Recapping the last month of podcasts!

CF Podcast 198: The Art of Healing

In the latest Cystic Fibrosis Podcast, Jerry met with Dylan Mortimer – a 38-year-old artist who lives in New York City with his wife and two sons. As a CF patient, Dylan uses his art to represent his journey with the disease – and to inspire others in their battles to never settle for their diagnoses and keep hope alive past the difficulties they face.
The video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.

CF Podcast 199: Living Life after a Double Lung and Liver Transplant

Jerry Cahill chatted with Kathryn Norris about her journey with cystic fibrosis in his latest podcast. Diagnosed at 3 months, Kathryn soon moved back to her mother’s home-country, Spain, where she had a different experience growing up with CF. Because of socialized healthcare, she had a great deal of access to specific medications, but no access to more recently discovered treatments. In her hometown, walking to and from school helped her fit exercise into her daily life, as well as a number of extracurriculars including tennis, swim, roller blading, and more.
Tune in to learn more about Kathryn – her path with CF to a double lung transplant and a liver transplant, why she is studying to be a personal trainer, and how she copes with her disease.
This podcast was made possible through an unrestricted education grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 200: Being a CF Mom

Today’s CF podcast features Megan Neville – a CF mother and caregiver. She shares her story – from learning of her son’s diagnosis to dealing with the guilt of that news to how she now deals with a teenager who has a chronic illness. She reflects on the importance of having an incredible support system of family and friends surrounding her and how raising a CF child can be a team effort.
Tune in to learn more about Megan and her journey as a CF mom.
This video podcast was made possible through an unrestricted educational grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 201: Being a Lung Transplant Coordinator

Today’s Cystic Fibrosis Podcast features Nilani Ravichandran, current AVP for Cardiothoracic and Vascular Services at Beth Israel Medical Center, who spent over 17 years as a lung transplant coordinator at NY Presbyterian/Columbia University Medical Center. She sat down with Jerry Cahill to explain what transplant coordinators do, how they work to minimize infection and rejection, and how they teach their patients to care for their new organs. Nilani says that a transplant coordinator’s goal is to give his or her patients the best quality of life possible when they reach the end stages of their diseases.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

CF Podcast 202: Being Grateful

With the holiday season approaching, everyone starts to think about why they are grateful. In this video, a number of post-double lung transplant recipients share their reasons for being grateful, how they honor their donors, and more.
Don’t forget – registering to be an organ donor can save a life! Register today: donatelife.org.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

You are invited! CF Transplant MiniCon

Another virtual event for our adult CF community!

About CF MiniCon: Transplant
This virtual event will explore all stages of the transplant process and allow those who are considering a transplant, preparing for transplant, or post-transplant to connect with others, learn more about the process, and share their experiences.

The CF MiniCon will feature a keynote presentation followed by storytelling panel discussions and small group video breakouts.

Check out the agenda at https://cff.swoogo.com/minicontx/agenda and register now, https://cff.swoogo.com/minicontx.

This event is open to adults with CF, their family members, and caregivers age 18 or older.

WEDNESDAY, AUGUST 15
6:30 – 10 p.m. ET | 5:30 – 9 p.m. CT | 4:30 – 8 p.m. MT | 3:30 – 7 p.m. PT

You got the call for transplant… Now what happens?

Cystic Fibrosis Podcast 182:
The Path Forward with Cystic Fibrosis
In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. D’Ovidio and Dr. Arcasoy from Columbia University Medical Center explain what happens once a patient receives the official phone call for his or her transplant.
They explain dry runs, the transplant surgery, a patient’s first breath, and more! Keep in mind; the overall transplant experience varies greatly among patients, as each case is completely unique.
This video podcast was made possible through an unrestricted educational grant from Columbia University Medical Center and the Lung Transplant Project.

I’m on the transplant list, now what?

In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. Selim Arcasoy from Columbia University Medical Center discusses what happens once a patient is on the transplant list.
The first three major steps are:
  1. Create a strict exercise program with the hospital rehab center and integrate it into the patient’s schedule.
  2. Meet with a nutritionist in order to maintain proper weight.
  3. Educate! Meet with the care team in order to understand the entire process – both pre and post transplant.
The transplant process is a long one – and thoroughly detailed – in order to increase the chances of success. Tune in to learn more from Dr. Arcasoy.

This video podcast was made possible through an unrestricted educational grant from Columbia University Medial Center and the Lung Transplant Project.

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