I Have Cystic Fibrosis, and CF Has Me

This Lung Life By Ella Balasa

I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say this statement is true. They conquer everything, despite CF.

I am not one of these patients. I am optimistic, though. I’m optimistic that one day I will sprint faster than you (with transplanted lungs). I’m optimistic that I will leave this world having made some kind of impact on those around me, and maybe others that I am unaware of. But with this DNA in the cells of my lungs, I can’t do it all.

I’ve had significant events and minute moments in my life that have been affected by CF, although it’s not always apparent to the world around me. However, I don’t claim that CF has altered my life for the worst. Instead, I show the reality.

CF had me most recently when I was planning to go to the Cystic Fibrosis Research Inc.’s Family Education Conference. Being a director for the U.S. Adult Cystic Fibrosis Association, I wanted to connect with fellow CF directors and hear about the amazing new research the CF community is eager to benefit from. Unfortunately, due to CF infection guidelines and the bacteria I harbor in my lungs, I posed a risk to other CF patients, so I was restricted from attending.

Recently, as my form of exercise, I have been playing tennis. CF has me when it grasps my airways after just a few serves. I feel my lungs expanding but not getting enough air, exhausted from a previous sprint of just a few feet. I watch as the ball spins toward the far corner of the court. In my mind, my legs are in the air moving toward it, but in reality, they have just elevated the sole of my foot for the first step. The muscles are depleted of oxygen, waiting for the next burst for them to spring into action, but it never comes. Instead, they continue straining with what little reserve they have, for one-quarter of their potential. The quarter that comes from the lungs that function at one-quarter of what they should.

CF dictated the direction my life would take when upon graduation I was offered my dream job, but I didn’t take that career path. Spending four hours a day on breathing treatments, attending frequent doctor’s appointments, having occasional hospital stays and health insurance factors, as well as maintaining a social life and community involvement weren’t conducive to a full-time working schedule. Choosing not to advance in my career as my peers did made me feel left behind. Instead, keeping my health as the focus, I chose part-time employment.

CF has me when I have an exacerbation and lots of congestion in my lungs. On occasion during these times, I’ve taken the flight of stairs from the basement out into the sunshine after work. After a few steps outside, I feel the absence of air in my lungs. I gasp and then panic. Continue the article here. 

Past USACFA Scholarship Winner’s touching poem about CF

My name is Grace Knight and I am a college student with cystic fibrosis. I am 20 years old and go to the University of Pennsylvania. This past summer, I took a few summer school classes to make up for the medical leave I had taken the year before. In one of the classes, we had to write poems for our final project. One of the poems I wrote was this poem titled “Only Morning.” It is about how it feels to wake up with CF every day. The poetic form is based upon a classical piece I used to play called Chaconne in G minor by Vitali. I have actually previously compared to this piece of music to CF because the more into the piece you play the harder it gets. I found this similar to the progressive nature of the disease.

Continue reading Past USACFA Scholarship Winner’s touching poem about CF

Broadway’s biggest stars come together to raise money for Cystic Fibrosis

What do you get when Broadway’s biggest stars, such as Javier Muñoz and Gideon Glick, come together in the recording studio? One heck of a song. And one heck of a message.

Joined by Broadway veterans Laura Osnes, Christy Altomare and actress Sarah Levy, Muñoz and Glick have banded together for a new campaign — called the “Anyway” campaign — for an original song to help raise money for Emily’s Entourage.

At the center of the Entourage is Emily Kramer-Golinkoff: a 33-year-old daughter, sister and granddaughter who was diagnosed with Cystic Fibrosis when she was just a few weeks old. Her parents, Liza and Michael, have done everything in their power to raise Emily as if she was a normal child.

As the fatal disease only affects 70,000 people worldwide, funding for a cure is limited. Emily and her family are even more restrained by her specific mutation, which means medical funding is even rarer. And with a life expectancy of only 35-37 years for her kind of CF, time’s ticking.

Six years after the Kramer-Golinkoffs decided to take matters into their own hands, they’ve raised $3 million to drive high-impact research and speed up breakthroughs to research not only Emily’s mutation, but many other diseases including muscular dystrophy, inherited blood disorders and certain cancers.

They’ve also built a network of family, friends, and strangers from around the world, all of whom have been welcomed into the Entourage. Each Entourage member has been more inspired by Emily’s story than the next.

Take Elizabeth Phillipson-Weiner, from Emily’s hometown of Philadelphia, Pennsylvania and composer of “Anyway.” She took a simple journal entry from a songwriting retreat, turning lyrics like “when the going gets tough I ask questions” into a prolific melody.

Elizabeth explained to AOL Lifestyle. “The song wasn’t just cathartic for me, but could actually ring true for a lot of other people. I immediately thought of Emily.” Working with co-writers, producers and engineers, that melody was soon turned into a demo.

But as inspired as Elizabeth was by Emily’s story, the Entourage required “star power” to bring this project alive.

“I cold contacted agents and managers, I asked friends and friends of friends and friends of friends of friends,” said Elizabeth. “We did hear ‘no’ quite a bit, but whenever I became discouraged or frustrated I thought about who and what I was doing this for.”

This story was originally published on AOL.com

Ground-Breaking Procedure. A major step for science, medicine, the human condition

by Mary Bulman; Independent UK

“Woman spends record six days without lungs thanks to ground-breaking procedure”

Yes you’ve read that correctly.
Yes, it reads six days.

A true miracle! Definitely an understatement.

Though it’s been over a year since this procedure was carried out, it’s one that I believe cannot be shared enough. A huge step for medicine and science- but perhaps a larger one for the human condition and the willingness to live and fight.

“I still don’t believe it happened. It seems very surreal.” says patient Melissa Benoit.
And that’s because it is, Ms. Benoit.

After coming down with the flu the last year 2016, Ms. Benoit was taken from her home in Burlington, Canada to the ICU in a nearby hospital located right outside of Toronto, Canada.  Doctor’s made the spilt decision to go through with a first time procedure in order to save her life. After becoming resistant to most antibiotics, bacteria began to move throughout her body, eventually causing her to lapse into septic shock. One by one her organs started shutting down, due to the decline of her blood pressure.

“Although it had never been carried out before, doctors decided to remove her lungs entirely.”

“What helped us is the fact that we knew it was a matter of hours before she would die,” said Dr Shaf Keshavjee, one of three surgeons who operated on her. “That gave us the courage to say — if we’re ever going to save this woman, we’re going to do it now.”

To learn more about Ms. Benoit and the new breed of surgery that was carried out please continue onto the article below:
https://www.independent.co.uk/news/world/americas/woman-six-days-without-lungs-waiting-list-donor-organ-burlington-ontario-melissa-benoit-world-first-a7547936.html

Tips for Surviving a Holiday Admission

Guest Blog By: Lauren Jones Hunsaker

Most of us have had to suffer through a holiday admission at one point.  It’s a reality of our disease, which, for most of us, never made a habit of consulting our social calendars before burdening us with an exacerbation.  I’ve spent several Christmases, birthdays, wedding anniversaries and many-a-Thanksgiving admitted.  As far back as middle school, most of my holidays were spent in the hospital simply because it was an advantageous time for an admission.

It’s not an easy thing to endure for kids or adults.  On a good day, being in the hospital is boring, uncomfortable and tedious.  The holidays magnify our misery by adding self-pity and a serious case of F.O.M.O. to the litany of grievances.  However, there are a few easy things you can do to weather the emotional storm of a holiday admission:

  1. Make a To Do List. While a day of nothing but channel-changing can seem never ending, a daily to-do list can help compartmentalize your day and alleviate the monotony of an admission.  Reading, exercising, playing games or journaling at specific times can be helpful distractions and keep you from staring wistfully out of your window.
  2. Enjoy Holiday T.V. Ordinarily, I don’t watch a lot of television.  But during the holidays there are so many classic movies, parades and specials on, allow yourself to indulge in the holiday deluge.  If nothing else, it helps pass the time and connects you to the outside world (“Hey, did you catch It’s a Wonderful Life for the sixteenth time on NBC?”  “I sure did!” “I don’t really understand why ‘Hee Haw!’ is funny.” “Me either, but Clarence is my favorite.”).
  3. Schedule Holiday Events Post-Discharge. The holidays are the holidays because of family.  The pilgrims will not cast a pox on your house if you host Thanksgiving the following weekend so ask family members if they are willing to attend a second family gathering after your discharge.  This gives you something to look forward to and helps temper loneliness while your family memorializes turkey carving on Facebook Live.
  4. Try a Little Empathy. No one wants to be in a hospital on Christmas, including doctors, nurses and nurse’s assistants.  I know what you’re thinking – “they’re getting paid to be there.”    And so as to preempt your next argument, yes, some are getting paid a higher wage for working on a holiday.  But remember that many don’t have a choice in their work schedules, just as we don’t have a choice as to when we’re admitted.  Staff are away from their families and missing holiday gatherings so they can take care of patients.  Take a moment to tell a favorite nurse thank you for working on the holiday.  Sometimes making someone else feel better makes you feel better too.
  5. Order in a Special Meal. Diet restrictions permitting, indulge in a holiday craving (i.e., turkey with stuffing, Chinese takeout, multiple desserts).  Your doctors will love that you’re packing in some extra calories and it’ll give you a break from repetitious hospital food.
  6. Take Advantage of Tech. Twenty years ago, when we would emerge from an admission (shielding our eyes from the blazing sun, unaccustomed to human life), we had no idea what had occurred during our fourteen days of solitude.  Gone are the days.  With social media and constant connectivity, we rarely experience the same isolation we once did.  Use today’s technology to cyber-attend family events from afar—FaceTime into family dinner or Skype into religious celebrations.  Social media can sometimes (and ironically) exacerbate loneliness, but use its advantages to stay connected during the holidays.  Feeling included can boost morale and help you power through an admission.

CF Podcast 169: #MyNewLungs

In this podcast, cystic fibrosis patients share their inspiring double lung transplant stories in honor of organ donation awareness month. From being listed to “dry runs” to the actual surgery – each of these stories offers a unique Continue reading CF Podcast 169: #MyNewLungs

Double lung transplant patient reflects on life 26 years after lifesaving surgery

http://www.wect.com/story/34508973/double-lung-transplant-patient-reflects-on-life-26-years-after-lifesaving-surgery

Howell Graham was the first Cystic Fibrosis patient at UNC to receive a double lung transplant that saved his life in 1990. Today, he looks back on what all he has been able to accomplish since the day of his Continue reading Double lung transplant patient reflects on life 26 years after lifesaving surgery

OWN IT: Celebrating What It Means to Live a Life

OWN IT: The Oscars, Viola Davis, and Celebrating What It Means to Live a Life

Well the Oscars certainly didn’t disappoint. I’ll get to Warren Beatty and Faye Dunaway in a second, but first I want to talk about Viola Davis’ acceptance speech.

For those of you keeping score at home Ms. Davis won the Oscar for Best Actress in a Supporting Role for her part in Fences. I haven’t seen the movie yet, but I certainly plan on it because, let’s be honest here, anything with Denzel Washington AND Viola Davis is sure to be awesome.

But, that’s neither here nor there.

In her acceptance speech, Ms. Davis (deservedly so) got very emotional and began what seemed to be a tremendous talk about some of the greatest stories being buried in the graveyard, and, while often overlooked, they are the ones worth telling.

It’s tough to dispute her statement. I love reading memoirs and watching biopics. What better way to honor someone and learn something new?

Ms. Davis then went on to say, “I became an artist, and thank god I did because we are the only profession that celebrates what it means to live a life.”

Everybody stop.

I think we’ve found ourselves an early front-runner for hot take of the year.

With all due respect, Ms. Davis, I disagree. Artists are not the only ones who “celebrate what it means to live a life.”

Asserting that artists are the only ones who do so is simply false. I’m not going to let your profession own this– everyone shares it.

Our lives are unique stories, and we are all the sole writers. Each story influences every other one out there, but ultimately they are our own. Some are told, and others are internalized for eternity. That doesn’t make one superior to the other, nor does it mean that some lives are celebrated while others are not.

CONTINUE READING…

To read more of the blog, please visit www.gunnaresiason.com.

Remember to keep sending in those questions to GunnarsBlog@esiason.org I have received so many great emails so far. It has been pretty cool to get the chance to answer a lot of them.
-Gun

Gunnar Esiason’s Guide to Gifts for Someone with CF

Christmas is just around the corner, so it is time to start working on those lists to send to Santa!

Here’s my holiday season gift guide for that special someone with cystic fibrosis in your life… or maybe someone without CF (if you somehow find Continue reading Gunnar Esiason’s Guide to Gifts for Someone with CF

6 Tips for Standing Back Up

6 Tips for Standing Back Up After Being Knocked Down — Guest Blog By Emily Kramer-Golinkoff

Originally posted on Emily’s Entourage, on July 27, 2015
http://www.emilysentourage.org/6-tips-for-standing-back-up-after-being-knocked-down/

The other week, I got some disappointing news at the doctor’s. I have to be honest, it caught me off guard and knocked me down. It also got me thinking about life, the punches it can throw, and how to get back up with strength, conviction and authenticity.Here are 6 tips for standing back up after being knocked down:

Continue reading 6 Tips for Standing Back Up