Ever heard of it? Probably not unless you’ve personally been diagnosed with peripartum cardiomyopathy (PPCM) or you know someone who has the diagnosis. I had certainly never heard of it. Even though I am a huge planner and tried to learn about any and all issues that could arise during pregnancy, I don’t remember seeing anything about this disease. Not on the pregnancy and baby blogs, not in the information I got from my doctor, and not during any of my appointments.
PPCM is rare with only about 1,000 US women being diagnosed with it each year. I’m sure this contributes to the lack of awareness but PPCM can be deadly. Over the course of this blog, I am going to write about my personal experience with this condition from diagnosis, the hospital stay, and life post heart transplant.
So, what is peripartum cardiomyopathy after all? According to the American Heart Association (AHA), PPCM is
“an uncommon form of heart failure that happens during the last month of pregnancy or up to five months after giving birth. Cardiomyopathy literally means heart muscle disease.
PPCM is a dilated form of the condition, which means the heart chambers enlarge and the muscle weakens. This causes a decrease in the percentage of blood ejected from the left ventricle of the heart with each contraction. That leads to less blood flow and the heart is no longer able to meet the demands of the body’s organs for oxygen, affecting the lungs, liver, and other body systems.”
Symptoms are hard to diagnose because many of them are so similar to normal third trimester symptoms. According to the AHA symptoms include:
- Fatigue
- Feeling of heart racing or skipping beats (palpitations)
- Increased nighttime urination (nocturia)
- Shortness of breath with activity and when lying flat
- Swelling of the ankles
- Swollen neck veins
- Low blood pressure or it may drop when standing up.
My hope in sharing my experience with PPCM on this blog is to help spread awareness about this condition and hopefully help prevent other women from having to go through what I did or even worse. As the name of my favorite PPCM awareness group states, let’s SAVE THE MOMMIES!
Amazing— can’t wait for your next post
I experienced PPCM after the birth of my second son. I had no idea a woman could develop heart problems with pregnancy, so I was shocked when I saw my OBGYN and he sent me straight to the cardiologist. And sitting there in the cardiologist’s office after the EKG, I was even more surprised to hear him say, “It looks like you’ve had a heart attack and your heart isn’t pumping the way it should”.
Although yours became so much more serious so quickly and with terrible complications, your story sounded exactly like mine in the beginning (short of breath, waking up gasping for air, feeling light headed and faint, the dr telling me to not ever have any more children). I’m so thankful to hear that you’re doing well now – your family is beautiful. My youngest is now 19 – enjoy your family; they grow up fast.
Thanks for sharing your story. I’d never heard of it either but I really hope with this blog and other things I am doing, I can get the word out so more pregnant women are aware of it.
I experienced PPCM 5 months after the birth of my third daughter. I was feeling tired, my blood pressure was low and my heart rate was high. I had palpitations as well… I was diagnosed with PPCM
Thanks for sharing, Maria