Claude Brady - TRIO Pioneer
When Claude Brady was a young bachelor, he knew he wanted to marry a lady who already had children. It was an unusual wish, but he was an unusual man. He had a genetic condition that had caused him much suffering, and he was the kind of person who thought ahead—he didn’t want to pass his disease on to his biological descendants.
“There was no way I was going to put a child through what I went through,” Claude says.
He had been a sickly child. Something was wrong with his heart—the doctors could tell from the heart murmur they heard when they examined him, and he could tell because he just didn’t feel well. He was often short of breath, his heart pounded hard, he was tired all the time. And the illness seemed to run in the family: his brother and sister both had heart murmurs too, and several family members had died suddenly in childhood or early adulthood from what the family termed the “Brady heart.”
But the doctors who first pinpointed cardiac problems were at a loss as to what condition he actually had. It wasn’t until 1959, when Claude was 22 years old and referred to the Clinical Center of the National Institutes of Health (NIH), that hw became the first patient in the world to be diagnosed with idiopathic hypertrophic subaortic stenosis. The disease is now known as hypertrophic cardiomyopathy.
“They named it, and it didn’t mean anything to me, the name. As time went by, it could roll off my tongue no problem,” Claude says. “But these guys, they were excited about this…I didn’t know then how excited. They were about to discover a new disease, this was big stuff for them. For me, it was—leave me alone!”
Claude was always optimistic about his prognosis, no matter how poorly he felt. “I told many, many people in 1959: ‘My heart’s not going to kill me.’ I really believed they would come up with something that would help me.”
In the process of confirming his groundbreaking diagnosis, Claude’s doctors catheterized his heart twice. The second time, he went into ventricular fibrillation and the surgeon had to open him up and massage his heart for 17 minutes. He is convinced that the squeezing his heart got then made it work better afterwards. A little while after diagnosis, he was put on the beta blocker Inderal; the medication helped him enough that he could do his job as a salesman.
Meanwhile, Claude got his wish to have a wife who came with her own children, when he met and married Nancy, who had a daughter and a son from a previous marriage. Nancy was exactly the supportive, level-headed woman he had been seeking. They built a happy family life, she working at the Pentagon and he eventually becoming a division manager at Sears. Since they lived close to NIH, he could go into the hospital for short stays or experiment with different medications without disrupting their routines too much. For years, his health held up enough that he could keep up with his sales colleagues on the job.
In the 1970’s, he started developing symptoms again that slowly worsened with time. He kept working through the decade, until 1983 when he became so symptomatic he had to quit his job at Sears. At home, he worked on his truck, putting a new engine in—and that took him a slow two months as he worked in fits and starts.
Finally, in 1989, it was clear he needed a new heart. When his brother George had gotten his transplant a few years prior, Claude had been very nervous—but he was not nervous now, not for himself. He had seen George’s transplant go well, and he just felt his own would work too.
“My brother told me, ‘If you wake up from surgery and you can breathe down to your belly button, you know you had a transplant,’” he says. “The first thing I did when I woke was take a deep breath.” And Claude says “I felt that breath all the way down to my belly button.”
The operation had not been easy—the doctors had a difficult time removing his old heart during the Saturday surgery; when he woke on Sunday he was bleeding, and was wheeled back into the operating room. The next time he woke up, it was Thursday.
Yet overall, Claude did well after surgery, with no pain. He has lived with his new heart for 23 years, and is still going strong.
When his brother George had undergone his transplant, Claude accompanied George to monthly transplant support group meetings at Johns Hopkins. He learned a great deal from those meetings, and thinks the biggest reason Nancy and he were not concerned about his transplant when the time came was that they’d seen these Johns Hopkins transplant recipients up and about, living good lives.
After his own transplant, he and his wife, Nancy, attended a TRIO conference in Pittsburgh and decided to start a TRIO chapter in the Washington DC area. With this decision, they became known as the ‘Founding Father’ and ‘Founding Mother’ of the Nation’s Capital Area Chapter of TRIO in 1991. The chapter was robust and large, with about 250 members at its most active.
When Nancy died 13 years ago, the NCAC Chapter activities began to slow. Nancy had been the great organizer, setting up events and getting things done; without her, the chapter had no ‘shepherd.’ Now that some time has passed, Claude would like to get things going again. In December, the chapter met and elected officers, with Trudi Anderson and Mike Garrett serving as Co-presidents, Jim Weaver as Vice President and Claude as Treasurer.
In the meantime, he also runs Transplant Awareness Inc. (www.transplantawareness.org), a nonprofit group that sells T-shirts, pins and other products promoting organ and tissue donation.
Claude advises those facing a transplant to go into it with the mindset it is going to work, and make sure to take medications faithfully afterward. “Half of being a successful recipient is mental—whatever I gotta do, I’m going to do. And then I’m not gonna spend all my time worrying about it. Life is good after a transplant.”
Fifty years after his diagnosis, some of his doctors wrote up his case in the American Journal of Cardiology. Even this academic article rings of hope for others with such conditions: “Claude Brady has taught us a great deal, not only about [the disease] but also the important principle that patients with this sometimes profound hereditary condition can by virtue of their attitudes, perceptions, and fortitude, ultimately prevail against substantial odds.”
“One of the things I’ve been saying is when I reach 75, I’ll plan for old age,” laughs Claude. On April 13th this year, he will turn 75, but old age will have to wait. “I’m still not ready,” he says. “Seems like 75 just arrived too quick for me.”
Growing up, Claude was acutely aware of the possibility that his heart might not be beating the next day. Today, despite some problems such as muscle weakness, his health is “a whole lot better than anyone can ask for. I’ve done well mentally, that’s never been a challenge.”
When someone says to me today, ‘Boy, you’re lucky.’ Well, there is one step past luck, and that’s blessed. And I feel I have been blessed.”