Two women, one who wouldn’t have lived to celebrate her second birthday and the other hours away from dying gave thanks for their lives last Tuesday and urged people to register as tissue and …
Two women, one who wouldn’t have lived to celebrate her second birthday and the other hours away from dying gave thanks for their lives last Tuesday and urged people to register as tissue and organ donors.
Thirty-two years ago Rachel Drane was born with a life threatening disease. Doctors did their best and Rachel’s family held on to hope through what she described a “long and difficult health battle.” She was placed on a waitlist for a liver and at just 14 months old a match was found.
“It is extremely special to be the recipient of an incredible gift that has allowed me to live my life to the fullest and be an active member of the donate community,” she said at a press conference at City Council Chambers.
By her side was a lineup of people brought together by Matt Boger of New England Donor Services (NEDS) to shine the spotlight on registering as an organ donor. According to NEDS, 1,325 lives were saved in New England by organ donation in 2022, a 7.9% increase from 2021 and thousands of more lives were enhanced through the gift of tissue donation.
Still the need is great.
Boger said 20 people die daily waiting for a transplant, a number he believes could be significantly reduced if more people would register as donors. He said 95 percent of registered donors do so through the Department of Motor Vehicles when they get or renew their license. Yet, and as simple as that is – a check off on the license form – only about 45 percent of Rhode Island drivers are registered donors. This puts the Ocean State at the bottom of registered donors in New England states. Maine is at the top at 57 percent and Colorado leads the nation with 62 percent.
Each donor is capable of saving eight lives, although on average the number is three. So far this year there have been 500 northeast donors, meaning about 1,500 lives saved. All donations come from persons who have died at a hospital.
“The DMV is committed to give everyone the opportunity to register,” said DMV Director Walter “Bud” Craddock. His goal is to increase the level to more than 50 percent of licensed drivers.
Terry Perrotta of Cranston is one of those who registered as a donor and never in her “wildest dreams” imagined she would be a beneficiary of the program.
Now, Terry said at the event, “everyday is Thanksgiving.”
The recipient of a double lung transplant, Terry spoke of how she was on death’s door and on total life support from pulmonary hypertension. Her family was told she had a 2 percent chance of survival.
“My organs were shutting down; the only option left was to remove life support. My family requested 24 more hours.”
Terry gave an abbreviated version of her story last Tuesday.
In a follow up interview she went into greater detail.
The story is one that includes remarrying her ex-husband, John Perrotta who is a comedian, and taking her from seemingly hopeless conditions to where she is now – seeing her grandchildren which she never thought possible.
Terry had no intention of remarrying John, but when he learned of her illness and offered to help by caring for the klds she accepted his offer. His commitment didn’t waiver. As she couldn’t make the trip by herself, John drove her to Cleveland in 2012 to get her listed for a double lung transplant.
“If it was not for John I would have been dead,” she said.
Then in January of 2013, Terry went into a coma. The family was told without a transplant she would die. A jet flew in to take her to Cleveland, however, her oxygen levels had fallen so low that she wasn’t expected to survive the flight. Extracorporeal membrane oxygenation (ECMO) a
method of life support that uses a cardiopulmonary bypass machine to temporarily assume the work of the heart and lungs in cases of extreme cardiac or respiratory failure was being used at Hasbro Hospital. It had never been used on adult patients.
They went for it.
Terry became the first Rhode Island adult to use ECMO. Ambulances at both ends of her flight to Cleveland as well as the plane were equipped with the system but even so she was close to dying.
‘We can’t give you hope where’s no hope,’ doctors told John. The docs put the odds of getting a matching transplant with so little time at 2 percent.
But the family held onto hope and requested Terry be kept on life support for at least another 24 hours.
At 2 a.m. on Jan. 30, 2013 her family received a call a donor had been located. But they didn’t know if it was a match. Another call followed five hours later with the news the “lungs were a perfect match.”
Terry welcomed the chance to tell her story as “living proof” of how a simple process as registering as an organ donor saves lives and can mean so much.
“Since my transplant,” she said, “I’ve been able to see my children graduate college, get married and meet my grandchild.”
She makes it sound simple, but it wasn’t. After being in such an extended coma, she was unable to walk. She needed to regain strength. Terry could have gone on disability, but she went back to the accounting firm where she had worked prior to her illness. The firm has since changed hands and Terry has left.
Others at the press conference spoke of their experiences.
Senator Mark McKenney called an organ donation “the most valuable of gifts.”
His father died in 1988 in Pittsburgh while waiting for a waiting for a suitable heart transplant. He questions if organ donations had been better understood and acceptable at the time whether a match would have been found.
Rep. Camille Vella-Wilkinson also spoke of her family and her 33-year old cousin Vinny who received a kidney donation this year, making her family especially grateful this Thanksgiving.
Rep. Joseph Solomon, spoke of his uncle who was the recipient of a heart transplant and the importance of registering as a donor. He thanked those who have registered for being prepared to give of themselves to ensure the lives of others.
Based in Waltham, MA, the New England Donor Services represents the federally-designated, non-profit Organ Procurement Organizations (OPO) responsible for the surgical recovery of organs and tissues for transplant throughout the New England region.
While Boger points out that it is very unlikely those who register would become donors, their actions could save a life and many as many as eight lives. The message, he points out, is the importance of registering.
Both Terry and Rachel can attest to that.
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