February 3, 2013

Annual event raises heart health awareness

Have your heartset on monitoringhealth, speaker says


---- — PLATTSBURGH — Anne Buckley was just like every other person her age.

She was in her 20s and just wanted to have a good time, the Lake George native told a room of about 300 guests Friday evening at the fifth-annual Go Red for Women dinner in the West Side Ballroom in Plattsburgh.

Just as she was transitioning into adulthood, she learned she had the worst of three types of idiopathic cardiomyopathy.

But she had known something was wrong for a long time.

Her mother died of heart disease at 41 when Buckley was just 8 years old.

“When my mom died, I just knew. I saw the writing on the wall.”

What she didn’t know was the severity of her condition.

In early 2010, Buckley, now 40, spent 57 days in the Intensive Care Unit before doctors at Brigham and Women’s Hospital in Boston were able to tell her what was wrong.

It was congestive heart failure and the condition was terminal.

“You’re not going to survive,” they told her in March 2010.

Then, in late August, a group of doctors denied Buckley a spot on the transplant list because she had cirrhosis of the liver.

“My liver was failing after processing all the medication I had been taking for 10 years,” she said.

Two days later, Buckley had an appointment with a well-respected liver specialist in Boston.

During the appointment, she noticed he was disabled — something was wrong with his legs, she said.

The doctor had moved to the United States from a foreign country, attended Yale and was a professor at Harvard, clearly overcoming many obstacles, Buckley said.

“How many times in your journey have you been told ‘no?’” Buckley asked him. “The next day, he persuaded seven doctors to change their minds.”

Buckley was listed for transplant Aug. 27, 2010.

She was told she could wait for nine months to a year for a new heart.

Doctors must be sure that everything from chest cavity size to the person’s weight will be suitable for the donated heart, she said.

“There are so few hearts available that when one does become available, they’ll bring two or three people to the operating room. They’ll sedate everyone and only one person will wake up with a new heart and the other people will go back to their room and continue the wait. And that is a wait that you may not survive.”

It’s called a false start and it had happened to one patient seven times, Buckley was told.

Just days after Buckley was put on the transplant list, Dr. Gilbert Horton Mudge III called Buckley and told her they had a heart and she was the only known match.

Buckley got a new heart Sept. 1, 2010.

She felt different the moment she woke up after surgery.

“As soon as I woke up from the transplant, my heart felt full. It felt so full. I felt like I could breathe for the first time in my entire life.”

Apart from the organ donor and the doctors who saved her life, it was Buckley’s friends who helped her heal.

“My story is really mostly about friendship,” Buckley said.

Amazingly, 103 of her friends came together and at least one of them was by Buckley’s side at all times for a full seven months, she said.

While Buckley’s life was saved, it isn’t easy.

“People think, ‘Oh, she got a heart transplant, she’s all better.’ It’s not like that.”

Buckley travels from her home in Burlington to Boston each month where her heart tissue is tested to ensure her body isn’t rejecting her new heart, she explained.

She described the process as yanking pieces of her heart through her neck without sedation.

“It’s the kind of torture that no one should have to endure — ever. It is now a part of my life.”

And it’s not only the pain of the process that causes Buckley worry. 

“My whole life is ruled by having heath insurance, keeping health insurance,” she said. “If I lose any of that I can’t go to the hospital anymore.”

Buckley wants people to take away something from her story and remember it always.

“I would recommend that people would take care of the heart they have.”

The American Heart Associated started the Go Red for Women movement in 2004.

Those who work to make the event possible have a personal mission to spread awareness of the No. 1 killer of women.

Each year, the event meets its goal of raising $45,000 for cardiovascular disease research, said Keri Mack, regional director of the American Heart Association.

The cause has been a personal one to Mack for most of her life. Mack’s mother died of a stroke when she was 18 months old and her father and all four of her grandparents died of cardiovascular disease.

“My entire immediate family/support system was gone by the time I was 40,” Mack said. “It’s really important to me that people listen and take care of their families.”

Over a year of preparations for the dinner, heart disease has gotten closer to Lee Ann Pray, chairwoman of the Go Red for Women dinner and Heart Healthy Seminar.

“Interestingly enough, when I started this campaign I had no personal connection (to heart disease) and over the course of the year, my personal risk factor has gone from almost non-existent to very prevalent,” Pray said.

This year, Pray made a New Year’s resolution to “do better tomorrow that I did today.”

She encouraged the audience to take care of their family and friends.

“Why don’t we question their judgement and ignore their stubbornness?” Pray asked the audience, referring to people’s ironic readiness to prevent their friends and family from driving drunk but reluctance to discuss the risk factors and warning signs of heart disease with loved ones.

Many at the event have pledged to make the fight against cardiovascular disease a lifelong mission.

“We’re in this fight for as long as it takes,” Mack said.

Email Felicia Krieg: