33-year-old Caitlin O’Hara was an inspiration to her community, sharing compassion with other sufferers while awaiting her fatal transplant surgery.YouTube

Following an eleventh hour lung transplant, 33-year-old Irish American woman Caitlin O’Hara passed away on Tuesday after a lifelong battle with cystic fibrosis. Caitlin is remembered as a true inspiration to everyone she met, and had been writing beautifully honest, meaningful essays about her condition in order to help others with the same diagnosis. She had been on life support for two weeks prior to the transplant, which resulted in complications, at the University of Pittsburgh Medical Center.

Caitlin, who was diagnosed with the incurable lung disorder on her second birthday, was born to an Irish father, Nick O’Hara from Co. Wexford; her mother, Maryanne O’Hara, is an acclaimed American author. Caitlin was an only child and lived most of her life in Boston and Ashland, MA. After her diagnosis, doctors said she wouldn’t live past twelve years old, but Caitlin defeated the odds. She said in her writings that she believed “you can summon unexpected strength from within, and get better.”

“She was really special: really smart, really funny, and very soulful,” her mother told the Boston Globe, adding that Caitlin considered pursuing a master’s in philosophy. “She got too sick to really pursue that, but she read deeply, and was only interested in reading good, complicated things.”

Caitlin’s intelligence allowed her a mastery of her disorder as well; she even filled a notebook with instructions for her nurses and doctors with information on how to take care of her while she was on life support. They were so detailed that a nurse asked her parents if Caitlin had been a physician herself.

In an essay she posted to the Cystic Fibrosis Lifestyle Foundation website while awaiting the double-lung transplant, Caitlin described her initial unease with the idea of the surgery, referring to an organ transplant as “a risky surgery, a hard recovery, [and] a complicated concept.” She had been on the transplant list for two years and eight months before undergoing the procedure. “Someone has to lose a life for you to get a chance,” she wrote. “As the old adage goes, there are no guarantees for anyone in life, and there is no guarantee that it will happen, that I will get to live an incredible life like I see my friends living.

“But without transplant, that life is unquestionably never going to happen. With that logic, I can’t help but feel that talking about transplant should be easier, and happier, because you are really talking about a chance for the most incredible miracle of science that we have access to. It’s not a failure, it’s an opportunity, and a gift, unlike anyone I’ve been offered before.”

But unfortunately the problems Caitlin faced were beyond the scope of philosophical questions. Her small stature made it especially hard to find a size match, and at the time of her surgery, her primary doctor had declared her the sickest cystic fibrosis patient in the country – he knew this because the United Network for Organ Sharing operates on a score system.

Her family believes the score system is flawed: the worse your score, the higher your priority is for transplant. However, it's also divided along state lines, via eleven regional districts, so even if a person has the worst score in the country, doctors in another region can deny the transfer and give the organs to someone locally.

Her loved ones believe the medical system of organ donation failed Caitlin, and are fighting for reform. They have all become strong advocates for organ donation as well; in blog posts and interviews, they have challenged the standard procedures for determining who receives available organs and which patients are considered for transplants.

In an interview with the Boston Globe, Caitlin’s boyfriend Andrew Sutryn stressed that it’s not enough to designate yourself as an organ donor on your driver’s license. Several websites, including organdonor.gov, provide instructions for how people can sign up for supplemental registries that ensure their names are in databases if a license isn’t nearby in case of death.

Caitlin and her boyfriend Andrew Sutryn

Caitlin and her boyfriend Andrew Sutryn

“This woman had a will to live,” Andrew said of Caitlin’s desire to work and travel in spite of her illness. “I met her four and a half years ago and I’m realizing now she saved my soul. I don’t want to know the man I would have been if I had not met Caitlin O’Hara.

"She understood life, I think, because of her illness, much deeper than any of us," he added. "I don't think that I can understand it, even after seeing it every day. That woman, I love her so much."

Caitlin’s mother Maryanne told the Boston Globe that although the illness presented Caitlin with challenges throughout her life, “she never complained, let me tell you. She never felt sorry for herself. She often said, ‘I would not change anything about having cystic fibrosis. It made me the person I am, it made me a better person.’”

Caitlin enjoyed a fulfilling life of travel, exploration, family and friends, and was an exceptional Art History student in her college years as well as a successful entrepreneur, having launched her own clothing line, in addition to working as a gallery assistant, and with Boston University affiliate Center for Digital Imaging Arts.

The Metrowest Daily News writes that Caitlin O'Hara was known to friends and family as a radiant woman – “a wellspring of love and sage advice” – but she was also a fighter, and hers is a fight the O'Haras intend to continue.

In addition to her parents and her boyfriend, Caitlin is survived by her grandmothers, Eileen Hore of Co. Wexford, and Florence Bavaro of Scarborough, Maine.