Why I Go Red for Women: I’m a Survivor

Today is National Wear Red Day for the Go Red for Women campaign from the American Heart Association. I’m wearing my red, not just because I think heart health is important, or because I know that heart disease is the #1 killer of women (heart disease and stroke kill 1 in 3), but because this fight is personal for me: I’m a survivor. Not just in a Beyonce sense, but as a literal actual survivor of a congenital heart defect, a cardiac pregnancy complication, and heart failure.

On April 1, 2012, I was three days post-c-section. My recovery had gone slower than most, and I was still in the hospital, a fact for which I now thank God. In the wee hours of the morning, I woke up and finally felt strong enough to try to walk the few feet from my hospital bed to the bathroom. It felt triumphant. My husband assisted me, one of our new babies nearby in a bassinet*. But as I inched my way back to my hospital bed, every inch of my recently-ripped-apart abdomen screaming in pain, I found it hard to catch my breath. “I can’t breathe,” I said to Jon. He’s an ER doctor, and his mantra is generally “if you can talk, you can breathe,” so he helped me back into bed and told me to relax and catch my breath. But even after sitting down, it was getting harder and harder to fill my lungs with air.

“This is serious,” I said, “call the nurse.” He pressed the call button and continued reassuring me, telling me to take deep breaths. Instead of air, I felt my lungs beginning to fill with fluid. I could hear crackling in my chest. I felt like I was drowning without any water, because the water was inside my lungs. I have never felt such a panic. I could see in my husband’s expert face that there was something serious going on, and I think I remember him yelling to people in the hallway that we needed the code team and a crash cart. As I continued to fight to breathe, I knew I needed to be intubated, and from the look on his face, I could tell that if there’d been a cart nearby, he would have started to do it himself. It felt like ages before anyone arrived to help. Some of the longest moments of my life.

Soon the room filled with doctors, nurses, and therapists. I remember feeling increasingly panicked as masks were pressed into my face. Even though I knew they were trying to save me, it felt like they were making things worse. Instinctively, I was pushing them away, still fighting to breathe. Soon needles were pressed into my arms and everything fades.

I woke up 24 hours later in the ICU having just pulled out my own breathing tube. I soon learned I was in congestive heart failure. One cardiologist described my crash as a “catastrophic failure.” They had removed 7 liters of fluid from my body while I was sedated and intubated, taking a load off my heart. I had experienced a rare but increasingly common cardiac pregnancy complication known as peripartum cardiomyopathy. Basically the stress of my twin pregnancy and delivery had pushed my heart to the point of failure.

While peripartum cardiomyopathy can happen to anyone, even people with a healthy heart, I learned a few months later that my crash was so “catastrophic” because I had a weak heart to begin with, because I had an up-to-that-point undiagnosed congenital heart defect known as left ventricle non-compaction syndrome. Basically, when my heart was formed, the left ventricle, which is the part that squeezes your blood out into your body, didn’t form right and was left weak, unable to squeeze effectively.

Medicines (a beta blocker and an ACE inhibitor, plus an occasional diuretic) helped my heart return to a normal range of function and keep me there, but they cost me my ability to breastfeed my babies, as they are not lactation safe. I am still on these medicines, and while I don’t always love some of the side effects (fatigue, forgetfulness, sweating), I am grateful that they have so far kept me from needing a defibrillator or pacemaker as was occasionally discussed when my diagnosis was new. Genetic testing revealed that my heart defect was the result of a genetic mutation, and now we are in the process of getting our daughters tested to see if they inherited this mutation. I have been told any future pregnancies would be life-threatening, so I will not be having any more babies.

What I want people to know is that cardiac pregnancy complications can happen to anyone, and their symptoms can be hard to spot, because they are so often common to pregnancy itself: fatigue, swollen ankles, shortness of breath, frequent nighttime urination, and even heart palpitations are common to many pregnant women whose hearts are fine. I fainted in Target while pregnant, for example, and it was attributed to my increased blood volume. I would urge all women who think they may be having cardiac symptoms while pregnant to ask their doctor if their hearts are a concern. I, for one, am so very grateful that I insisted I didn’t feel well enough to go home, which led to me still being inpatient when I crashed. I am convinced that if I had been at home, I would have had a much more severe outcome. If you are having palpitations, shortness of breath, and fatigue, ask for your heart to be evaluated. 

I’m sharing my story here today and as a member of the Central Arkansas chapter of the AHA’s 2015 Survivor Gallery because I believe it’s vitally important to raise awareness about women’s heart health. Heart disease and stroke are the number one killers of women, and cardiac complications are the number one cause of maternal death. Get familiar with the signs of heart attack and stroke. Do not hesitate to seek help if you experience any of these signs. Learn about hands-only CPR so that you can help someone in cardiac distress. Finally, take good care of yourself and help prevent heart disease and stroke by eating a healthy diet, getting active, and getting enough sleep. Women are so often so concerned with all the other people we have to care for, but it’s important to remember self-care so that you can stay healthy and strong and keep using your heart to love the people who need you.

Every day since April 1, 2012 feels like a gift to me, and any way I can help spread awareness feels like a blessing. Take care of your hearts, and encourage the women in your life to take care of theirs.

 

 

*Claire was at the nearby Children’s Hospital recovering from surgery to repair her myelomeningocele.