Searsport family works with researchers on genetic links to heart condition

Herb Conner celebrates 10 year anniversary of heart transplant
By Jordan Bailey | Aug 07, 2014
Photo by: Jordan Bailey Herb Connor, right, takes a break from construction work in Searsport to pose with his son, Allen Connor, left.

Searsport — At age 27, Herbert Connor, a Searsport resident who worked at Tozier's Market for 20 years, was diagnosed with enlarged cardiomyopathy, a condition that reduced the effectiveness of his heart beats in pumping blood and left him short of breath during moderate activity. He was placed on the heart transplant list. Over the years while he was waiting for a heart to become available, his condition worsened. He was given a cardiopulmonary bypass machine to assist in his heart in pumping, and during the fourth year he was bedridden for 31 days at Massachusetts General Hospital with a balloon pump in his leg to assist with circulation.

Connor was also on a restricted diet at that time and could not consume more than one liter of liquid a day. The liquid restriction was difficult, his wife Cathy Connor said, "but Herb knew his life depended on it." She said they witnessed one of the other patients in the hospital at the time who also on the transplant list miss his chance for a new heart because he was "always at the water faucet."

One of those nights, July 11, 2004, a nurse informed Herb they had a heart waiting for him. He did not get excited because he had been on backup for a transplant three or four times before, and anything could still go wrong. But this time it happened. Herb went into surgery at 1:30 a.m. and Dr. Marc Semigran performed the transplant that night.

The procedure took a long time because of complications in the removal of his bypass machine, Cathy said, but finally at 8 p.m. that evening she was able to see him in the Intensive care unit. However, shortly thereafter his new heart began filling with blood clots. Then It was back into surgery again, and after four more hours, the clots were removed.

Herb couldn't walk for a couple of weeks, and his body rejected the heart three times in the first three months. With the use of anti-rejection drugs and steroids he was able to overcome those early setbacks, too.

According to the Center for Disease Control, "On any given day there are around 75,000 people on the active waiting list for organs, but only around 8,000 deceased organ donors each year, with each providing on average 3.5 organs."

Lack of available organs leads to eighteen deaths a day, according to the Network for Organ Sharing, a non profit that operates the Organ Procurement and Transplant Network. The network reports that more than 54,000 hearts have been transplanted in the U.S. between 1988 and 2012.

Herb stayed in Boston for eight months before and after the transplant procedure in housing provided for Mass General Hospital patients for a much lower rate than could be found at area hotels. With the cab fares and the cost of food, it still was expensive to stay there, but they were lucky to have excellent health insurance through Cathy's employer at the time, Bayview Manor in Searsport, which covered Herb's medical bills.

When he was able to come home, Searsport Police escorted the Connors' car into town. "My wife and the community have been really supportive," Herb said.

Now, ten years later, Herb says he is happy with the outcome. At his latest checkup, his doctor told Herb his test results were the best he's seen for him in 10 years. Because of the anti-rejection medications he will be taking for the rest of his life, and additional medications to counteract their side effects for the rest of his life, "I'll never be "100 percent," Herb said, but he is able to enjoy the activities that used to cause him shortness of breath before the transplant, such as going for walks with his wife, camping, and bowling.

"He loves life," Cathy added.

The condition came back to the forefront of the Connors' minds when the their son, Allen, now 21, was diagnosed with cardiomyopathy at age 20.

Several other members of Herb's family have also been diagnosed with cardiomyopathy. Herb's brother died at age 27 from the same condition, and his uncle was diagnosed at age 70 around the same time Herb was. He did not go on the transplant list and also passed away.

"I think it is genetic, but we haven't proven it yet," said Herb.

The family is working with cardiologist Dr. Collum MacRae at Brigham and Woman's Hospital in Boston to find if there is a genetic source for the disease. Herb and Allen each had the some of their genes tested, and found that one was an exact match. They will be getting full-body gene testing done in the near future.

Dr. MacRae and other doctors in Boston are monitoring Allen closely to try to find the exact treatment and the precise age to begin it to prevent the condition from progressing to the point where a transplant would be necessary. Right now Allen is on a small dosage of Lisinopril, a blood-pressure medication, which may be all he needs to keep the enlargement of his heart at bay. If future generations have this condition, the Connors say they hope they would be diagnosed and treated early so no more transplants would be necessary.

The Republican Journal caught up with Allen, a student and member of the men's golf team at University of Maine at Presque Isle, at his parent's home in Searsport while he was on his way to work out at Bay Area Fitness. About his condition and treatment he said: "I'm just taking one pill right now. It is what it is. I trust my doctors. They're really smart," he said. "They all graduated from Harvard."

The Connor family held a ten-year heart-transplant anniversary party Sunday, July 20, at the Searsport Lions Club. Approximately 90 attended for a night of music, food, dancing and socializing and recording an impromptu music video to Pharrell William's song "Happy."

Comments (0)
If you wish to comment, please login.