We all complain a lot – bad election, bad breakup, bad breakout, bad weather, bad professor, that kind of thing. We think it’s high time to go into 2017 thankful for our many blessings and recognizing the great things in all of our lives. Maybe your bads are just not so bad, and with faith, maybe even the really bads can get better. To help you get your gratitude mindset going, we are thrilled to share the story of a true inspiration and motivator, Avery Engleman. Avery is in so many ways just your average South Florida teenage girl, enjoying hanging with friends, playing soccer, and living life in the Sunshine State. And yet, she is so much more. Born with cystic fibrosis, Avery underwent a life saving bilateral lung transplant this year. She’s chosen to share her story and her literal journey to breathe to bring hope to others and to help raise awareness about cystic fibrosis and the importance of organ donation.
What is Cystic Fibrosis?
CF is a genetic disease that affects approximately 30,000 children and young adults in the US today. CF affects the respiratory, digestive and reproductive tracts but mainly the lungs, pancreas and liver. My body produces thick mucus like I have a cold and it clogs everything.
What was the hardest part of growing up with Cystic Fibrosis?
I grew up as normally as possible, playing sports, going out with friends, attending school, etc. In addition to all of that, I had doses of medications and breathing treatments every morning and night that became routine for me. The hardest part was that I never could get a break from it all and that most of my friends abandoned me when I get extremely ill and couldn’t participate in activities like they could.
Was it scary knowing you were going to have a lung transplant?
Truthfully, I felt very prepared going into the double lung transplant. I felt very confident in my surgeon and the surgery itself so I was surprisingly not too worried.
How are you feeling now?
I am feeling fabulous and healthy now! I am breathing at over 100% lung capacity with no supplemental oxygen. I can run and play sports again and it feels amazing!
What inspired you to share your story?
Everyone I knew in life knew I was sick. No one knew the extent of my issues until I shared what was really happening to me. I needed to do this through an honest depiction of my life to spread true awareness for Cystic Fibrosis and Organ Donation.
How have you been able to help others through “My Journey 2 Breathe?”
I believe that I have helped people realize the importance of life and to not take it for granted. Live everyday to the fullest and appreciate what you have! Also, recognize how important it is to donate life to others in need like me.
What are your hopes for your future?
I hope to live a long fulfilling life and earn a college degree as a nurse to give me to all of those who were there for me!
What advice do you have for anyone who is trying to support a friend with a serious illness? What things have friends said (meaning well) that you wished they hadn’t? What are some really great things that your friends have done for you?
I would just say to be there for them and stick by them no matter what. Try to understand what it would be like in their shoes. Some things said to me that were meant well were, “Oh my gosh you are so skinny, I’m jealous.” What they didn’t know was that I was struggling to gain weight to survive. Another thing that bothered me a lot but was meant to be sincere was, “How are you feeling?” Hearing those words over an over for a terminally ill patient like myself was difficult because as much as they were trying to be compassionate, they knew how I was feeling (not good) and I didn’t want to say bad because I was trying to stay positive. Some great things friends have done for me were talk to me like I was normal and keep me in the loop about their lives. Most people think that telling me about how amazing their lives were would make me upset, but truthfully I just want to be treated like anyone normal.
With so much emphasis on body image these days, we love that you’ve talked about being happy to actually be able to gain weight. Would you share a little bit about that?
I was never able to gain weight. Growing up, food was always a priority or a “task” that needed to be completed. It was not fun to eat, especially when I got increasingly sicker and lost a lot of weight. Food was a struggle and I thought back then that if it was allowed, I would never want to eat again in my life. After my surgery, I started gaining weight again and food became fun. I love the way I look and how I feel and I especially love to eat! I weighed 77 pounds and now weigh about 110 and couldn’t be happier to be “fat”!
How can we help?
Donate to: Cystic Fibrosis Foundation or directly to my fund –https://www.crowdrise.com/averyengelmanmyjourn/fundraiser/averyengelman
Participate in the upcoming walk I am organized- Great Strides in Boca
SPREAD AWARENESS FOR CF AND ORGAN DONATION!