Jerry Cahill’s CF Podcast: The Pre-Transplant Process with Dr. Emily DiMango

The latest video in The Path Forward with Cystic Fibrosis series, Dr. Emily DiMango, Director of the Gunnar Esiason Adult CF Program at Columbia University Medical Center, discusses the lung transplant process through the lens of a CF doctor.

First, she reviews the importance of CF patients participating in drug trials in order to start life-changing medications sooner. She then answers the following questions:

· What does pre-transplant management look like for a CF patient?
· When is the right time to be referred to the list?
· What is the referral process like?

Finally, she reiterates the importance of well-rounded treatment that includes physical health, nutritional health, and emotional health.

This video was originally posted on JerryCahill.com

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

Subject: CF MiniCon: Transplant – May 21 Virtual Event for Adults With CF

This year the Cystic Fibrosis Foundation will be supporting three virtual events created by and for adults with CF to connect and share their experiences. In 2016, a group of adults with CF created BreatheCon, a two-day event that had a powerful effect in connecting community members. This year, in addition to BreatheCon, we are also introducing two CF MiniCons, which are one-day, topic-specific virtual events.

While last year’s BreatheCon was a pilot program, with 188 attendees and limited mostly to word of mouth promotion, this year we encourage you to spread the word about these virtual events to all adults with CF. Please note these events are open only to adults with CF (not to Care Center staff).

CF MiniCon: Transplant – May 21

On Sunday, May 21 from 6:00 – 9:30 p.m. Eastern Time, members of the CF community will be hosting CF MiniCon: Transplant, where adults with CF can have an honest and open dialogue about the transplant process.

This virtual event will include presentations, group chats, and small group video breakouts on a variety of aspects of transplantation that are unique to people living with CF. Discussion will focus on lifestyle, not on medical topics.

All adults with CF age 18 and over are welcome to attend CF MiniCon: Transplant. Registration is open now through May 18 at www.cff.org/minicon. For questions or more information, email  breathecon@cff.org.

Additional 2017 Events
Please be on the lookout for additional details on CF MiniCon: Young Adult Transition (July 22) and BreatheCon 2017 (September 8-9) in the weeks leading up to the events. If you would like to recommend someone from your community who has CF and is age 18 or over to help plan these events, or if you have any questions, please email Danielle Lowe Cipriani at dcipriani@cff.org.

We look forward to working with you to support virtual connections for people living with CF.

Thank you,
Drucy Borowitz, M.D.

Vice President of Community Partnerships

What it Means to Donate Life

By Jen Weber

Almost seven years ago I took the bold step to a new life and underwent my first lung transplant. My first transplant and freedom to breathe easier offered opportunities for me to run Continue reading What it Means to Donate Life

‘Tis The Season

By Piper Beatty Welsh

The holidays are a time for miracles. We see it everywhere we turn, whether in the birth of a newborn baby, or the oil that lit the Temple light, or just in the warmth of family and friends or the gleam in a child’s eye. The holidays are a season of gathering; a season of celebration, generosity, and forgiveness; and a Continue reading ‘Tis The Season