I had never heard of it before. A man stood at the foot of my bed and announced that I had Postpartum Cardiomyopathy (PPCM). I didn't know what that was. I’d honestly never even really heard the term “cardiomyopathy” before. I laughed. After three weeks of living with low oxygen and a cough that hurt every muscle in my body, I finally had a diagnosis. I didn't care what it meant! It meant we knew what was wrong with me and we could make a plan to fix it.
The plan seemed simple
The plan seemed simple - pump these medications and wear this vest. Everything seemed great until two days later when they came with the vest to show me how to wear it. It was then that it hit me: it was a defibrillation vest. I was advised to never take it off except to shower, and that when I do have to take it off I should be supervised because I could drop dead. The vest wouldn’t prevent cardiac arrest, but it just might keep me alive long enough for emergency responders to come. I looked at the pamphlet and all of the pictures showed people in their 70's or 80's. The weight started sinking in.
I had to consider my own mortality
After that, I decided to search Facebook for groups of people who had my condition. I couldn't find any. Finally, I made the mistake of Googling postpartum cardiomyopathy. The results weren’t as optimistic as I'd felt initially. I could, in fact, die from this. I was 28 years old and had just started my family and suddenly I had to consider my own mortality.
Most of the time I was able to focus on my beautiful new stage of life. During the day I could pretend everything was perfect. There were only a few occasions each day where I wondered if I would feel any warning signs before going into cardiac arrest. Would I be able to set my babies down before I crashed to the ground so I wouldn't suffocate them? But then I'd make it to my chair and I'd feel at ease again.
What if I did not wake up?
Night times were different though. I was blessed to have family who helped my husband take care of my twins at night so I could rest and my body could heal. But it was hard for me as a new mother to give that up. I wanted to be the one taking care of them. And as I'd lay in bed alone, listening to the adults talk to each other in the other room and the babies cry, I'd wonder what my children's world would look like without me. What if I did not wake up?
I was lucky
I was lucky. I had nurses and doctors who listened to me when I said something wasn't right. Who kept testing me and testing me until they figured it out. It took more than one echocardiogram for my heart failure to become evident. I was lucky they didn't rule it out after the first test. This condition is very rare and unfortunately many women are dismissed when they return to the hospital and describe their symptoms. “New mom anxiety” or “New mom exhaustion” is what they’re told before they’re sent home.
Insist on bloodwork
If you feel like you can't breathe when you’re walking, or when you lay flat on your back - go to the ER. Insist on bloodwork to measure your BNP. If it’s okay but you start feeling worse, start swelling, or develop a horrible cough, go back again and ask for more bloodwork. It took me two separate hospital stays - two weeks apart - to get a diagnosis and people DID believe me.
The good news is that PPCM is a dilated form of cardiomyopathy. It’s not a death sentence. You can recover! My ejection fraction (EF) at diagnosis was 30%. A normal EF is 50%-70%. With the help of my cardiologist, and my family and friends, my heart was able to mostly recover within two months. And now, 4 years later my EF is at a comfortable 60% functionality. While I'll always have this diagnosis, I am happy to say I was able to recover.
Have you shared YOUR heart failure story with us yet?