- When should a CF patient consider a lung transplant?
- When lung function decreases to 30% or below
- When there is an increased infection resistance
- When exacerbations resulting in ICU hospital stays become frequent
- When a patient experiences frequent lung bleeds and collapse
- What is the transplant listing process?
- What is the transplant evaluation process?
- What are some testing and evaluation obstacles, both mental and psychosocial?
- What is dual listing?
- What happens when you are actively listed?
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 firstname.lastname@example.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 email@example.com.
We look forward to working with you to support virtual connections for people living with CF.
Drucy Borowitz, M.D.
Vice President of Community Partnerships
We’re still celebrating Jerry Cahill’s 5 year post transplant anniversary by giving away his documentary, Up For Air, for FREE through April 30th!
Use discount code “BigAir” to stream!
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
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:
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.
Learn more about Up For Air here.
By Stephanie Rath
My father committed suicide when I was four. Being an only child it was just my mom and I. Thankfully we had help. We moved from North Carolina and into the basement of my grandparents. Being a single mom my mother needed help back Continue reading Asking For Help–Guest Blog
My husband and I usually read the Social Qs column on Sundays in the New York Times. Then we glance at the rest of the Styles Section. He saw that the Modern Love column was about a double lung transplant that almost destroyed a Continue reading Modern Love Column in NY Times–Worth Reading
Morrell M, Pilewski J; Clinics in Chest Medicine 37 (1), 127-38 (Mar 2016)
Lung transplantation is a viable option for many patients with cystic fibrosis (CF) and end-stage lung disease. Criteria for transplant in patients with CF vary widely among transplant centers in terms of acceptable Continue reading Lung Transplantation for Cystic Fibrosis
In 2011 I was referred to the transplant team at my hospital to be evaluated for a bilateral lung transplant. I was told I was too healthy (yay) after a year of tests and to come back every six months until my status changed. Since I was not an urgent case, I took my time getting the testing done. I was able to relax and get Continue reading Deciding if Transplant is Right for Me