By Mark Tremblay
Let’s face it, if you have CF, love someone with CF, or have a family member with CF, transplant is looming somewhere out there in the future like an approaching storm cloud that you hope doesn’t arrive too soon. For some, it’s real and they’re in the storm now, for others they’ve survived it and they’re adjusting to the new normal in the wake of a new life after transplant, and still, for others, it’s little more than a concept floating in their heads.
Some of you may question the timing of this Transplant Mini-Con at the dawn of a new day in CF treatment in which a new powerful weapon, Trikafta, may begin to turn the tide for many in our community battling this disease. However, I would argue that this is the perfect time to learn more about this critical treatment option as so many of us are experiencing optimism, hope and renewal in our lives as a result of this and many other advances in medical science. Whether you’re in a situation in which you’ll likely benefit from the new blockbuster drug or you’re still waiting for the next big breakthrough, take advantage of this great opportunity to learn how the technological advances in transplantation have improved the outlook and brought new hope to those on the journey.
This online event which is open to CF patients, families and care-givers (age 16 or older) will be Thursday, Nov. 14, 2019, 7:00 - 10:45 p.m. ET | 6:00 - 9:45 p.m. CT | 5:00 - 8:45 p.m. MT | 4:00 -7:45 p.m. PT. Information sessions and panel discussions will feature medical professionals who, along with community members including those who have experienced transplant, will discuss elements of preparing for and thriving after a transplant.
As an added bonus the co-chair of the event has had great success post-transplant and happens to be one of the warmest, sweetest people you’ll ever meet, Dr. Patrick Smith (Duke Lung Transplant program) and many others with extensive knowledge of the process will also share valuable insights and wisdom about the journey, including:
· Mental and physical aspects of transplant preparation;
· Changes and expectations of the support system before and after transplant;
· Common existential concerns from people pre-transplant and post-transplant; and
· Challenges of and insight into the caregiver role throughout the transplant journey.
As an older CF patient myself, who struggles from time to time with depression, I tend to fill the gaps in my knowledge about CF, with often unsupported pessimistic notions and dark thoughts. Among the many negative notions I’ve stuffed in the back pockets of mind over the years, a few stuck out: Burkholderia cepacia is a death sentence, and transplant is a 50/50 crapshoot. Have you ever observed how many negative thoughts flood your mind when you've waited for an important, consequential event like that special someone to call after a date, your grades to be posted after that all-important organic chemistry exam, or your cultures to come back after you’ve previously tested positive for a resistant infection?
Regardless of how those events turned out, one thing is certain, the deluge of negative thoughts you had while waiting for the results did not bear out as you feared they would. By the way, I’ve known several CF patients whose cultures no longer test positive for Burkholderia cepacia after having had it for several years, and most of the transplanted CF patients I’ve known have had positive experiences. On the other hand, if you’re curious, Nicole never called to invite me to the Sadie Hawkins dance and I did poorly on the organic chemistry exam but the curve saved my bacon.
All that to say, don’t let another year go by filling your head with misguided ideas and your own negative notions about transplant, sign up for the Transplant Mini-Con below to hear from doctors, clinicians, patients, care-givers, and families who are intimately familiar with the transplant journey and can shine light where you’ve probably filled the void in your knowledge with darkness. https://www.cff.org/Get-Involved/Attend-an-Event/Virtual-Events/2019-CF-MiniCon-Transplant/
About the Author: Mark Tremblay is a director for USACFA. He is a 50-year-old CF patient diagnosed in 1970. He's led a 20-year career with the New York State Division of Budget and Department of Health. Currently, he works full time, living with his wife MaryGrace of six
years and stepson Sean in Albany, New York. He loves road cycling, motorcycling,
traveling, spending time with family and volunteering.