- 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?
by Brennen Reeves
A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.
I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.
My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.
I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.
I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?
Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.
I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?
“7years. Brennen your body needs more time to heal”
or could it just be my body?
Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!
Who Am I?
Why I Do What I Do?
Jerry reviews the various leg stretches and workouts he uses during an extended hospital stay. By working out regularly and keeping his legs nimble and strong, he knows that, as soon as he leaves the hospital, he can get back on his bike and back to training for his next adventure. Always remember – Continue reading Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts
In this podcast, Jerry Cahill reviews several ways that he stays active in the hospital in order to keep his lungs clear and discusses the importance of holding on to your routine.
This video podcast was made possible through an unrestricted education grant from Gilead to the Boomer Esiason Foundation.
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 email@example.com.
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 firstname.lastname@example.org.
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!
Jerry Cahill, 5 years post transplant, shares the ups and downs of his journey as an organ donor recipient.
This podcast was made possible through an unrestricted educational grant from GENENTECH to the Boomer Esiason Foundation.