For those of you who didn’t know Claire Wineland, she was amazing. She was amazingly strong. Amazingly fierce. Amazingly ready to take on her life. Even with cystic fibrosis. She was determined to live a life that mattered and inspired countless people along the way. She will be greatly missed.
“On Sunday evening, after being taken off life support and using the newly transplanted lungs she received just one week earlier, Claire took her last breath. The cause of death was a massive stroke she suffered soon after the transplant surgery. She was 21.
A quarter of Claire’s life was spent in the hospital. The medical team that tended to her became family. She played hide-and-seek with nurses and left explosions of glitter in her wake. She watched one of her doctors squirm as he gave her the safe-sex talk. She took great care to decorate her hospital room so it felt and looked like home.”1
According to the Cystic Fibrosis Foundation, more than 30,000 people in the United States and more than 70,000 people worldwide, have cystic fibrosis. And the median survival age is only 40. (In the 1950s, surviving long enough to attend elementary school was rare.)
The disease, which is genetic and progressive, creates an overabundance of mucus in the lungs. This mucus traps infections and blocks airways, complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure. There is currently no cure (although a trial for a certain type of CF is ongoing) but daily breathing treatments can help with symptoms and complications. And if someone is able, a double-lung transplant can add years to their life.
When Claire became a legal adult she told her parents she had no intention of getting a double-lung transplant; while she took the gift of life and her health seriously, she didn’t take herself too seriously (she even escaped once from the hospital so she could attend a Bernie Sanders rally). Her greatest wish was that her foundation (which she set up at 13) would live on, even in her absence. If you are able to contribute, please do.
Clair loved to travel for speaking engagements and at a TEDx talk she gave last year, made a point of saying how cystic fibrosis helped give her a quality of life. “Life isn’t just about being happy. … It’s not about how you feel second to second. It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”2
After a steep decline in her health earlier this year, Claire changed her mind about the lung transplant. But, “To get on the list for new lungs, she had to be sick enough to need them, yet strong enough to withstand the surgery and recovery. Some people worried that she’d waited too long and wouldn’t be given the chance at continued life.”3
(Clair was my kinda girl, she had the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy” tattooed on her ankle!)
However, in late May, she made the list and shared the exciting news with her social media followers around the world. On August 26th she got the call that her surgery was a go.
“The nine-hour surgery went well, and her mother reported that the lungs were working great. But not long after the successful surgery, hope turned to fear. Claire suffered a stroke when a blood clot cut off blood flow to the right side of her brain. She never emerged from her medically induced coma. Despite emergency surgeries, and what her mother described as “Herculean efforts” to try to save her, the daughter she knew was gone. Given the severity of the stroke and Claire’s advance directive, it became clear that it was time to let her go. She passed away peacefully, with her parents by her side.”4 (The United Network for Organ Sharing reports that less than 3% of lung transplant recipients have a stroke between the surgery and hospital discharge.)
