It had been about two or three years since Sayville resident Ed O’Donnell’s last physical in the summer of 2018. And with a history of heart disease running in the family, Trish, Ed’s wife of 33 years, gently nudged, “Ya think it’s about time you made an appointment, Ed?”
Acknowledging that Trish was, “almost always right,” Ed, although slightly overweight and on blood pressure medication, but otherwise strong, active and symptom-free, (dutifully) made the appointment with a family physician. Testing, including blood work, an EKG, stress test and echocardiogram, produced, as the doctor advised Ed, “No red flags.” But that was all about to change.
As summer turned into fall, Ed, then 58, found himself becoming increasingly fatigued. “Soon, I couldn’t walk more than 15 feet without stopping,” says the retired marketing executive, TV producer and dad to a grown son, Ryan, and daughter, Allie. There was the possibility of having contracted Lyme disease and a regimen of antibiotics was started. But the extreme tiredness continued.
Then, on October 25th (2018), Ed, by chance, hooked himself up to a blood pressure device that had belonged to his dad. To his shock, despite still being on his blood pressure med, Ed’s pressure had soared to an astounding 190/120.
Congestive Heart Failure
Incredibly, although shortly after their arrival at Stony Brook, Ed was chatting amiably with the doctors and staff, his ejection fraction — a measure of how effectively the heart is pumping blood — was at just six percent (a normal reading is 50 to 75 percent. He was diagnosed with congestive heart failure, a serious condition in which the heart is unable to efficiently pump blood to the rest of the body, and admitted to the Cardiac Care Unit. Ed’s heart was essentially becoming non-functional. “Trish and I were stunned…in disbelief,” says Ed. “If I hadn’t put on that blood pressure cuff, I wouldn’t have even come to the hospital. Incredulous, Trish asked, ‘How could someone seem so okay, but be so bad off?’” It was determined, as well, that Ed’s main artery was 80 percent blocked. Two attempts at a coronary artery bypass, had to be scrapped, as Ed’s heart was simply too weak to proceed.
‘Code Blue’ — and Sitting, Watching and Praying…
On October 31st, Trish, the kids and a family friend had just left Ed’s bedside and were on their way out to the parking lot when a call came from Dr. McLarty asking Trish to return as quickly as possible. Ed had ‘coded’ — also termed, ‘Code Blue’ or Emergency Status — and he was now in a life-or-death cardiac crisis. Dr. McLarty explained that Ed’s organs were failing and if not immediately placed on an extracorporeal membrane oxygenation (ECMO) machine, which provides cardiac and respiratory support to someone whose heart and lungs are shutting down, Ed might not make it through the night. “My husband fell into a coma and would remain that way for the next five weeks,” says Trish. “Every day our family would stop by and listen to the ECMO going chug… chug… chug… and sit and watch and pray…”
The Device and The Team
The determination was made that Ed was a good candidate for a left ventricular device (LVAD). The way Hal Skopicki, MD, PhD, Chief of Cardiology, explained it to the O’Donnells, was, “While people with a heart condition may get close to the edge, most have a bit of a protective cushion. Ed’s heart was now beating at about only three percent of its capacity. He unfortunately had no cushion and was about to fall.” “An LVAD was the only hope for prolonging Ed’s life at this point,” says Trish. “I told the doctors, ‘Go for it.’” Dr. McLarty, the surgeon who would be implanting Ed with the LVAD, called a family meeting to introduce the O’Donnells to the plastic and metal device. She explained that the LVAD is a surgically implanted, battery-powered pump that, by supporting the lower left ventricle (the heart’s main pumping chamber), helps a failing heart to do its job. The LVAD can be used as an intermediary step before heart transplantation — a “bridge” to transplantation — or, in patients who, due to their advanced age or medical condition are not transplant candidates, as a long-term, “destination” device. “And, with that, Dr. McLarty plunked down on the table in front of us this contraption that looked like my pool pump,” says Trish. “That’s what’s going inside my husband’s chest wall?! I couldn’t help blurting out. In truth, no concern or question we had went unaddressed or unanswered. How this phenomenal doctor managed to keep all of us calm, hopeful and not freaking out, is nothing short of a miracle. “On a scale of one to ten, though, everyone at Stony Brook was a fifteen. Over the next several weeks, these dear, amazing people were to become nothing less than a second family.”
"Where’s My Turkey Sandwich?"
On November 3rd, Dr. McLarty successfully implanted Ed with the HeartMate 3 LVAD system. In anticipation of his awakening, Trish surrounded Ed with familiar photos, and, as patients in a coma can often process and respond to sound, would often play his favorite DVDs CDs. As it turns out, on more than one occasion, she would hear a semiconscious Ed mouthing the words to Joni Mitchell’s, Both Sides Now, or the Carpenters’, We’ve Only Just Begun… And, then, on December 4th, Ed woke up. He asked Trish where they were going for Thanksgiving, and in true Ed O’Donnell fashion, wanted to know what was holding up delivery of his turkey sandwich. “Our Ed was back,” smiles Trish. The team instructed Trish and Ed on every aspect of post-surgical care, operation of the device and living with the LVAD system. On December 31st, Ed left Stony Brook for two months in a physical rehabilitation facility. And, then, on March 3rd, 2019, Ed’s heart journey finally took him home again.
Precious Moments
Today, four years later, Ed is busy living the life he loves: spending time with family, walking, gardening, cooking, power-washing the house — so far, two porches and a deck — and being politically involved. His blood pressure comes in at a solid 100/60 +/- 10 and the ejection fraction at a nice and normal 60. “It took us a chunk of time to get used to the LVAD,” admits Ed. “It’s a total lifestyle change and, in truth, can be a pain in the a**. But after the initial strangeness and newness wear off, it is amazing how normal your new normal can be.” Ed is also about 55 pounds lighter than he was three years ago. Dropping another 15 pounds or so will allow him to qualify as a candidate for a heart transplant. “My family has been by my side through this whole thing,” shares Ed. “I don’t want to tear up here, but I’m one of the luckiest guys in the world to be able to say that my wife and my kids are also my best friends. And, at Stony Brook, I felt blessed to have had the best medical care any person could have. If I hadn’t had the LVAD put in when I did, by the team that I did, there’s a good chance I wouldn’t be here today. For anyone out there facing down heart failure, trust me, if I could make it back, so can you. Thank you Stony Brook, for giving my life back to me.”
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