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.
In the latest edition of The Path Forward with Cystic Fibrosis, Dr. Arcasoy from Columbia University Medical Center is back to explain what happens after a patient has a double lung transplant. He discusses pain management and the post-transplant care team in detail.
Here’s what to expect immediately pre and post-surgery:
Post-surgical care including pain management
Medical care that includes antibiotics, antirejection medication, and anti-infection medication
Psycho-social recovery assistance
Dr. Arcasoy also explains who your post-transplant care team is and what they do… it’s a lot, so here’s a cheat sheet:
WHO: Medical Transplant Pulmonologist and the Coordinator
Patients will meet with their Post-transplant team once a week for three months, then every 3-4 weeks for a year. At every meeting, the following occurs:
Pulmonary function test
Conversation to review medications and overall health & wellness
Follow up lab review and medication changes
The schedule for bronchoscopies vary depending on the center, and additional testing can be added at any time deemed necessary.
Remember – every patient’s experience is completely unique! Do not get discouraged; and work with your care team to prepare both mentally and physically for the bumps along the way.
This video podcast was made possible through an unrestricted educational grant from Columbia University Medical Center and the Lung Transplant Project.
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
Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase
We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here: https://vimeo.com/ondemand/upforair.
About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.
The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.
Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.
Almost every summer, since my transplant, I deal with some kind of low-sodium disaster and almost always need to go to an ER to get a saline IV, which, for me, is only temporary fix. I need to get ahead of the curve, so to speak and salt-up! Continue reading Trying to stay hydrated during the heat
In this podcast, we hear from Jerry’s CF medical team about his journey with CF and life post-transplant. They share how they work as a team to make patients with CF feel cared for and supported. For Jerry, because of the extensive amount of time he spends with them, his doctors and nurses at Columbia University Continue reading CF Podcast 159: Cystic Fibrosis Medical Support Team