ATLANTA — Rachel Barnes had just given birth to twins, Lilly and Delilah when she noticed the swelling in her legs.
She informed her provider and was told it was nothing. One month later, she was diagnosed with peripartum cardiomyopathy (PPCM).
February is American Heart Month and 11Alive is helping raise awareness over conditions such as PPCM, which is also known as postpartum cardiomyopathy. About 1,000 to 1,300 women develop PPCM in the U.S. each year according to the American Heart Association.
For Barnes, it started with the swelling in her legs and then she developed a cough.
That, she said, is when "I realized that something was wrong."
Barnes went to her provider again and was told it was bronchitis. She kept getting worse and decided to go to Wellstar Kennestone Hospital - a place that Barnes said saved her heart.
"They told me I had bronchitis, but I kept getting sicker and sicker and sicker and very, very weak. So I decided to go to Kennestone, shout out to them they saved my life," she said.
At Wellstar, the mother was seen by Dr. Brian Howard, an advanced heart failure and transplant cardiologist. After some blood work, Dr. Howard diagnosed Barnes with PPCM.
"They said that I also had a pulmonary embolism in my lungs, a blood clot in the lung. So they took me back and did an echocardiogram, and they saw that my heart function was functioning at 15% and the normal function is 55% to 70%, so that I was in full-blown heart failure," said Barnes.
According to Dr. Howard, PPCM is a condition where the heart is weak. Barnes' heart was operating at a percentage below half of what is considered normal.
"A normal ejection fraction, which is just a marker we use to quantify the strength of the heart, is going to be in the range of 55 to 60%," said Dr. Howard.
PPCM is treatable and in most cases, the heart functions normally after. It's important to diagnose it early.
"So all forms of cardiomyopathy, if diagnosed early enough, we can get them on excellent medical regimens and many times the heart becomes normal again," said Dr. Howard.
One of the problems in diagnosing PPCM is that it mimics pregnancy symptoms, specifically those experienced in the third trimester.
"The struggle with a postpartum cardiomyopathy is that many pregnant women have those symptoms and it's just a symptom of the pregnancy. So it is a challenge for many people to become diagnosed with this, particularly in that last month of pregnancy," Dr. Howard said.
If pregnancy symptoms persist after the baby is delivered then that should raise concerns that something else might be happening, according to Dr. Howard.
The American Heart Association lists common symptoms as swelling in the feet and legs, and some shortness of breath. In more extreme cases women will have severe shortness of breath and prolonged swelling after delivery.
For Barnes, the symptoms started her third trimester.
"I was actually hospitalized at the end of my pregnancy and my stomach was swollen. That was fluid in my stretch marks, and I kept saying something was wrong. And they told me, 'No, you're just carrying multiples. This is what happens with multiples. There's nothing wrong with you,'" she said. "But come to find out, I was dying."
Barnes told 11Alive that she was close to death.
"The doctors told me I had about a couple of days left if I didn't go to the hospital, and the timing when I went to the hospital, I would be dead," said Barnes.
After being diagnosed, Barnes went home on a wearable defibrillator since she was at high risk for a cardiac arrest and wore it for 60 days.
"I had to go home on a life vest so that if I did go into a sudden cardiac arrest, this device would shock me and bring my heart back to life because I was at such a high risk for dying at home," she said.
Barnes also had to attend cardiac rehab to strengthen her heart back to a normal ejection fraction. Now, six months post-diagnosis, she has recovered.
"I'm fully recovered now. So you can recover but some people never recover. Some people never get their ejection fraction right back to normal, which is 55 to 70%. Mine is now 55%," she said.
Although Barnes has recovered from PPCM, she said that there is still a risk of relapse in the future.
"I could go back into heart failure at any given moment because I've been in heart failure before. My heart will never be the same," she said.
To raise awareness over PPCM and help educate women on this rare condition, Barnes is speaking out on her experience.
"Women end up dying from it, and it's sad because it's very preventable and it's preventable because they can just do like a BNP test to test your blood levels. And you know, they don't offer that during pregnancy until it's too late or something's wrong," said Barnes.
Barnes is part of a group of women who are speaking out about PPCM and took part in a new documentary that will be released by the PPCM Fund, Inc called, The Painful Truth: The US's Epidemic of Preventable Maternal Deaths.
The documentary follows different women as they talk about their experience with PPCM and their late diagnosis.
The founder of the PPCM Fund, Lindsay Staloff Peterson, is one of the women followed in the documentary and the woman behind the project. Her goal is to give women who have suffered through PPCM a voice.
"I am providing the PPCM Fund, Inc. platform for these survivors and their families through my nonprofit to educate people globally," said Peterson.
Barnes is happy to have recovered and is spending time with her family. She urges women to listen to their own bodies and follow up with postpartum care.
"it's important to follow up with your cardiologist, go to your doctor's appointments, listen to your doctors, but listen to your doctors that you trust," she said. "And most importantly, intuitively, listen to your body because your body will show you the signs that are needed to take care of itself."
To learn more about the PPCM Fund click here.