I first met Phil McKinney on the floor of CES in Las Vegas around 2008. Everyone was chasing the same shiny gadgets. McKinney was pointing at what nobody was talking about yet: ultrabook slates before the iPad existed, voice recognition for accessibility years before Siri. He was always 18 months ahead of the room. As VP and CTO of HP’s Personal Systems Group, he was my go-to for anything about where technology was actually headed.
Most of the technology world never knew that Phil McKinney has been managing a genetic heart condition since he was 17 years old. It runs in his family. His father nearly died from it at a time when the medical community barely understood it, and it can kill a young, healthy person mid-game with no warning whatsoever.
A close friend of mine, Justin, who ran Patient Pro Marketing in the vascular world, died from it not long ago. He had no idea he had it, and neither did anyone in his family. That story is far more common than Phil McKinney’s, which is exactly why McKinney’s is worth telling.
The condition is hypertrophic cardiomyopathy, or HCM, a genetic mutation that causes the heart’s left ventricle, the main pumping chamber, to thicken abnormally. About one in 500 people carry it, most without any idea. As that wall thickens, it can block blood from leaving the heart through the aorta, generate lethal electrical rhythms, and cause sudden cardiac arrest.
McKinney and his father carry the apical variant, where the thickening concentrates at the very tip of the heart rather than the upper wall. In the U.S. it accounts for roughly three to ten percent of HCM cases depending on the population studied. Both forms can carry a risk of dangerous arrhythmias and sudden cardiac death. The difference is where the thickening occurs and how it’s found. Standard HCM can sometimes show up on a regular echocardiogram. Apical HCM frequently doesn’t, and cardiac MRI is often the only way to see it, which is part of why it goes undiagnosed for so long.
Dr. John Phillips, my co-host on The Heart of Innovation and an interventional cardiologist, described how this plays out: when a soccer player drops on the pitch or a football player collapses mid-game, HCM is frequently the culprit. “It can affect a young, healthy person and cause sudden death,” he said. Most of the time, the person had no idea anything was wrong.
McKinney’s father found out in 1975 or 1976 through a routine physical required for an adult Boy Scout volunteer position. Their family physician in Chicago caught a faint murmur and sent him to the University of Chicago, where one of the few cardiologists working in this area at the time confirmed the diagnosis. Two years later, the elder McKinney went in for open-heart surgery to thin the thickened wall. He was only the seventh person in the world to have the procedure. Dozens of physicians crowded the OR, and the family signed releases so the surgery could be filmed and shared with cardiologists across the country.
Phil McKinney was 17 and in the waiting room that November. He had just started dating Michelle that September, the same month the University of Chicago brought in his father’s male relatives for early genetic testing and Phil received his own diagnosis. They had met three years earlier through the Boy Scouts Explorer program. When they started dating, she asked how close he was to his Eagle Scout. Five merit badges, he told her, three weeks, probably not enough time. She told him she didn’t date non-Eagles. He finished five merit badges in three weeks and earned his Eagle with 11 hours to spare before his 18th birthday.
His soccer career ended that same fall.
McKinney has lived with this condition for nearly 50 years, and what he describes most is that he feels nothing. Today his heart throws ventricular tachycardia and premature ventricular contractions in patterns that alarm hospital monitoring teams on sight, 20, 25, 30 consecutive beats of VTAC. Staff always ask him the same question: don’t you feel it?
“I don’t feel the arrhythmias,” he said. “I don’t think my heart rhythm has ever been normal. I don’t know what normal feels like for everybody else.”
That answer explains why this condition kills people who had no warning. When you have never had a normal baseline, nothing feels out of the ordinary. The disease progresses and the person has no idea, which is how a seemingly healthy athlete ends up face down on a court.
Stanford became central to McKinney’s care when he joined HP and moved to the Bay Area, where his uncle already lived in Vallejo and his brother eventually settled. Dr. Euan Ashley, who founded Stanford’s Center for Inherited Cardiovascular Disease and now chairs the Department of Medicine there, brought the living male members of the family together for testing.
That monitoring showed medications alone weren’t enough. McKinney became a test case for early non-invasive cardiac monitoring before eventually receiving an implantable cardioverter-defibrillator, an ICD that watches his heart rhythm continuously and delivers a shock if a lethal rhythm takes hold. He’s now on his third device, with battery swaps every seven to eight years. It has never fired.
His father’s device did, more than once, and McKinney witnessed some of those episodes. His father grew up in Kentucky and described the sensation as being kicked in the chest by a horse, a comparison he knew firsthand. When McKinney’s own device was implanted, the technician asked whether he wanted an audio tone to count down the seconds before a potential shock. His answer was no. “I don’t want the stress of the beep beep beep counting down. No thank you.”
Douglas Salisbury, who leads our PAD Warrior Task Force and also has apical HCM, knows what a firing device feels like. Three days after his myectomy, his device went off three times in ten minutes. “I have never experienced anything like that in my life,” he said.
McKinney also carried coronary artery blockages from his mother’s side. In February 2023, his wife Michelle, a neonatal intensive care nurse who spent 25 years in that specialty and earned her master’s in nursing from the University of Evansville, dragged him to Mayo Clinic for his annual workup, as she always does. His standard echos came back flagged, and the clinical team told him to stay.
He ended up in open-heart surgery. The plan was a quadruple bypass, but surgeons could only complete three once they were inside because scar tissue and buildup around the heart blocked access to some of the blockages entirely. While they had him open, they also performed a MAZE procedure, surgically rewiring the heart’s electrical pathways to address the atrial fibrillation he had been fighting for years. McKinney had been cardioverted roughly 35 times in his life, on a cycle of needing the outpatient procedure every six weeks because his heart would never convert back on its own. Since February 2023, he has had zero episodes of AFib.
All three of McKinney’s children have been tested. His oldest daughter carries the mutation but has not developed the disease. When she gave birth to McKinney’s first grandchild 13 years ago, Stanford sent two cardiologists to observe the delivery at the other hospital to monitor for any cardiac effects from labor.
The family had secured life insurance for all three kids before any genetic testing happened, knowing what a diagnosis could mean for coverage. McKinney himself has been uninsurable for individual life coverage since he was 17, relying entirely on employer group policies through his career at HP and CableLabs. A diagnosis follows you through every insurance application you’ll ever fill out.
McKinney’s message to anyone with family history of cardiac events, and especially to parents of young athletes, is to push for an echocardiogram and fight with the insurance company if necessary. A routine youth sports physical won’t catch a structural abnormality. A five-minute echo very often will. If there’s cardiac history in the family, ask about genetic testing, because identifying the mutation gives the next generation a chance at the same outcome McKinney and his brother have had.
“Be an advocate for yourself,” he said. “Find good care. With early diagnosis and good medical care, you can have a great, normal life.”
McKinney is 65. His brother is approaching 70. Their father made it to 68 before the condition took him. A family physician heard a murmur at a Boy Scout physical and sent a man to the right doctor. That one referral changed everything for three generations of McKinneys.
Justin never got that far. He never knew there was anything to find. Get checked.
If you have questions about this story, you can call the Global PAD Association’s Leg Saver Hotline at 1-833-PAD-LEGS.
