If you watch anything this week, let it be Orla Tinsley: Warrior. Orla, a life-long sufferer of cystic fibrosis, made the harrowing documentary for RTÉ over the course of 14 months. During this time, she campaigned tirelessly for more people to consider organ donation; while her own life hung in the balance.
From an early age, the Kildare-native was in and out of hospital for vital cystic fibrosis treatment. Her parents were honest with her about the illness from the get-go. “That helped me be comfortable with it and just deal with it, and get on with things,” she said. CF is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,300 children and adults in Ireland. The average life expectancy for someone with CF in this country is 30-35.
Related: I was diagnosed with Cystic Fibrosis at 36
Orla has been one of Ireland’s leading campaigners for improved services for people with cystic fibrosis; all the while making sure to carry on with her life. She travelled to New York to study for a masters in creative writing at Columbia University. Her illness, sadly, put those plans on hold. She became seriously ill and was forced to spend time at the New York Presbyterian Hospital instead.
— Orla Tinsley (@orlatinsley) September 16, 2016
A positive frame of mind
Life-threatening as it was, Orla maintained a positive attitude; something she’s been commended for across social media for years. “I feel I’ve had a great life,” she said at the time. “I’ve accomplished what I wanted to accomplish. Everything after that, everything here in New York, was an extra thing; sometimes I knew exactly what was going on, and other times I had no idea what to make of it. But it was beautiful. And it was worth it.”
Orla spent nine months on the lung transplant waiting list, with six devastating setbacks leaving her on life support. Finally, just before Christmas last year, she and her family got the news they’d been waiting for.
This morning we got a call but I wanted to wait. Well, here it is, Lucky Number7. I’m not afraid..Please send love, prayers and best wishes. Double lung transplant is a go! Love love love #BEATCF
— Orla Tinsley (@orlatinsley) December 21, 2017
Supported by her parents, Brian and Patricia, Orla went into hospital for a life-saving double-lung transplant on 21st December 2017. Following the operation’s success, Orla returned to university in NYC and is calling for people to consider organ donation more than ever.
“I have a kinship with my donor; this person I’ve never met,” she says towards the end of the documentary. “But she saved my life. Her decision, and her selflessness to become a donor saved me. I’m very aware that I’m here because of that deep and difficult time for another family. I don’t take it for granted.”
The post-transplant road isn’t easy; Orla will continue to need hospital treatment as time goes on. But she is determined to fight on, like a warrior.
The public response
Since the documentary aired on RTÉ One last night, Orla has been inundated with messages of support from the public. “I have no words for the response tonight,” she began on Twitter. “I am in awe of the way people are reaching out, understanding and committing to becoming donors. I appreciate and I’m reading every single story and response. Thank you for being part of this and making a difference.”
I have no words for the response tonight. I am in awe of the way people are reaching out, understanding and commiting to becoming donors. I appreciate and I’m reading every single story and response. Thank you for being part of this and making a difference. #Warrior https://twitter.com/IrishKidneyAs/status/1041841610089275392
— Orla Tinsley (@orlatinsley) September 18, 2018
“I haven’t been so moved by anything in a long time. Orla and her family are such brave and beautiful people – hugely inspiring,” one Twitter user said. “Humbling, dignified, enlightening, inspiring TV. Well done on such bravery. And your donor: a hero too. Thank you for sharing your story,” another added.
A third Twitter user advised, “To get a donor card – free text DONOR to 50050. As a family who still has our dad around because someone carried a [donor] card and had the conversation, I can’t implore you enough to think about it. We think of our donor every single day. Orla Tinsley – thank you. A true warrior.”
For more information on donor cards and where to get one, visit organdonation.ie.
Photo: Orla Tinsley via Instagram