Survivor Story: Tom Bull

There is a whole new world on the other side of transplant.


Tom Bull has had a remarkable life, and he’s only 50 years old. He’s traveled the world as a stagehand with famous rock bands, launched two successful breweries, and saved lives as an EMT.

The most amazing thing about Tom? He’s still here.


Having survived a harrowing heart condition and a life-saving heart transplant in 2018, Tom is now a


Team HeartBrothers Ambassador and helped launch the organization’s HeartBrothers House in Boston.


“I really wanted to give back to the HeartBrothers for all the support they showed me,” says Tom.


When Tom was just nine years old, his younger brother was diagnosed with a heart condition and had a pie-shaped piece of muscle cut out of his ventricle.


“They started watching me pretty closely then,” Tom remembers. “I was a real active kid. I played goalie in soccer, center in basketball. Then, when I was 15 or 16, they yanked the rug out from under me. No more adrenaline sports.” Luckily, at the time, Tom showed no serious symptoms of a bad heart.

He had his first cardiac episode in college in West Virginia. “I just passed out while studying,” he recalls. Doctors sent him to Pittsburgh, the closest heart center at the time, where they shocked his heart back into rhythm and implanted a defibrillator.

“I was one of the first people under the age of 65 to have one put in. It was as big as an old Sony Walkman. It lived in my abdomen.” Doctors also inserted a device to help pace his heart.


“By 19 years old I had coded six times. I was like, ‘What else can you do to me?’”

For the next 25 years, Tom was mostly asymptomatic and worked as a roadie with rock bands from AC/DC to ZZ Top. He also worked with the Bolshoi Ballet and Alvin Ailey Dance Company.

“I was in lighting. I would climb set rigging to work with the shows’ lights and sound systems. I would hang all the structural points, climbing the steel. The tallest I ever climbed was 110 feet in the air.”


He remembers feeling invincible.


Tom also opened two breweries in Maine (Bull Jagger in Portland and Dirigo Brewing Co. in Biddeford) and married the love of his life, Molly.


Then, when he turned 45, his defibrillator went off.


“Turns out I was on a recall list. Some of the lead wires were faulty and so they had to go in and remove all the old hard wires in the vessels that lead to the heart and put in new wires. After that, I went downhill, like straight downhill.


“My life changed completely,” he continues. “All of a sudden, I couldn’t carry a basket of laundry without having to stop two or three times. I had been a really active guy, but I couldn’t do anything anymore. I could barely breathe.”


Tom remembers going into Tufts Medical Center for an appointment, and doctors wouldn’t let him leave.


“I was there for eight and a half months waiting for a new heart. At one point, I had 23 separate IVs running into me, just trying to keep me alive.”


Tom received his new heart on November 26, 2018. But he wasn’t out of the woods yet.


“I came out of surgery septic and spent 12 days in the ICU in an induced coma. I had lost so much body mass I couldn’t hold my own weight. I had to learn how to walk again. It was a real struggle, a really long process. The heart was great, but the rest of my body had deteriorated.”



Tom met HeartBrother Mike Ashworth in the hospital. Ashworth, a fellow heart transplant survivor, was visiting patients, sharing his own stories of struggle and hope.


“It was such a great thing,” Bull remembers. “Then I met [HeartBrothers] Hamid Mahdavy and Larry Williams. I met Pat Sullivan later. All of them would continually check in on me. They were such great support for me and [my wife] Molly.”


After his transplant, Tom moved with Molly to Old Orchard Beach, where they still reside.

Tom offers this advice for heart failure patients:

“It’s so much better on the other side of transplant. There is a whole new world on the other side. Now, I walk the beach. I get on the sand and I start walking and I’m like a machine. I just don’t stop.

“I like the Bob Marley quote, ‘You never know how strong you are until being strong is the only choice you have.’”

 

TOM IN THE NEWS:


Maine brewer's passion for fellow heart transplant patients beats stronger every day

Tom Bull, who received a new heart in 2018, volunteers with the HeartBrothers Foundation to support other patients going through the same experience.


Watch the full news video HERE. || Read the full news article HERE.


PORTLAND, Maine — Bull received a new heart nearly four years ago after his own couldn't pump enough blood and oxygen to support the rest of the organs in his body.


That gift of life inspired the longtime brewer to become bullish on supporting other heart transplant recipients on their journeys to recovery.


Bull is considered a pioneer in Maine's brewing industry. He founded two of the state's first lager breweries -- a career that got sidelined by heart failure, a condition the U.S. Centers for Disease Control and Prevention said impacts more than 6 million people across the U.S.


"I was walking through the brewery, and my defibrillator fired. It had never fired since I was 19 years old," Bull, who has a congenital heart defect, explained.


Bull's health continued to go downhill. Just taking something up the stairs became difficult.


"I was out of breath, my color was bad, and my circulation wasn't working," Bull added.


Following a visit to his cardiologist at Tufts Medical Center in Boston, he was put on a waiting list for a new heart. During the next nine months, Bull was visited by members of the HeartBrothers Foundation. As part of the nonprofit, heart transplant recipients visit and support other patients. Bull said talking with members of HeartBrothers lifted him from a dark place.


"To meet people that were four to five years out was so encouraging. So inspiring to know that there is a light at the end of the tunnel," Bull said enthusiastically.


Nearly four years ago, that hope and encouragement helped get Bull through his own transplant operation, followed by 12 days in the intensive care unit.


While still in recovery, he wanted to give back to other heart failure patients. A little more than a year after his surgery, he started managing the HeartBrothers House in downtown Boston. Patients can rent rooms with parking for less than $50 per night, lessening the burden for many families, including Mainers.


"The majority of the people who stay there come from rural Maine, especially," Bull explained.


Bull had to give up plying his trade. Brewing involves exposure to yeast, mold, and grain dust, which all pose health risks and could compromise a host of immunosuppressive drugs he must take for the rest of his life.

But his old recipes live on in the hands of brewers like Joel Mahaffey, partner and head brewer at Foundation Brewing Company.


 

TOM & FOUNDATION BREWING'S "THE BULL":


Foundation Brewing of Portland, Maine, has released a rebrew of its Baltic Porter "The Bull" for autumn 2022 with an official release scheduled for mid-October.


Part of the proceeds of all beer sales will be donated to the HeartBrothers.


Check back here for more details as they become available.