fatigue/Difficulty Sleeping 26.7% #1 Daily Treatments 55.6% – #6 Antibiotic Resistance 44.4% #1 You Don’t Look Sick 54.3% – #2 Insurance Battles 45.7% #1 Life Expectancy 53% – #6 Inconsistent Day-to-Day Health Welp… looks like...
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Coming Across a Doctor Who Isn’t Familiar With Your Chronic Illness

Cystic fibrosis doesn’t make me immune to other ailments or injuries. Shit happens, we get sick, we get hurt… it’s life, and a lot of the time it’s unrelated to CF. The way we treat those issues, though, can relate to CF. Cystic fibrosis is very complex. Our condition is a mix of infectious disease,...
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Cystic Fibrosis Around the World – Sweden

Cystic Fibrosis Around the World continues with a trip to Sweden! I’m super excited to be including Sweden in this series. My family has ties to Scandinavia – both Norway and Sweden (you could probably guess that by my name – Gunnar), something we take great pride in, so I was happy that Lisa reached...
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Breathe In Ep. #26 – Cross-Infection

The trio responds to an op-ed published by CF News Today which calls into question some of the cystic fibrosis cross-infection standards. Cross-infection is a very serious concern in the cystic fibrosis community when it comes to bacterium sharing and safety. The trio explains, on a very basic level, what cross-infection is and why it’s...
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Cystic Fibrosis March Madness – Electrolyte Eight Voting

Alright! Here are the results from the Salty Sixteen: SYMPTOMS REGION #1 Coughing 75.9% – #12 Stomach Pain 24.1% #6 Distended Stomach 37.6% – #7 Fatigue/Difficulty Sleeping 62.4% TREATMENTS REGION #1 Daily Treatments 70.9% – #4 Realizing You Forgot a Medication 29.1% #6 Antibiotic Resistance 52.3% – #2 Hospital Stays 47.7% (14 vote spread) INTERACTIONS...
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Cystic Fibrosis March Madness – Salty Sixteen Voting

Alright round two is in the books – lets see the results! SYMPTOMS REGION  #1 Coughing 87.1% – #8 Dehydration 12.9% #5 Malabsorption 48.9% – #13 Stomach Pain 51.1% #6 Distended Stomach 56.9% – #3 Fevers 43.1% #7 Fatigue/Difficulty Sleeping 68.8% – #2 Gassiness 31.2& TREATMENTS REGION #1 Daily Treatments 68.6% – #8 PICC Placements...
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New Bolus Feeding System is AWESOME for Feeding Tube Users

Where are my feeding tube people at?! I was recently introduced to the Bolee bFed feeding tube system from U Deliver Medical, and this thing is pretty cool. This is changing the way I ‘m doing bolus feeds, and YOU need to jump on board. If you’re an experienced tubie like myself, then you know...
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Cystic Fibrosis March Madness – Round 2 Voting

Round 2 is here! We’re starting to get into the territory where just about all of this sucks… or the vast majority of us living with CF actually deal with most of the issues within the remaining teams one way or another. For the most part, one-off issues that patients may or may not deal...
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CF March Madness – Round 1 Results

The results are in! Here’s the breakdown from the first round: SYMPTOMS REGION #1 Coughing 87.2% – #16 Barrel Chest 12.8% #8 (Dehydration) 53% – #9 Loss of Appetite 47% #5 Malabsorption (Diarrhea) 73% – #12 CF laugh 27% #4 Obstruction (Constipation) 41.1% – #13 stomach pain 58.9% #6 Distended Stomach 74.8% – #11 CF...
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