I started having severe shortness of breath at night a few days after I got home from the hospital. The shortness of breath made me anxious which led me to believe it was a panic attack. My husband woke up and I told him how I was feeling. I felt confident and so happy with my life. I had no clue why I was feeling this way. It felt like something was wrong, like I could die. This was the first time I told my husband that, if I died, I wanted him to change our daughter’s middle name to my first name. I didn’t want her to forget me.
I had a fairly normal pregnancy but now, in retrospect, there are a few symptoms that were likely indicators of my impending peripartum cardiomyopathy (PPCM) diagnosis.
There was one incident where I almost blacked out in a parking lot. I had my toddler in the shopping cart and I had to kneel down for a few minutes until the darkness in front of my eyes and dizziness passed. When I told my doctor about this plus the fact that my heart rate always ran high at my appointments, he ordered an EKG which came back normal. I didn’t worry about it after that.
*Side Note: An echocardiogram is needed to help diagnose PPCM. An echocardiogram is basically an ultrasound of your heart that can measure your ejection fraction (EF). EF is how much blood the left ventricle pumps out with each contraction. A person with an EF less than 45% is considered to be in heart failure.
During the last few weeks of my pregnancy, however, I started experiencing even more PPCM symptoms including what felt like unending nighttime urination (I was literally up every 1 to 2 hours going to the bathroom), extreme swelling of feet and ankles and a ton of weight gain (I gained less than 30lbs with my first pregnancy, with this one I gained over 50lbs). With my first pregnancy I didn’t experience any of these things at the extreme levels I was with this pregnancy. I was a little concerned and brought these issues up at each OB appointment. Everyone just told me it was normal, so I believed them. I mean, what do I know…
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 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?