Health

CF campaigner Orla Tinsley on life support in US hospital

The 30-year-old from Kildare says she is ‘fighting intensely’ while waiting for a double lung transplant

Orla Tinsley has received six calls about a possible double lung transplant to date, but the donors were found not to be a match. File photograph: Alan Betson/The Irish Times
Aine McMahon
Wed Dec 20 2017 - 10:08

Cystic Fibrosis campaigner Orla Tinsley has said she is on life support after finding out potential lung donors were not a match.

Ms Tinsley, who is from Co Kildare but living in New York, has received six calls about a possible double lung transplant to date, but the donors were found to be unsuitable.

She called on the public to become organ donors in the run up to Christmas and to carry organ donor cards.

“Please carry a donor card and let your family know your wishes. Then you can live life and give life. Up to 8 people can be saved. I am currently on life support fighting intensely. Love x #beatcf #cysticfibrosis.” she tweeted.

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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.

She also shared a photo on Instagram and said her family are with her while she waits for her seventh call about a double lung transplant.

“This is a picture of my oxygen mask. It feels pretty apt to update with this as my entire focus now is on breathing. I am struggling a lot but I am strong and hopeful. You see, I’m a ninja. They don’t quit and they are adaptable to all situations. They karate chop their way with stealth, fancy foot work and a determined mind.

“I have an incredible team @nyphospital who are working intensely around the clock to keep me alive. We are hopeful that lungs are coming. My family are with me and we just need those lungs to come. Thanks everyone for your love and prayers and best wishes,”she wrote.

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.

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