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.
To read Jerry’s letter to Chris, please click here.
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.
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!
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.
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 email@example.com.
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: