We are just one week away from the first-ever CF MiniCon, a virtual event for adults with cystic fibrosis age 18 and older that will focus entirely on transplants -- no matter what stage of the transplant journey you're in.
The transplant world can be a scary, nerve-wracking, and uneasy place. Whether you are contemplating a transplant, awaiting a transplant, or have already had one, CF MiniCon: Transplant will allow you to connect with others, find encouragement, and voice your concerns.
One of the sessions we are most excited about is the keynote event, which will feature four panelists who were carefully selected to share their transplant experiences and serve as a sounding board for your questions during a live question and answer period. Like us, the panelists are involved in this CF MiniCon because they want to help others, just as each of us was helped through our transplant journey. Here, they share why they're participating and what attendees have to look forward to.
April Hansen is a graphic designer living in Brooklyn, N.Y., who received her double-lung transplant at Duke University Medical Center in December 2013. She is currently listed for a kidney transplant.
“I've always believed that knowledge is power, and I believe that by getting such different transplant experiences together we can all learn from what we've all been through, and what we've all accomplished and struggled with. Getting all those different stories helps to give people an idea not of what to be scared about, but what to be prepared for and what to think about.”
Russ Jackson is a 59-year-old who received a double-lung transplant in May 2003 at Duke University Medical Center. Russ is a member of the board for the Cystic Fibrosis Foundation Carolinas Chapter - Charlotte and has participated in five Xtreme Hike events, hiking up to 30 miles in one day to raise funds and awareness for CF.
“I'm excited to share that transplant can be successful. When I first heard about transplant 25 plus years ago ... I didn't want to hear it. I was going to be the guy that was going to beat this thing. For years and years and years, I just denied that I was going to have to go the transplant route.
The more you realize that the information is out there, there are success stories, and there are things you can learn to do -- and not to do -- from these folks who have had that experience, the more informed you'll be, the more encouraged you can be and realize that at some point it may become your only solution. So, be encouraged that it's an option.”
Jerry Cahill, the panel moderator, is 60 years old and received a double-lung transplant five years ago. He is a CF Ambassador at the Boomer Esiason Foundation, where he leads its scholarship and grants division and is the founder of Team Boomer, which is dedicated to encouraging exercise among people with CF.
“Transplant is something that I think a lot of people get hit with very quickly. It's important that people start early, that people are [as] educated and well versed as they can be. Why we're coming together is so we can share our experiences and answer questions so that people have a smoother process going forward when they go into transplant. They should go in there like this is just another step in the process of cystic fibrosis.”
Kaelyn Thompson is a two-time, double-lung transplant recipient and bronze medal winner at the Transplant Games of America. She received her first bilateral lung transplant two weeks after her 22nd birthday in September 2013, and her second in July 2016.
“I'm excited to share my story in [the] hopes that it might change someone's mind that might be against it at first. I know I was, because I didn't know anything about transplant. I didn't have anyone to talk to and I only knew one person who had had a transplant before me. It was scary for me. But it's okay to be scared, there are a ton of people that will support you.”
If you are an adult with CF who is interested in connecting with and learning from others about transplants, join the conversation on May 21 at CF MiniCon: Transplant. You can register now through May 18 at CFF.org/MiniCon.