Don Chaney: Determined to Pull Out a Win

Former NBA player and two-time Boston Celtics champion Don Chaney now uses his celebrity platform to raise awareness about ATTR-CM.

Don Chaney, a former NBA player and two-time Boston Celtics champion who scored more than 6,000 points in his career, knows a thing or two about pulling out a win when the odds are stacked against you.

“I had some great moments and experiences,” said Chaney, 75. “I was fortunate to play with a lot of great players in great organizations.”

Chaney’s grit and determination proved invaluable when he faced his greatest challenge yet, ATTR-CM, or transthyretin amyloid cardiomyopathy, a rare condition associated with heart failure in which the liver produces misshapen transthyretin proteins, or amyloid, that accumulate in the organs.

When amyloid builds up in the heart, it makes the heart stiff and more difficult to pump blood.

There are 2 sub-types of ATTR-CM: wild-type, which occurs as you age, and the hereditary form of ATTR-CM (hATTR-CM), which is caused by a gene mutation. Chaney learned he is living with the hereditary sub-type. There are many mutations that cause the hereditary form of ATTR-CM. The most common one is found in about 1 out of every 25 African Americans. Not all individuals with the mutation develop symptoms of hereditary ATTR-CM.

Chaney’s symptoms started about a decade ago when he developed carpal tunnel syndrome in both hands and swelling in his knees and joints. At first, he suspected the aches and pains were a result of his years on the court. After all, he’d suffered many injuries over his 22-year career, most notably a torn Achilles tendon.

A few years later, however, he began experiencing a host of other symptoms, including heart palpitations, shortness of breath and fatigue. Aware that his mother and grandmother died of heart disease, “An alarm went off,” he said. “I was very concerned that I was dealing with the same issues.”

A cardiologist later confirmed Chaney’s suspicions, diagnosing him with heart failure. It never occurred to him to tell the doctor about his joint problems, which he regrets to this day. “Had I mentioned to him about the carpal tunnel syndrome and the swelling in my ankles and lower legs, I probably would have been diagnosed a lot sooner,” he said. “The sooner you get diagnosed and start treatment, the better chance you have to manage the disease.”

It wasn’t until 2019 that Chaney and his cardiologist agreed to explore genetic testing and discovered he had the hereditary form of ATTR-CM.“I felt like my body let me down,” he said, “but I’ve always met things head on.”

Indeed, Chaney soon talked to his siblings and adult children about the condition, informing them about symptoms they should watch out for and urging them to get genetic testing and counseling. As a result, one of his family members found out she has the gene mutation and is now closely watching for any symptoms associated with the disease.

In addition to taking medication, Chaney also made lifestyle changes, forgoing red meat for lean protein sources like salmon, eating more vegetables and, inspired by the Louisiana cooking he grew up with, cutting down on salt in favor of a mix of spicy seasonings. “I feel a lot better,” he said, noting that his wife, Jackie, makes sure he stays on track and takes his medication. “She’s a great caregiver.”

Feeling duty-bound to educate others about ATTR-CM, Chaney began sharing his story with anybody who will listen. “When I found out it was a genetic mutation that affects African Americans at a disproportionate rate, I began to think of myself as a messenger,” he said. “I’m so glad I can help spread the word.”