Like many first-time parents, Carly and Chris Nabors settled into their new routine of feedings, naps and cuddling over late hours and long days. They were tired but little Lacie was their darling. They adored her.
A few weeks after healing from the delivery, Carly began to spend the warm days on walks with her newborn. It was summer, and she was eager to get out and moving again. A couple of months into her new routine, Carly noticed something strange happening: Instead of feeling better, she was feeling worse.
“I’d be short of breath when I’d walk, and I couldn’t make it as far as I had in the weeks after Lacie was born,” Carly said.
Then she started coughing so much that she had to prop herself up in bed to be able to sleep at night.
“It was getting weird, and I was having more and more symptoms,” she said.
Though she had no idea at the time, Carly was suffering from peripartum cardiomyopathy, a rare form of heart failure that happens during the last months of pregnancy or up to five months postpartum.
If you are experiencing two or more of these symptoms, you need to see a UCHealth provider for an evaluation of your heart:
- Shortness of breath (dyspnea)
- Persistent coughing or wheezing Buildup of excess fluid in body tissues (edema)
- Lack of appetite; nausea
- Increased heart rate
Heart failure can involve the heart’s left side, right side or both sides. Your body’s compensation mechanisms help explain why you may not become aware of your condition until years after your heart begins its decline. This is why it’s a good idea to have regular checkups with your doctor.
Heart failure symptoms are often not recognized as being from the heart. People mistakenly assume the symptoms are just signs of aging, or as for Carly, who was only 28, a normal side effect of parenthood.
“I was run-down,” she said. “But I just thought it was because I had a newborn — the not sleeping, all the running around and just life being a mess.
“I’ve now spent the past seven years listening to my body, but I should have listened to it sooner, right when the symptoms started.”
What is cardiomyopathy?
Cardiomyopathy is a disease of the heart muscle. And though there are many causes, such as alcohol abuse, high blood pressure and viral infections, peripartum (or postpartum) cardiomyopathy only occurs during or after pregnancy.
“We don’t know what causes peripartum cardiomyopathy, and there is no cure for it,” said Dr. Anthony Doing, UCHealth cardiologist in northern Colorado.
Peripartum cardiomyopathy occurs in 1.4% of all pregnancies.
In most cases, the heart muscle becomes enlarged, thinned, thickened or ridged. As it worsens, the heart becomes weaker and less able to pump blood through the body, and excess fluid begins to accumulate in the lungs and legs, according to the American Heart Association.
Symptoms of cardiomyopathy
It was only after about a month of symptoms and diminishing breast milk supply that Carly decided it was time to seek medical advice. Many tests later, doctors still didn’t have a definitive answer for her.
“All the doctors had different ideas and things they wanted to try,” Chris said, adding that some of those options — such as a thyroid medication Carly would have to take for the rest of her life — weren’t things they wanted to consider until they had a true diagnosis.
Doing said that because peripartum cardiomyopathy is so rare, it is often mistaken for illnesses such as bronchitis, or as in Carly’s case, thyroid issues.
“And 99.99% of the time, that’s what it is,” he added.
Also, women who experience symptoms – shortness of breath and swelling in the legs or abdomen — before delivery often associate them with normal pregnancy. And, most of the time, it is something other than peripartum cardiomyopathy, he said. When symptoms persist (the cough doesn’t go away), then it may be a rare case that is cardiac in origin.
For Carly, her symptoms didn’t go away. She was feeling so unwell one day that she had her sister drive her from their Loveland home to the emergency room at UCHealth Medical Center of the Rockies. There, her heart was finally tested.
When the heart weakens due to heart disease
A healthy heart empties blood and then refills 60-80 times a minute.
“A normal heart squeezes out 55-70% of the blood,” Doing said.
This percentage is called an ejection fraction.
An angiogram at the ER showed that Carly’s ejection fraction was less than 25%. She was immediately admitted to the hospital’s cardiac unit.
“I was at work when she called,” Chris recalled. “She said, ‘They think it’s my heart.’”
Though it was a relief to finally have a diagnosis, the Nabors’ life quickly changed once more. Carly spent the next week at Medical Center of the Rockies. Her sister watched Lacie so that Chris could stay by Carly’s side.
“It was hard to wrap my head around it,” Carly said. “Here I was with a five-and-a-half-month-old and my body was shutting down.”
Treatment for peripartum cardiomyopathy
Doing ran a series of tests on Carly to make sure they hadn’t missed any other issues. Plaque in the arteries is common among older patients with heart failure, but Carly was young. However, sometimes pregnancy or childbirth can affect the structural integrity of the smooth connective tissues of the arteries. He also checked for iron and thyroid problems, but he found none of these issues.
The heart pumps out six liters of blood per minute. Carly’s heart was pumping out less than half that, so it also wasn’t able to clear the extra fluid from around the heart. That fluid can build up in the lungs and legs. What also happens when the heart is damaged is that a “cascade of hormones” is released by the body to help compensate. But long term, this has a damaging effect, Doing said.
“Short term, that’s fine,” he added. “But it is like driving a car 80 mph and forgetting to take it out of second gear. Long term, it can’t take it.”
So, people with heart failure are placed on a series of medications that block those hormones. Carly is also on Lasix, a loop diuretic (water pill) that prevents her body from absorbing too much salt.
Doing’s work is delicate: He has to find the right balance of medication that will address her body’s response to her failing heart without having detrimental side effects, such as lowering her blood pressure or affecting kidney functions.
“It’s complicated, and patients end up with many medicines for all different times of the day. They really have to pay attention, so it’s a little tricky,” Doing said. “Carly has obstacles, and there are things we face every time we see her. But with determination and persistence, she’s accomplished quite a bit.”
Finding her strength to manage heart failure
“We had a lot of fears early on that we wouldn’t have long,” Chris said. “But we don’t worry about how long she might have anymore, instead we just focus on enjoying every moment.”
A mother with peripartum cardiomyopathy has a 30-40% chance of recovering her heart function, Doing said. Or she may never recover or become worse. Not much is known about why the outcomes vary. And because of the weakened heart, another pregnancy is very dangerous for mom and baby. Carly has been advised not to have more children.
“Mortality rate is 10% over two years, so (peripartum cardiomyopathy) is very dangerous,” Doing said.
Chris said that in the beginning, it was hard to see his wife — a vibrant woman he’d met at a dude ranch and fallen in love with for her adventurous spirit — struggle so much.
“Everything was so new, and she was struggling to do the things she was doing before,” he said. “At one point, she couldn’t even carry Lacie up the stairs.”
With a diagnosis came a plan — and Carly has embraced every step.
“Having low heart function after delivering a baby, especially when it’s severely reduced, is a difficult and dangerous circumstance,” Doing said. “Getting on medications can be time-consuming and confusing. But it’s because Carly is so involved in her own care that she’s been taking care of her child now for almost eight years.”
Managing her heart failure
It hasn’t been easy, Carly admitted. “It’s been a big learning curve.”
“Carly has continued a program of regularly scheduled exercise three times per week including treadmill, exercise bike and the elliptical machine,” Doing said. “Her ability to exercise remains good.”
Carly must limit her salt and water intake because of the increased risk of extra fluid buildup. She regularly checks her weight, as a 3-to-4-pound increase can mean she’s retaining fluid at dangerous levels.
Eating out is a challenge, too. Carly has learned to cook meals at home that fit her new requirements — and Chris also is supportive there.
“My role is just to tell her it tastes good,” he chuckled. Smiling at Carly, he continued, “I couldn’t do what she does. She’s amazing. My main job is supporting.”
After the first few months of treatment, Doing reviewed Carly’s condition. He tweaked her medication with the goal to get her off as many of the pills as possible.
But even with intervention, Carly’s heart function has fluctuated. And it is for that reason that Doing consults with his colleague Dr. Amrut Ambardekar, medical director of heart transplantation and cardiologist with the heart failure clinic at UCHealth University of Colorado Hospital at Anschutz Medical Campus.
Consulting Ambardekar not only provides Doing with a second opinion regarding Carly’s medications, but it also makes Ambardekar aware of her case if ever a heart transplant becomes necessary.
“You don’t want a heart transplant, as it is a big deal,” Doing explained. “And Carly is too healthy for that, but we wanted to make sure we got her evaluated for a transplant in case it does need to be an option.”
Carly sees Ambardekar about once a year.
“Being part of UCHealth facilitates that partnership,” Doing said.
And because Ambardekar visits with patients at the Heart and Vascular Center at Medical Center of the Rockies, Carly doesn’t have to travel to Denver.
Enjoying each day
Carly also has an implanted defibrillator. People with heart failure whose ejection fraction doesn’t improve more than 35% with medications have an increased risk for heart arrhythmia. A defibrillator can detect any arrhythmia and respond with a shock. Those with low heart function have a defibrillator that also serves as a pacemaker, which is able to synchronize heart rhythms. Carly got that device in 2013, and it was upgraded in 2018.
Carly also gets regular testing. There have been a few scares that brought them back from family camping trips, and her weak heart has limited activities like snowshoeing. But she’s taken up dirt-bike riding with her family and loves to camp.
“Aside from not being able to mountain bike up a hill, this has pushed us to try more stuff to enjoy,” she said. “And we aren’t waiting for that call every day. We don’t have control over a lot, so we pray a lot — and enjoy every day that we have.”