By Brittany Turman
“You have a little bit of heart failure.” These are not words that you expect to hear when you’re 28 years old and 10 days out from having your first child. But hear them I did. I still hear them, three years later.
I am one of 1,300 women in America who has been diagnosed with peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy. PPCM is a rare form of heart failure that typically occurs during the last month of pregnancy or within the first five months after giving birth.
As I lay there in the first floor emergency room of my local hospital, my 10 day old son was on the 14th floor in the NICU, recovering from an infection that we both developed during labor. I had experienced a pretty uneventful pregnancy, aside from being diagnosed with gestational diabetes (and having to slow down on my ice cream and french fry intake), but a long labor that ended in an emergency cesarean section had taken its toll on both of us.
“Heart failure?” – I was stunned. I had gone to urgent care that morning with my mother-in-law in tow. We thought I had a bad cold. I had experienced trouble breathing for a few days and the night before had been unable to lie down in bed. Each time I put my head on my pillow, I felt like I was drowning. I went in that day thinking they’d give me a breathing treatment and off to visit my son I would do. The doctor on duty sat me down and explained that she was going to order an IV and oxygen immediately. I was going to the emergency room because she thought I had a pulmonary embolism.
Looking back now, I don’t know how I couldn’t have known something serious was amiss. We will never know when my PPCM started, but I do know that I was incredibly swollen during my third trimester of pregnancy. Swollen to the point where my vigilant grandmother-in-law, GG, had been carefully watching me and ordering me to put my feet up constantly. Once I gave birth to my son, Paul, instead of losing weight, I was gaining each day at a rapid pace. Walking up three or four steps winded me and I barely had the energy to bathe myself.
My son was born on November 5, 2014. It was a chilly Wednesday. We had been in the hospital since Monday when I was sent over to be induced for having low amniotic fluid. I was discharged that Friday and on the following Monday, returned to spend the day with my son. I had been a little uncomfortable over the weekend, but then again I had just spent five days in the hospital and gone through labor, in addition to major surgery. I chalked all of my symptoms up to being a part of the recovery process. That afternoon, after spending all day with my son and finally feeling like a “real” Mom, I could barely make my way from the NICU back to the parking garage.
PPCM is diagnosed based upon the heart’s ejection fraction (EF). Ejection Fraction is how much blood the left ventricle of your heart pumps out with each contraction. A normal EF can be between 55 and 70. My EF in the emergency room was 50%. Based upon my EF and the other symptoms I was exhibiting (severe shortness of breath, swelling, rapid weight gain, extreme fatigue and very high blood pressure), I was issued the diagnosis of PPCM.
Once I was diagnosed, the team of doctors and nurses attending me sprang into action. I cannot say enough things about my local hospital. They saved my life. An IV of Lasix (Furosemide), a drug used to reduce extra fluid in the body, was immediately started. The fun part? I would get to use the bathroom all night long in a beside commode that essentially served as a giant measuring cup. Even better? When you’re a patient on the cardiology unit and you have heart failure, they write your weight on a giant white board in your room. Let’s just say that the entire experience humbled me.
After two days in the hospital, I was discharged. I lost about four gallons of fluid from my body during that stay. When we went to get my son from the NICU (he was discharged one day after I was), one of the nurses that I had interacted with regularly did not recognize me because my face had thinned out so much ( I was not allowed to go up and see my son during my second hospital stay).
Life after the hospital
Post-hospital, I had to keep up with a regimen of several different medications in order to stabilize my blood pressure, my fluid levels, and my heart rate. Six months after my diagnosis, an echocardiogram showed that my EF had gone up to 90%. I was deemed “recovered.”
Recovery is a funny thing. I know that I have a heart that has dead cardiac muscle. I know that with any disease, there is a chance for relapse and PPCM is no exception. I am a member of support groups and every few weeks we have one of our “heart sisters” in the hospital, or worse, passing away. There is a tremendous amount of joy that comes with being recovered, but there is also guilt.
While I was taking medication, I had so many different pills to take at different times that I set alarms on my phone to alert me as to when to take them. I still have those alarms on my phone. I don’t ever want to forget to seize each moment of my life. Those alarms help me remember.