Orla Tinsley, a campaigner for people with cystic fibrosis, thought her wait for a double lung transplant was over last weekend. But it was not to be.
On Saturday, Orla happily tweeted that she had got “the call” and asked her thousands of followers to keep her in their thoughts. “I am not afraid,” she wrote.
However, five hours later, she tweeted again.
“Unfortunately, it didn’t work out today, at the last minute,” she said.
Thanking everyone for their love and support, she wrote: “The next one will be right!”
Just before her 30th birthday last year, Orla went into respiratory failure — her lungs are only working at 24%.
Orla lives in New York, having taken a scholarship at Columbia University in 2014. She cannot fly back to Ireland because it would be unsafe for her to do so. She is on oxygen every day.
It is now almost five months since she was placed on the active transplant list at Columbia New York Presbyterian Hospital.
At the end of June, Orla wrote on her blog that, some mornings her heart was pounding when she woke up because it was working so hard, under pressure from her malfunctioning lungs.
She tried to do things for herself, but now even washing her hair is exhausting. She said she was lucky that her parents were supporting her.
While Orla remains optimistic that “good things are coming”, she knows she cannot wait years for her transplant, because she is too sick.
Orla follows other people with CF on Instagram, who have chosen to share their transplant stories.
“One woman is six weeks post-transplant and jogging already,” she said. “This electrifies me into reality again. Look at what can happen! Good things are coming!.”
A GoFundMe campaign, started for Orla over the summer by her friend and fellow writer, Belinda McKeon, has raised €70,000, well ahead of the €42,500 target.
Orla’s health insurance will cover the transplant, but many aspects of her care and recovery are not covered.
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