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Refuse to lose


Mac pre-heart transplantMac, 57 years old, is an active man who enjoys the beautiful outdoors surrounding the log cabin he built in Vermont. These days you might find him outside zooming around on one of his three snowmobiles or in his garage restoring cars, his two favorite pastimes.

Listening to what his days are like now and hearing the energy in his voice, it’s hard to believe that a little more than six months ago Mac had a heart transplant. But he calls the journey leading up to getting his new heart “a long road.”

Starting down in the Bahamas

The first time Mac had any idea that something was wrong, he was just 33 years old and about 100 feet down in the water off the coast of the Bahamas. An avid scuba diver, Mac was on a dream diving trip.

“I had some problems—including severe shortness of breath,” he recalled. 

Mac carefully came back up to the surface of the water, got back on the boat and took it easy for the rest of his vacation. 

Soon after he returned home, he saw his primary care doctor who referred him to a cardiologist in the Springfield, MA, area. Mac was diagnosed with cardiomyopathy, a disease of the heart muscle that makes it difficult for the heart to pump blood through the body. 

Eventually, Mac’s symptoms got worse. He had increasing chest discomfort, fatigue and swelling in his legs, among other complications. His cardiologist suggested bypass surgery—Mac’s first of several procedures to try to increase the blood flow to his heart. 

The surgery went well. Mac took his time to recover and return to his job as a mechanic for the state. He liked to work and keep busy, and he felt “really good” for a while. 

“Then, I started feeling really sick like before, so we tried open heart surgery,” said Mac. “After that surgery, I had about 10 good years, then things went downhill again.” An echocardiogram showed the cardiomyopathy had progressed to a very serious point. 

“My doctors said it was time for me to see the heart specialists at Tufts Medical Center in Boston,” Mac said. “They did everything they could for me and knew the program at Tufts MC would be able to help.”

Unexpected news

It was about five years ago when Mac first met with David DeNofrio, MD, Medical Director, Advanced Heart Failure Program at Tufts MC. Dr. DeNofrio conducted a complete evaluation on Mac. He studied the reports and shared with Mac what he discovered: he would need a new heart. The Tufts MC team had to first get him healthy enough to be able to accept the new organ and then find a match for him. 

Mac developed a new nutrition plan that consisted of eating only heart healthy foods such as fresh vegetables and fruits, no processed foods and very low salt, and started exercising regularly. He eventually got down to a healthy weight. 

He learned that his family history of heart disease most likely played a role in his condition. Certain types of cardiomyopathy can be hereditary. His father and grandfather all died at a young age from heart attacks. 

Mac’s name was added to the list of people waiting to receive a new heart—the heart transplant list.

“I never thought this would happen to me,” Mac shared. “I was really scared.”

But he was confident he was in good hands. Since the year 2000, Tufts MC has performed more than 480 heart transplants – the most of any transplant center in New England. And the heart transplant program is the only program in New England to receive the highest rating – Tier 5 – for 1-year post-transplant survival.

“Mac’s heart was badly damaged and we knew that he would eventually need a new heart,” said Dr. DeNofrio. “One of the challenges we faced while waiting was that he became too unstable for a ventricular assist device (VAD), a mechanical pump implanted into the chest to help the heart pump while he waited for a new heart. Instead he required support with peripheral ECMO (extracorporeal membrane oxygenation) in the hospital to stabilize his situation as a bridge to VAD and eventually transplantation.”

A supportive community

Mac credits his team at Tufts MC with “a refuse to lose attitude.” Over time, he had four surgeries, multiple procedures and tried numerous treatment options.

“My Tufts MC doctors kept me alive while I was too sick to even get a new heart,” Mac said. “They tried so many different things until I was strong enough to handle a new heart--and there was one available for me.”

While at Tufts MC, Mac met a support group of patients who already had their heart transplants. They helped give him hope. 

“These guys were incredible, a few of them came to my room at different times and asked if they could talk with me,” Mac said. “They shared their stories with me, really helped me and gave me hope.” 

Mac was in the Intensive Care Unit (ICU) at Tufts MC being cared for by his team of specialists when he got the news: there might be a match for him. He could have a new heart soon. 

A new heart

Mac smiling post heart transplantThe Tufts MC transplant team determined that the heart was a match for Mac, and he was indeed strong enough to have the heart transplant surgery. After about a 13-hour surgery performed by Gregory S. Couper, MD, Surgical Director, Advanced Heart Failure Program, and his Tufts MC team, Mac began the next chapter of his life with a new heart. But not without challenges at the beginning. 

During the next few months, Mac had some set-backs and complications. He went back and forth from a rehabilitation facility to Tufts MC. The rehabilitation facility followed the directions of Mac’s team at Tufts MC, and they worked together on his treatment plan. Finally, Mac was able to go home with close monitoring by the Tufts MC transplant team. 

Under the team’s care, he has follow-up visits at Tufts MC monthly for the first year that include tests such as blood work, echocardiograms, electrocardiograms, and heart biopsies. After the first year, he visits every three months, and then every six months after five years. 

Mac says he did “pretty good through it all.”

He described his team at Tufts MC, “the best in the world, phenomenal.”

“It’s the doctors, nurses, technicians, everyone!” Mac said

Heart Health Night at the Bruins

Mac’s positive attitude and enthusiasm for life is contagious. He’s adapted to being retired and enjoys his time with loads of support from his whole family, including two sisters and brother-in-laws, large network of long-time friends and his “unbelievable team at Tufts MC.”

He’s excited to join another inspiring Tufts MC heart patient, Pat, on the ice as part of Tufts MC Heart Health Night at the Boston Bruins on February 4. Our home team takes on the Vancouver Canucks at the TD Garden, and Mac, Pat, and two Tufts MC CardioVascular Center Physicians, Christopher Madias, MD, Director, Cardiac Arrhythmia Center, and Payam Salehi, MD, PhD, Co-Director, Aortic Disease Program, will participate in a friendly shoot-out during intermission.