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Seriously ill Irish Cystic Fibrosis activist makes donor card appeal from intensive care

Orla Tinsley has been instrumental in raising awareness of gaps in CF services over the years.

Orla Tinsley
Orla Tinsley

CYSTIC FIBROSIS CAMPAIGNER Orla Tinsley has urged people to carry donor cards as she waits in an intensive care unit of a New York hospital for a double lung transplant.

The journalist and activist has long campaigned for more awareness about the condition which affects the lungs and digestive system.

She herself has been on a waiting list for a double lung transplant since she suffered respiratory failure last year.

She has been keeping the public updated on her search for a suitable donor, having received six calls from her medical team with potential donors, only for those to turn out not to be a match.

Yesterday, Orla tweeted an appeal to the general public, as well as an update on her own condition:

She had also earlier this month pointed out that even those carrying a donor card need to have a very serious talk with their family to explain why those are their wishes.

At the very beginning of December, she shared the emotional journey of being told there was a donor only to find out it wasn’t going to work out.

She wrote on Twitter: “I got a fifth call this morning. We are at the hospital now. We are thinking of the donor and the generosity that allowed the possibility that my life may be saved today. It is awe inspiring. I am thankful for my amazing team and all my support.”

Later that day, she recorded a setback:

“It’s not happening today. We are deflated but choosing to believe.We are strong, we are invincible.. we are woman! We have been singing. I am thankful for Mom, family, incredible medical team, friends, and mostly the selfless generosity of donors.

“Often when a double lung transplant does not happen another persons miracle occurs in the form of a single lung transplant. Not to mention other organs that have been donated.

“There is always someone waiting and hoping. Transplant is a miracle. Please consider carrying a donor card, talking to your family about your wishes. Your generosity can save up to 8 people. Live life then give life.”

Orla’s friends set up a GoFundMe page which would cover her medical expenses following a successful surgery.

According to the page which has now raised nearly €80,000: “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 mediation, transport, oxygen and much more) which are not covered by insurance.

For the first year after a transplant, a patient remains at high risk for rejection, and there are many costs associated with monitoring and guarding against this, as well as with recuperation in other ways. After-care is crucial, and it’s expensive. That’s where we can help.

Donations can be made to the Orla Tinsley transplant fund here

Read: Orla Tinsley: Honesty about death and purpose in life

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