Amy Reames suspects the trouble began as early as November 2014. She was coughing then, and she’d noticed her heartbeat seemed off.
But that’s hindsight. Her first unmistakable sign of trouble didn’t really come until summer.
She was at her home near Howard City, Michigan, with her husband of seven years, Aaron Reames, and their 2-year-old daughter, Addison, and 15-year-old stepson, Isaac.
“There were three days in June where I had shortness of breath and I couldn’t lay flat,” said Amy, a smoker at the time. “I was more blaming it on the smoking. I just felt like I had a lot of pressure on my chest.”
The symptoms dissipated a bit, but returned with a vengeance in July.
“I felt bloated in my abdomen,” she said. “Then I started coughing, and then the shortness of breath started again. I kind of knew something was wrong, just because it was recurring.”
When her legs started to swell, so did her worries.
Her husband—a physician assistant at a Spectrum Health affiliate—urged her to seek immediate care.
“When I noticed swelling in my legs, I was like, ‘OK, I can’t continue to ignore this,’” Amy said. “But it’s still hard to accept the fact that there’s something wrong.”
Months later, it’s impossible to say precisely what caused this 36-year-old nurse’s heart to fail.
“It’s what we call an idiopathic cardiomyopathy,” said Darryl Elmouchi, MD, an electrophysiologist at Spectrum Health Medical Group. “Which is the fancy medical term for, ‘A weak heart, reasons for which no one quite knows.’”
Dr. Elmouchi suspects Reames may have contracted a virus that caused her body’s immune system to attack her heart.
“You get a random virus—a cold, the flu—and everything seems good but you just don’t recover the way you should,” Dr. Elmouchi said. “And what the science points out is, your body can create autoimmune reactions to whatever virus attacked you.”
Those reactions can affect the heart. It’s unclear if this is what happened to Reames, but it’s possible.
She had no prior history of heart problems and no family history of heart disease. She was an occasional smoker, and at this point she’d been away from work for about a year because of a back injury.
But she couldn’t have known she would spend the first week of August battling for her life.
‘Everything went south’
Reames called Spectrum Health on July 31 and described her symptoms to a nurse, who urged her to get to a hospital immediately.
She went to Spectrum Health Kelsey Hospital, about 6 miles from her home.
“I checked in and never checked out,” she said.
As an emergency room and intensive care unit nurse, Reames was in the unique position of understanding the nuances of her situation—the technical jargon, the data, the tests and the results.
Her heart rate was high, her heart rhythm abnormal, and an ultrasound gauged her ejection fraction—known as the EF, it indicates how well your heart is pumping blood—at 20 percent. A reading of 40 percent or lower can indicate heart failure or cardiomyopathy.
“I was nervous,” Reames said. “All these things were coming back abnormal.”
An ambulance took her to the Spectrum Health Fred and Lena Meijer Heart Center in Grand Rapids, where the following day she underwent more tests.
“When she arrived here … she was clearly not doing well,” Dr. Elmouchi said. “A lot of swelling, a lot of excess fluid, fluid in her lungs. An ultrasound showed her heart-pumping function was dramatically reduced from where it should be.”
She took medication to remove the fluid from her lungs, but her heart began to deteriorate further, Dr. Elmouchi said.
“They brought her to our heart catheterization lab to make sure there was not a blockage causing the weakness of her heart,” he said.
There was no blockage.
“It wasn’t an emergency, it was calm,” Reames remembers. “They wheeled me down. I remember going from the stretcher to the table and thinking, ‘Finally, I can relax. They’ll find out what’s wrong.’”
That’s the last thing she remembers—going from stretcher to table.
“Apparently, that’s when everything went south,” she said.
Said Dr. Elmouchi: “While she was in the catheterization lab, she decompensated. Her heart essentially gave out.
“At that point, she (transitioned from needing) aggressive cardiac care to emergent, life-saving cardiac care,” he said. “Her heart was so weak it would no longer support her body.”
‘As sick as sick can be’
To save her life, doctors used a mechanical pump, called an ECMO, to replace her heart function.
“It’s essentially a heart-lung bypass machine that can be hooked up and implanted during an emergency situation,” Dr. Elmouchi said. “That is something that cannot occur anywhere else nearby. It’s something that has to happen within minutes, or the patient will die.”
Once on the ECMO machine, Reames transferred to the intensive care unit.
“You don’t know if someone is going to survive or not,” Dr. Elmouchi said. “And she was about as sick as sick can be.”
A team of doctors began making contingency plans.
“If her heart didn’t start recovering, she would have been given an implantable ventricular assist device, or even a heart transplant,” Dr. Elmouchi said.
She was in the right place for such things, if it came to that.
“Those are two things that can only be performed, on the west side of the state, at the Meijer Heart Center,” Dr. Elmouchi said.
Reames ultimately spent about five days on the ECMO machine.
“Given about a week, her heart slowly started recovering,” Dr. Elmouchi said. “Not to normal, but recovering enough to where we could remove the ECMO machine and not have to give her a new heart or implantable heart pump.”
Still, she remained dangerously weak. She went into cardiac arrest on two separate occasions in the hospital.
“She was so acutely ill that within 24 hours she had five or six different cardiovascular specialists on her case,” Dr. Elmouchi said.
The multidisciplinary team included, among others, a heart transplant surgeon, intensive care doctors, an anesthesiologist and a cardiologist.
For his part, Dr. Elmouchi is an electrophysiologist. “I’m like the electrician of the heart,” he said.
What he discovered in Reames was a left bundle branch block—an “electrical malfunction of the heart.”
“Her heart muscle doesn’t beat in sync,” Dr. Elmouchi said. “Her right and lower left chambers beat somewhat independent of one another. It can lead to further weakening of the heart muscle.”
In lay terms: “It’s like an engine with a knock. It was a V8, and now two cylinders aren’t firing at the right time.”
The solution: a biventricular implantable cardioverter defibrillator.
“It’s a fancy pacemaker that can resynchronize the heart, make it stronger, beat more efficiently, and shock the heart if needed,” Dr. Elmouchi said. “It’s like she has a paramedic with her wherever she goes.”
Spectrum Health doctors place these in a few hundred patients each year.
“They’re quite common,” Dr. Elmouchi said. “Although not many people need them as badly as Amy did.”
The device was installed in Reames on Aug. 13 and she was released on Aug. 18, her daughter’s third birthday.
“She’s not back to normal,” Dr. Elmouchi said, “but she has a good chance of making an excellent recovery, which, honestly, is amazing. …She recognizes that had she not been lucky enough to experience the kind of care she received, she would not be here for sure.”
Reames heartily agrees.
“If I had been at any other hospital, I wouldn’t be talking to you today,” she said.
The experience has given her an appreciation for the paradox that is the human body—a system that is at once tremendously fragile, but then impossibly resilient.
“Being so close to not being around anymore, it definitely gives you more appreciation for what you have and the people you have in your life,” Reames said. “I don’t want to miss out on anything now.”
She’s still recovering, but she has quit smoking and she has firm plans for the days ahead.
“I wish I could do more things right now, but right now I can’t,” she said. “When that day comes, I’ll definitely be doing more. Just getting outside more, going places, doing things. Definitely being more active. I don’t want to waste precious time.”