Flashbacks After PPCM
Testing and monitoring
I was pumped with medications, people had to measure and record the quantity of my pee, I had bloodwork done twice a day - once in the afternoon and once at 3:00 am. I also received two blood transfusions. And those were just the things happening in my room. It didn't include the testing.
Before I was officially diagnosed, I'd have some kind of testing done almost every day. In the morning I would ask to visit my babies in the NICU and be told that I couldn't because the hospitalist wanted to run a test and they didn't know when that test would be yet.
After hours of waiting, some hospital workers would come to get me and push me away on a bed. Then, they'd leave me alone in a cold and empty hallway. I'd look at the pictures on the wall and count the ceiling tiles and I'd try not to think about what they'd find in the next room. I spent a lot of time on my back staring at ceilings.
I relived my fears every day
Three months after my diagnosis I went back to work. My heart function had raised from 30% ejection fraction to a low normal at 50%. But I was still afraid of relapse. I thought about my experience and my fears every day for at least a year. Every day I wondered if I would be able to veer off the road and crash into a fence instead of another driver if I went into cardiac arrest. I always tried to be prepared to find the safest way to die where I would hurt or traumatize the least amount of people.
Suddenly I couldn't breathe
And then time moved on. I mostly didn't think about it anymore. One day, about three years after diagnosis, I took a pilates class. At the end, we all laid on our backs for some stretches. They dimmed the lights. And staring at those dimly lit 16"x 32" ceiling tiles took me right back to those cold lonely hallways and those strange testing rooms. You know - those rooms where a tech can see everything that's going on inside of you, but they can't tell you anything about it and you have to wait for hours before a doctor comes in to explain it to you. And suddenly I couldn't breathe.
My first real flashback
It was my first real flashback. I felt like my lungs were full of fluid again, and I was suffocating. I felt that same fear of dying I'd forgotten about for the past few years, and I tried not to break down and cry in front of a room full of strangers.
I've had a few other flashbacks since then, but I think the worst flashback I've had was when I woke up from a minor surgery recently with a heart monitor on. No one told me that everyone gets one during surgery, and when I woke up I sat straight up and tried to pull it off. I yelled for a nurse and asked why I had it. I thought I was starting over, and I was going to have to live that life again.
A good support system
Flashbacks are common after PPCM. I think we all experience them. Sometimes we're able to address them and face them ourselves. So far, I've been lucky in that way. What we have gone through is real and it's traumatic. It forces us to see life differently than we ever have before, and differently from how most young women see it. Our mortality is a reality and a fragile one at that.
My advice? Find a good support system. Someone you can confide in. Maybe that's a spouse or a family member, maybe it's a good friend, or maybe it's a therapist. But I've found that addressing the fear with someone helps in being able to confront it on my own.
Do you use exercise to help manage your heart failure?