Today we meet a Kentucky local, Julie Ice. She is 49 from Crestwood Kentucky! Her favorite things are the beach, reading, playing with dogs, speaking on organ donation, and any crazy activities like skydiving, zip lining, fly fishing, etc! She’s living life to the fullest!
Her immediate household consists of husband, Roy, parents Gerald and Betty Browning, and two dogs- Hope and Koda Grace.
Other family includes two brothers, Alan (Tricia) and Cliff (Christi). Nine nieces and nephews, 6 great nieces and nephews! Sounds like holidays are sure fun!
“What best represents me is the ability to handle pressure with grace and dignity by having faith and courage to get through the tough times.”
Julie was diagnosed in 1995 at the age of 23. Before that, she was treated for asthma, bronchitis and pneumonia from the age of 18 months.
Her daily routine has obviously changed since transplantation in December 2011. I no longer do any breathing treatments or CPT. The amount of pills are the same, with the exception of one mg of anti-rejection meds.
She was never eligible for any trials or CF modulators. By the time the modulators for her genetic make-up were available, she had already transplanted.
Julie has moderate pancreatic disease, borderline severe kidney disease (due to transplant medications), bone density issues from long-term steroids, skin cancers ( anti-rejection meds), diabetes POST transplant and blastomycosis post transplant, causing her to lose 1/3 of her right ankle bone.
“I couldn’t be more pleased with the progress of treatments for CF in the last ten years. Watching my many friends on the new meds is exciting. I fully believe in another ten years, a complete control will be in the works.”
Julie has spent 20 years fundraising for Cystic Fibrosis. She decided several years ago, they had done all they could do.
“We reached our goal of having meds that truly affect the outcomes of CF patients. I now fundraise and am active in organ donation. I do this knowing I can no longer make a difference in the CF community, except prepare them for their future of organ transplantation.”
Julie is an inspiration to many CF families. She lives with a disease that was radically different when she was born or even diagnosed. The average life-span of those with CF is around 45 years. Julie has surpassed that statistic and gives hope to our families battling this life-shortening disease. Thank you for sharing your story Julie!