Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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Jerry Unplugged: Bouncin’ Back

Well, here I sit, staring at four walls, unable to ride my bike, work out, coach, or run. I’m stuck here in my apartment for the next two weeks as I recover from a partial knee replacement. This lifestyle is not me at all. I’m frustrated, and it would be easy to get discouraged, but I can’t afford to.
I’ve just listed some of the many things I can’t do, but I’m focusing on what I can and must do in order to live the way I want to live. I must stay focused on the positive and on my recovery. It’s the only way to bounce back to my version of normal.

Continue reading Jerry Unplugged: Bouncin’ Back

Lessons From the Road: Avoid the ER

By: Sydna Marshall

A few weeks ago I found myself in the ER at midnight in a new city.  Let me backup the story a bit. I had planned a road trip to Dallas with my bestie (we’ll call her “A” for now) for a beauty conference. Two days before the trip I ran a 102.6 fever for the better part of the day. The morning of, as I was doing my treatments and finishing my packing, I felt the familiar band of pain around my chest. I mentally ruled it out as merely remnants of pain from my blockage earlier in the week and carried on with my morning. I drove the hour north to pick up A and start our trek up to Dallas. We stopped for tacos and queso along the way. I took some pain meds for that persistent and annoying band of pain. A few hours later, we checked into our hotel, picked up our beauty boxes for the conference, and had a happy hour cocktail in the bar followed by sushi in the rotating tower.

Fast forward to 9p: CF changes on a dime. Suddenly, that pesky band of pain that I’ve absently noticed and ignored for the day is front and center. I can barely take a breath, much less a full breath, post-treatment. By 11p, I’ve laid in bed silently crying as the pain spikes up to an 8 and then back to a 6. It dawns on me that the band of pain is pleuritic pain. After texting multiple Cysters and weighing the pain with the inability to breathe, my recent 20% drop in lung functions and the fever I ran earlier, I finally make the decision to wake up A (who is for once sleeping peacefully, without interruptions, in the absence of her four kiddos) and have her drive me to the ER.

We arrive at the ER with this naïve idea that my CF clinic, albeit on-call at this late hour, will communicate with the CF clinic in Dallas. I’d already given A all of the information, phone numbers, and instructions for getting everyone, including my husband Adam, on the same page. Over the course of the evening and early morning hours, hundreds of texts and calls between A, Adam, and the on-call care team at home transpire in an effort to expedite the process.  Since it’s not my first rodeo with pleuritic pain, I’ve already determined before we even got settled in the ER that I desperately need instant-relief pain meds and a chest X-ray. Am I the only one who self-diagnoses? When you’re in and out of the doctor for the litany of health problems in addition to CF, you become the expert on your own body. I digress.

Over the course of the 12 hours in the ER, my port is accessed a total of four times, with one of them being a needle repositioning, before we get anywhere. To administer IV medication and run blood tests, two different nurses start dueling peripheral lines, one in my left hand and the other in my right elbow.  Meanwhile, other nurses attempt to get my port working, which won’t flush or draw back blood. My vein blows on one of the lines, and the other is dangerously close. I have a chest X-ray taken, a CT scan with contrast of my lungs, every blood test imaginable, an EKG, several rounds of morphine, two doses of vancomycin and two albuterol treatments.  I’m told I have a potential pulmonary embolism, a virus causing pleurisy, a mucus plug, or sepsis. Twelve hours in, and about 10 minutes after Adam arrives at the Dallas ER, my repeated requests to be moved to my home clinic, care team, and hospital are heard and I’m care-flighted from Dallas back home (Adam has to drive back home). Once admitted to my home hospital, they have me repeat nearly every test the Dallas ER did less than 24 hours prior as none of my medical records transferred with me from the ER. Five days later the medical records from the ER finally make their way to my home hospital and care team.  In the end, it was determined that I had a virus, which accounted for the difficulty in breathing, pleuritic pain, and fever. It was a very long, traumatic, stressful, and a trying 12 hours away from home. And, I missed my conference entirely, but that’s another story.

I’ve since had some time to reflect on this jaunt to the ER. The biggest takeaway for me – CF clinics do communicate but getting the ER to communicate with the CF care team is nearly impossible.  Having a port is a blessing, but it requires orders from your doctor, not just any doctor, to access and use heparin or cath flow in the event that it’s not working properly (or, in my case, repeatedly accessed incorrectly).  I learned that complaining of chest pain at a new hospital where none of my medical records are accessible means a round of tests to rule out heart problems, despite knowing that it’s my lungs. I learned that transferring medical records from one hospital to another is a royal pain in the you-know-what.

Hindsight is always 20/20, but I know I could have avoided the entire debacle if only I had heeded my inner voice the morning I left for Dallas when I first felt the band of pain around my lungs.  For me, it’s often hard to gauge when it’s important to say no and upend plans, especially when it impacts friends and family around me. If a trip to Walgreens completes a vacation in my house, am I an overachiever for my trip to the ER?

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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A Dutch Company on the Quest Against Cystic Fibrosis

An interview by:  Clara Rodríguez Fernández

Daniel de Boer founded ProQR in 2012 following a strong determination to improve the lives of people with cystic fibrosis. We started ProQR Therapeutics for a very personal reason,” he told me. “Eight years ago, my son was born, and diagnosed with cystic fibrosis. At that time, I was a serial entrepreneur in IT. I decided to make a career switch and start a company to develop drugs for cystic fibrosis, but then also for other genetic diseases.”

One would think that a person without a background in biotech might have it difficult to succeed, but de Boer is not the only to have so far successfully undertaken this endeavor. Over in France Karen Aiach built Lysogene to treat her daughter’s rare genetic disorder, while in the US the story of John Crawley and his company Amicus Therapeutics, founded to help his two children’s diagnosis, went so far as to inspire a movie. The determination and motivation of these parents seem to overdrive any challenges they might have faced because of their limited experience.

De Boer set out to create a business plan for his new company and found out that there was already quite a lot of activity, especially in approaches using small molecules or gene therapy.“We decided that we really wanted to add something new to the space, and take a completely novel approach.”

So he started looking for a new technology, and he found it. “Around that time, I met for the first time with some people in biotech, including the CEO at Alnylam, John Maraganore, and we talked about how they used RNA approaches for genetic diseases,” says de Boer.

Technologies targeting RNA are quite new compared to those that target DNA such as gene therapy. But RNA-based treatments have started to gain traction in the last few years. There are multiple ways that RNA can be used as a therapeutic, but its distinctive advantage over gene therapies and the likes is that it does not permanently change our genetic makeup, making it possible to reverse its effects.

Today, RNA technology is being tested in multiple rare diseases caused by genetic mutations, such as hemophilia, porphyria, or iron overload disorders. I thought, ‘if you can do that for all these other genetic diseases, why not for cystic fibrosis?’” says the Boer. “With that in mind, we started ProQR.”

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Exercise for Life Scholarship

When it comes to #CF, exercise saves lives — and now it can help you earn money towards your education. BEF’s Exercise For Life Scholarship will be awarding $10,000 scholarships!
All applicants are required to complete a daily run log from March 12th – June 1st and should be training for the 1.5-mile qualifying run. Candidates will be judged on the basis of time. Get ready to put those miles to use!
Deadline: June 1, 2018
Amount: $10,000
**IN ORDER TO QUALIFY, YOU MUST START YOUR TRAINING LOG ON MARCH 12TH**

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.

Three Ways CF Helps Me in My Career

Guest blog by: Reid D’Amico

Living with CF is hard. As I’ve gotten older, I’ve learned to pivot with many of CF’s new challenges. This has largely been an iterative process of successes and failures with plenty of feedback, patience, and assistance from friends and family. However, I’d like to focus on a few elements of CF that I believe have augmented my professionalism. These are elements that have taken time to develop, and are still being developed, but I believe that CF has provided a solid foundation for this professional growth. Continue reading Three Ways CF Helps Me in My Career

CF Roundtable invites you to write for the upcoming issue!

CF Roundtable invites adults with CF to write for our Spring 2018 issue. All submissions are due on March 15th.

The Focus Topic is “Maintaining Mental Health With CF”. Some questions to ponder as you write are:  Does your CF affect your mental state? What do you do to deal with it? Do you have any information to share with our readers on how to deal with depression or other mental conditions that are caused by having CF? Continue reading CF Roundtable invites you to write for the upcoming issue!

Introducing Jerry Unplugged!

We are thrilled to announce that Jerry Cahill has launched, Jerry Unplugged, a new blog segment on his site.  Jerry is a Delta F508 and R117H #CF patient who is post double-lung transplant by 6 years this April! Not only is Jerry an advocate for #CFAwareness, but he is a coach, athlete, and friend! Join him on his journey as he shares his insights, experiences, and explains why he cannot fail❗
Stay tuned for much more of #JerryUnplugged!

Read the first blog here: http://www.jerrycahill.com/who-am-i/

Continue reading Introducing Jerry Unplugged!