CF campaigner ‘overwhelmed’ by donations for lung transplant

Fundraising page started for Orla Tinsley’s operation has gathered more than $50,000

Cystic Fibrosis campaigner Orla Tinsley. Photograph: Alan Betson

Cystic Fibrosis campaigner Orla Tinsley. Photograph: Alan Betson

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A GoFundMe campaign started for Cystic Fibrosis campaigner Orla Tinsley, who is in need of a double lung transplant, has gathered nearly 900 contributions totalling more than $50,000.

Ms Tinsley has spent years campaigning for better treatment for Cystic Fibrosis (CF) patients, and has written extensively about the condition for The Irish Times since 2005.

CF is an inherited chronic disease that affects the lungs and digestive system of about 1,200 children and adults in Ireland.

Her friend and fellow writer Belinda McKeon set up the GoFundMe page to cover the costs associated with a double lung transplant, which Ms Tinsley needs after going into respiratory failure last year.

The page had a goal of raising $50,000, which it has now exceeded.

Early on Monday, Ms Tinsley thanked donators and said she was deeply grateful for the support.

“I am overwhelmed by the love and support,” she said in an Instagram post, accompanied by a screenshot of the GoFundMe page.

“You are all incredible. I am deeply grateful. I’m going to print the positive msgs and create a wall of positivity so that love and support helps keep me strong. I will fight harder knowing you are there.”

Ms Tinsley’s activism drew national attention to the shortcomings in the level of care for CF patients in Ireland and led to the opening of a dedicated CF unit at St Vincent’s Hospital in Dublin in 2012.

In 2015 she wrote about the effect which the drug Orkambi had on her, calling on the Government to make it available to patients here.

“I realised I no longer lived from month to month, beneath the weight of constant intense medical monitoring and painful evaluation of every single action I took and how that might affect my energy and health for the day,” she wrote.”

“I lived in this explosion of the now. . . This was a miracle for me.”

The drug Orkambi was approved for funding by Minister for Health Simon Harris this year after an extensive campaign by patients and their families.

Ms Tinsley lives in New York after taking up a scholarship at Columbia University in 2014 and is now on a waiting list for a transplant at Columbia New York Presbyterian Hospital.

Writing on the fundraising page, Ms McKeon said: “There’s no way of sugar-coating this: Orla needs this transplant, it’s obviously a very serious surgery, and while her health insurance will thankfully cover the transplant, there are aspects of care and recovery (including copays, mediation, transport, oxygen and much more) which are not covered by insurance.

“After-care is crucial, and it’s expensive. That’s where we can help.”

She said: “Orla’s transplant team have advised that she should have a large contingency fund in place which can be put towards these costs.”

Writing on the GoFundMe page herself, Ms Tinsley said: “I am older now and my time is running out. Unless I get a life saving lung transplant I will die.

“Transplant is about recovery and hard work afterward where I will have to rehabilitate and live with my new lungs. Hard work afterwards is what make the difference in survival.

“I need to stay close to the hospital for one year until I recover and work hard at rehabilitation and take on all the other challenges post transplant life bring. I am ready for this.

“But I need your help. I am so grateful to Belinda for being so supportive and taking the pressure off me at this time.”

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