When she got the call in July of 2011, Cindy Fiorito dropped everything and boarded a plane for Boston.
In the month since her husband, Tom, was admitted as a potential heart transplant patient at Brigham and Women’s Hospital cardiac unit, she and the rest of the Fioritos had grown accustomed to surprises and living on edge. This time was different, though. This time, Tom’s doctors sounded worried.
The team of doctors told Cindy that they desperately needed to operate on his failing heart, and there was no guarantee he would survive the operation.
But by the time Cindy reached Boston, Tom’s luck had already changed and he had a second chance at life. That was nearly five years ago.
Determining a diagnosis
In spring 2002, Tom Fiorito of Hoschton suffered a massive heart attack. Luckily with the help of local doctors, he managed to survived the attack and seemed to recover.
But over the next nine years, his heart grew steadily weaker. He began to feel himself slowing down and tiring more quickly.
“I felt good for the first few years after my attack. But after four or five years, I started to lose some stamina and to feel tired,” Tom said.
“By the summer of 2010, I felt really bad. I couldn’t hardly walk from my car to the front door of my work without stopping to take a breather.”
By spring 2011, Tom’s condition had reached a breaking point. It was determined his heart was so weak its inability to circulate blood was causing serious problems to his other organs. It was then his doctors decided he needed serious help.
He was transferred to the transplant center at Emory Healthcare in Atlanta. He spent all of May being examined by teams of doctors and interns around the clock.
Initially, the Fioritos hoped a device could be installed in Tom’s chest to help control his heart. But it quickly became apparent any such device would only be a temporary fix. If the 57-year-old wanted a long-term shot at a normal life, he was going to need a heart transplant.
But for the moment, the family had to be patient.
While waiting in Tom’s hospital room for word, Cindy and their youngest daughter, Tracy, became his single source of comfort.
“It was a very challenging part of our lives,” Cindy said.
Tracy described the ordeal as “a roller coaster.”
In addition to the stress of the hospital stay, Cindy had just accepted a new job. And Tracy, 18, had graduated from Jefferson High School. Yet instead of heading to college with most of her friends, she took a job working with her mom.
Every night after work, the two women drove an hour to Atlanta to see Tom for a few hours. Then they returned to Hoschton to start the process all over again.
“Now that so much time has elapsed, I look back and wonder how we survived that,” Cindy said. “I think you live off of pure emotion and just hope for the best.”
In the hospital, Tom was visited every morning by one of his three doctors plus eight to nine interns. Together, the group examined him and performed tests.
“You kinda feel like an experiment,” Tom said, recounting his time at Emory. “They ask you how you feel, and tell you who they are talking to about your case. Meanwhile, they are running all these tests. ... But they never really gave me the results of the tests until the day I was discharged.”
At discharge in late May 2011, doctors told Tom that he had a rare disease called amyloidosis, which was immobilizing his organs and spreading through his entire body.
According to the Amyloidosis Foundation, the disease affects a special type of protein in the body and causes the proteins to malfunction and accumulate in organs. This can eventually cause organs to fail.
Though amyloidosis is classified as rare, the Amyloidosis Foundation reports more than 4,500 new cases of the disease are diagnosed every year in the United States. There is currently no cure.
Seeking a second opinion
Two weeks after being discharged from Emory, doctors told Tom and Cindy nothing could be done; he had six months to live. Doctors advised the Fioritos to go home and make arrangements for Tom’s death. It was time for him to start saying his goodbyes.
Tom did as the doctors told him — he went home and began preparing for his death.
But Cindy wasn’t at all ready to give up.
“I was stunned, I was mad and I was upset,” she said, recalling the days after Tom returned from Emory as some of the worst they experienced.
At first, Cindy was determined to provide the best end-of-life care as possible. But as she researched hospice options at work one morning, she found a website about Dr. Rodney Falk, a Boston specialist in cardiac illnesses such as amyloidosis. Cindy decided if anyone could help her husband, it would be Falk, so she took a shot.
“I just sent him an email off the Brigham and Women’s website,” she said. “I did not expect him to respond. But within 15 minutes, he answered back.”
The reply from Falk was curious and cautious. The expert said he was willing to look at Tom’s case, but he couldn’t make any promises. But in a matter of days, the couple flew to Boston.
Today, Tom marvels at Cindy’s determination to seek him a second opinion. He said without that, he would have accepted his fate.
According to the Patient Advocate Foundation, although asking for a second opinion can sometimes feel awkward, in many cases it can be important difficult or unusual cases. They report that over one-third of adults in the United States never look for a second opinion from their physician, and that a second opinion can only help.
Finding hope and miracles
At Brigham and Women’s Hospital, things moved quickly. A team reviewed Tom’s medical charts and ran new tests. Falk had good news and bad news. The bad was Tom indeed had amyloidosis, and his heart was still losing functionality quickly.
The good news was it was a different type of amyloidosis. Emory had originally diagnosed Tom with light-chain amyloidosis, the most common kind. But he actually had senile systemic amyloidosis now called “Wild-type ATTR.” His was the youngest case of “Wild-type” Falk had ever seen. Doctors determined that his Amyloidosis had not spread through his body, and was confined to his heart. The new diagnosis meant there was still hope.
By mid-July 2011, Falk’s team was ready to install a new device, called a BiVAD, into Tom’s chest to support his heart.
Miraculously, less than a day before the surgery, a donor heart became available for Tom. Without his knowledge, Tom had been placed on the transplant waiting list less than 72 hours previously, and already his wait was over.
After Cindy arrived from her Georgia home, the couple agreed to the transplant.
“I kissed him goodbye, and didn’t know if I’d see him again,” Cindy said, watched as he was wheeled into surgery.
For more than six hours, she sat in the waiting room, trying and failing to distract herself and pass the time. Cindy said her mind went back and forth from the best- and worst-case scenarios. Then another feeling rose.
“I felt very peaceful, because at that point I realized that everybody (who) was involved with getting us to that point ... did everything we possibly could,” Cindy said. “So what was going to happen, was going to happen, and there wasn’t anything I could do about it.”
After nearly seven hours and a few complications, Tom was rolled out of surgery and into long-term recovery room.
Tom spent the next few months recovering in Boston under the careful eye of daughter Tracy; frequent checkups made it difficult for him to head home. But soon enough, his doctors OK’d him to return to Georgia.
Nearly five years later, Tom distinctly remembers waking up after his transplant. His first memory after surgery is of Cindy standing over him.
“I heard her say, ‘Your color looks great!’” he said.
Tom said he realized at this point he was going to live.
Next Sunday, Tom and his family will celebrate the fifth anniversary of his transplant. In the previous years, the Fiorito family has lived a lifetime.
Before he received his transplant, doctors asked Tom a simple question: Why do you deserve a transplant?
His answer was just as simple.
“I’m a young man, I have a lot to offer and a lot to do,” he said. “I have young children that need me.”
Since his transplant, Tom has lived to see his children married and several grandchildren born.
Today, he and Cindy volunteer their time to mentoring future transplant patients and trying to help others with the power of what they faced.
Together, they know that they survived a crippling blow to their family, and are stronger today than they could have ever imagined in 2011.