When you face death, your perspective on luck changes.
I’m often on the receiving end of looks of pity — squinting eyes, corners of the mouth slightly turned downward with a slight tilt of the head. They’re often accompanied by statements of disbelief: “I can’t believe this happened to you” or “You’re so young.” Occasionally I’ll even get, “What are the odds?” or “What bad luck.”
Luck is a funny thing. Even in life’s most unfortunate moments, there are some ounces of fortune — a moment of luck or a silver lining, as some like to say.
My silver lining came two years ago when after the birth of my second daughter, I developed heart failure. It’s a diagnosis nobody wants to receive, but when you’re a mother to a newborn and toddler, it’s especially cruel.
Chances are, you’ve never heard of peripartum cardiomyopathy. I hadn’t, and I read just about every prenatal book out there prior to the birth of both of my daughters. Every time I had an ache or a weird feeling that couldn’t be rationally explained — which is just about every weird feeling when you’re pregnant — I would immediately grab my laptop and get to work, determined to discover what ailed me.
Toward the end of my pregnancy, I was miserable. I was swollen, short of breath and ready for it to all to be over. Some women like being pregnant. I often feel ashamed to say I didn’t — not because of what I felt on the outside, but what I felt on the inside, wrought with worry that something could be wrong.
When I gained 10 pounds in one week, I was convinced my body was mounting an attack against me, punishing me for having a baby so late in life. At 36, after all, you’re considered ancient in childbearing years. For every test a younger mother-to-be had to have, I went through a more advanced process. All of my ultrasound screenings were done at a nearby hospital rather than my obstetrician’s office. I wasn’t considered “high risk,” but I was at a higher risk of developing a fetus with abnormalities.
That week when I gained 10 pounds, my doctor was concerned I may have preeclampsia, a deadly condition that must be treated right away. But when those test results came back clear, any symptom I was feeling was dismissed as “normal pregnancy side effects.”
Knowing something wasn't right
On the night before I was scheduled to be induced, I woke to my water breaking — just two hours before I was to head to the hospital. It was another one of those, “what are the odds?” moments. Despite what is depicted on the small and big screen in just about every comedic moment involving childbirth, only about 10 percent to 15 percent of women actually have their water break before contractions begin.
I headed to the hospital, and three days later, after an emergency C-section when my baby’s heart rate unexpectedly dropped, I returned home — sure that my “what are the odds?” moments were over.
Like any new mom, I was tired and overwhelmed. Add in having to also care for a 3-year-old, and I felt like I couldn’t keep up.
Something wasn’t right, though. All moms are tired, but are they so tired that when they simply carry their babies to the changing table, it feels as if they just sprinted around the block?
For my own sanity, I made an appointment with my family physician. After a barrage of tests, I was sent home with an antibiotic and warning that if I didn’t feel better to come back for additional tests.
After the weekend, my condition hadn’t improved. Every simple task was physically overwhelming to the point where I could hardly catch my breath. At one point while grabbing a drink at the kitchen sink, I fainted, awaking only after I hit the ground. The silver lining — my newborn daughter was blissfully lying in her swinging chair, unaware at what had just happened.
When I returned to the doctor, I was sent down the hall for an echocardiogram, a type of ultrasound that checks the size of your heart and how well it’s working. When the technician said he wanted to get the results to my doctor and left me in the room to redress, I had an uneasy feeling.
That feeling was confirmed when I saw the nurse running to grab me before I could check out, telling me the doctor wanted to see me in his office.
There’s no possible instance that can be good when a doctor wants to see you in his office. After all, bad news seems to always be delivered when you’re sitting in a comfortable chair rather than with your feet hanging off the side of an exam table.
A normal healthy heart has an ejection fraction (EF) of 55 percent to 65 percent. EF is how much blood your heart pumps during each heartbeat.
Mine was 23 percent.
Making matters worse
Each year in the United States, about 1,300 women are diagnosed with peripartum cardiomyopathy during the end of the third trimester of pregnancy or within a few months of giving birth. No one yet knows what causes this type of heart failure, and research has not concluded a definitive cause. However, some research has pointed to a possible genetic link.
It’s difficult to explain in words the feeling of being told you are in severe heart failure. Disbelief is more likely than actual words. As a 36-year-old, I had never had any major health problems. I was relatively healthy — other than the occasional treat I indulged in that probably would draw the ire of nutritionists.
Yet there I sat across from my doctor, wondering how this could be happening to me.
To make matters worse, I also had a blood clot in my heart. Three weeks after diagnosis, I suffered a stroke, though had no lasting effects — another silver lining.
I spent the next several months planning for the end, should it arrive. I wrote down every username and password I could think of for my husband.
I set up a secret gmail account where for several months I sent reflections of our favorite times together, advice for those prickly teenage years and photos of me with my two young daughters so that one day if I weren’t around, they would know of their mother.
I also emailed my husband, passing along little reminders, notes of encouragement and pleads for him to make sure our girls knew how much I loved them.
Instead of enjoying every moment with them, I spent countless hours worrying that I would drop my newborn if I should pass out or die while holding her. Even though I knew they would be OK, I wept at the thought of my then-3-year-old crying out for me at night.
I suspect if you ask anyone with a serious condition, he or she will tell you the mental anguish is far worse than the physical. Though walking from room to room at times seemed unbearable, the pain I’ve experienced at the thought of leaving my two young daughters behind has been insufferable.
It’s now been almost three years since my initial diagnosis. My ejection fraction has bounced back — not yet recovered, but better. Though for the past couple of years I’ve gone against the grain and not shared any of my plight on social media, I’ve started to open up more and share my experiences.
I wasn’t in denial. I’ve been very well aware of my condition. It’s nearly impossible not to think about it when I catch a glimpse of myself in the mirror before stepping into the shower — seeing the bulge that protrudes from my chest thanks to an implanted defibrillator. It’s meant to save my life should my heart decide to stop beating one day.
Dealing with the emotions
It’s also difficult not to be angry — angry about the time that has been robbed from me, the moments when I look at my two young daughters and should feel pure joy but instead succumb to sheer panic that these moments are numbered.
Yet there is no perpetrator to blame or hold accountable.
No matter how much I want to forget, writing a Facebook post, having a conversation or even jotting down a few thoughts in a personal journal leaves little room to deny that this very scary thing is happening to you.
Yet by opening up, I’ve once again found a silver lining.
Though I felt powerless at first, unable to fully grasp my diagnosis, I have become empowered in so many ways during this journey.
Anyone who has been diagnosed with a disease knows how isolating it can be. It’s difficult not to feel as if your world is crumbling around you — just as you’re expected to “stay strong” and “hang in there.”
Add in the stress from this turbulent political era when feeling like being sick equates to having done something wrong, and it’s easy to feel alone and to lose a piece of yourself.
Sometimes, though, you find yourself in the most turbulent times, and you discover ways you can help others find themselves as well.
Sometimes it takes a disease to wake you up.
It’s then, that you feel the strongest, no matter what’s happening inside your body.