Virtually Very Cool Conferences

By: Mark Levine
One of the things I love about the CF Roundtable is how it brings the CF community together and is a forum for sharing stories. Stories, after all, are what life is about. So when I heard about CF virtual conferences, I had to learn more.
This past fall I attended my first BreathCon, a virtual conference for CF Adults organized by the the CF Foundation and a lot of volunteers. About two weeks ago, I participated in another virtual conference, a smaller one labeled a Mini-Con, which had the theme of Sexual and Reproductive Health. Yes, it was as interesting as it sounded like it should have been.
As a step-father of two, I was asked to facilitate a discussion on parenting. There were a lot of stories as well as some amazing tips and tricks that are wonderful to hear live. All of the conferences have a theme and they start off with a keynote address followed by break-out sessions (group discussions) with varying topics related to the theme. When I first signed up for one of these events, I had no idea how a virtual break out session would work but I have to confess… they are really cool.
The platform, or software, that is used is called BlueJeans and it allows people in a “room” to see and talk to each other using their computer or cell phone camera and microphone. Picture a Brady Bunch style screen layout and you get the idea.
Turns out that people with CF are pretty open about pretty much everything. There is a lot to be learned from others with CF and it is not only comforting to chat with people going through the same thing you are but also refreshing to hear a different perspective. I recommend getting on the mailing list for future conferences. The next one is scheduled for June.
Sign up by going to www.cff.org/virtualeventsYou will be happy you did. Until then, keep on creating those stories. I will see you online.
Mark Levine, 48, lives in Michigan with his wife Joelle and shared dog BamBam. Mark has two step-children, 23 and 21. He is on the board of and the subscription manager for the CF Roundtable.

 

 

 

A Letter To My Donor

Jerry Unplugged: A blog by Jerry Cahill

Six years ago, on April 18, 2012 I received the ultimate gift – a healthy set of lungs.  

This is my transplant story and finally, an open letter to my donor Chris who gave me a second chance at life. 

On April 17th I was called to Columbia University Medical Center (CUMC) in New York City. They had a perfect set of lungs on paper for me and simultaneously while I was on my way in, a team went to harvest and evaluate these lungs, which were located out of state.  It’s a bit of coordination for the doctors to determine the health of the lungs. Were they damaged? Were there contusions or other imperfections? Were these lungs meant for me? The team at CUMC would make the final decision on whether they were a match or not. It was the sixth time that I’d been called in for the transplant, so I wasn’t getting too excited, but I also didn’t let myself get too down. This time the news was good – the transplant was a go! Before I could blink, my team began to prep me. My worn out, diseased lungs were about to be replaced with clear, healthy lungs. My life was about to be forever changed.  

Before I went into surgery, my lung function was at a dismal 19% and I spent eighteen hours a day pumping myself with medications and intravenous antibiotics to stay alive.  This wasn’t me. I was a coach, an athlete and an advocate for living a healthy life with cystic fibrosis. This wasn’t healthy! My quality of life was non-existent, and quite frankly, I was embarrassed each time I struggled to walk up a flight of stairs.  

As I was wheeled into the operating room, I remember saying to my family, “Go into the waiting room and wait. I’ll see you later.” What was I thinking?   

When I woke up I truly was a changed man.  It was a foreign feeling  for me to have clear lungs and when I took my first breaths I told my surgeon, “these lungs are too big – I think you stuffed them in.” This wasn’t a joke, I was being serious.  I was grateful and knew this wouldn’t just be a second chance at life for me, but for my donor Chris.  We were in this together now. 

The last six years have been quite a journey – and that’s very much how I view life – as a journey.  I’ve written letters to my donor’s family each year, but they haven’t responded yet. I wholeheartedly respect their decision, but I felt strongly compelled to write an open letter to this amazing man Chris, who saved my life. 

Dear Chris……

To read Jerry’s letter to Chris, please click here

Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

To continue reading this article please click here.

Introducing our Newest Board Members!

Rachel Steinman

Hi! My name is Rachel Steinman, I’m 29 years old, and I’m super excited to be a member of the USACFA board.

I was diagnosed with CF at the age of 16 and have been very fortunate to have had fairly stable health throughout my life thus far. 

No matter one’s level of health, USACFA is an important outlet for our community. CF is a complicated disease and it affects every patient in a unique way. For me, having an online community has helped me both learn more about this disease, and feel less isolated in the process. 

I graduated from the University of Miami with degrees in Journalism and Sociology in 2009, and I spent a year volunteering with Americorps shortly after. A few years into my career I decided to quit my job and move to Tel Aviv, Israel for a change of lifestyle and a marketing position with a tech company. I moved back home to NY after a year to be close to my family.

I grew up on Long Island and currently reside in NYC with my boyfriend where I continue to work in digital marketing. I enjoy cooking, traveling with my boyfriend, and spending time with friends and family.

I believe I’ve been able to maintain good health with the help of a great team of doctors at Columbia Presbyterian in Manhattan, a positive attitude towards life with CF, lots of acupuncture and cupping therapy, and a very loving, supportive family.

As a new member of the board, I’m excited to be joining both the blog and social media committees, so please look out for future posts from me!

Amy Sylvis

Hello! My name is Amy Sylvis and I am so grateful to be a member of the USACFA board. I have been an avid reader of the CF Roundtable since the late 90s and I am forever grateful for how much I have learned over the past 2 decades from the publication. I fiercely believe that all people with cystic fibrosis should have access to the best care and latest knowledge – and I’m thrilled to be able to contribute to this prestigious organization. My specific passions include hemoptysis, aspergillus, CFRD and decreasing quality of treatment variation across CF centers in the United States.

I am 36 years old, diagnosed at 6 months old. I earned my Bachelors of Science in Business and Bachelors of Arts in International Relations from the University of Southern California as well as my Masters in Business Administration from USC. I have worked full time mostly in biotech and pharma, which continues to be my passion despite my health forcing me to leave work in 2017. In my spare time you can find me reading non-fiction, watching college football and traveling. My husband and I were married in August 2017, and we live in Los Angeles, CA with our little cocker spaniel/dachshund mix.

Congratulations to Our Scholarship Winners!

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship for the Spring of 2018.

In our evaluation, we look for students who demonstrate tremendous academic achievement, community involvement and a powerful understanding of how having CF matched with these achievements places them in a unique situation to gain leadership roles within the community. Our scholarship is open to all pursuing any degree, from associates to Ph.Ds. We believe that any higher education is a strong foundation for advocacy and involvement in CF.

We are pleased to announce Hannah Buck and Mary Grace Bernard as the recipients of this semesters’ scholarship. Congratulations to them! They will be awarded $2500 each.

Both of our recipients demonstrated the leadership, intelligence, and drive of Lauren Melissa Kelly. We at USACFA look forward to seeing them further develop their leadership and advocacy in the cystic fibrosis community.

We are also pleased to award runner-up scholarships in the amount of $250 to five deserving applicants: Elizabeth Shea, Chloe Creager, Rebekah Weigner, Holly Beasley and Christopher Davis, Jr.

We are excited to announce more scholarship opportunities coming soon! Please stay tuned for more information. For questions, please contact us at scholarship@usacfa.org.

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.