In the middle of a pandemic, Jamie Onofrio learned the news she never expected to hear as a young newlywed and new mom – she was in heart failure. Luckily, Jamie found a medical professional familiar with PPCM who help saved her life. Jamie’s wish is for all moms to have the opportunity to get early, proper treatment for peripartum cardiomyopathy. Here is Jamie’s story.
On January 21, 2021, I received a phone call from my cardiologist explaining the results of my echocardiogram. I hadn’t expected such a quick turnaround; I knew in my gut something was wrong. The words “ejection fraction” and “heart failure” became part of my vocabulary sooner than a 31-year-old newlywed, and mother of a two-month-old would hope. However, this meant we had an answer to my severe heart palpitations and shortness of breath.
I was diagnosed with peripartum cardiomyopathy, with an ejection fraction of 30%. I immediately broke down, held my newborn son, and called my husband to come home from work. All I could say was “I am going to die, and I don’t want to be alone”
Once I regained my composure, my cardiologist coordinated a Zoom call for the three of us to discuss what this diagnosis meant. My husband and I had a slew of questions, and my wonderful doctor addressed all to the extent she could. It quickly became clear to us this condition was very rare, without a great deal of awareness. There were many theories as to what causes peripartum cardiomyopathy (PPCM) and risk factors, but nothing appeared concrete.
Reflecting on the pregnancy; my (now) husband and I were beyond elated. An unexpected but very welcome surprise of a baby boy turned our world upside down, inside out. However, it was a difficult nine months.
I developed gestational diabetes, which was unresponsive to a good diet and exercise. Ultimately I needed insulin to control my glucose levels. Also, around seventeen weeks, heart palpitations began. I immediately called my doctor, who recommended a 24-hour Holter Monitor. Everything was (fortunately) benign, but that was the extent of treatment. The doctor suggested more rest and anxiety management. Once eight months came, I developed gestational hypertension which quickly rose to dangerous levels, indicating preeclampsia.
The safest route was to plan an induction. At 38 weeks on November 23, 2021, at 11:10 pm, our beautiful son, James Dominic was born.
The first weeks after our son was born, we were in survival mode, as are many new parents. However, I was alarmed at how much more intense my heart palpitations were, but I attributed it to hormones, anxiety, and lack of sleep. They happened at unpredictable times, even at rest. I recall having a nice peaceful dinner with my husband, and I could see my left breast pounding through my shirt; my heart once again racing for no apparent reason.
My first solo “outing” was a trip to the grocery store. When the cart got too heavy I was forced to stop and catch my breath. Once again, I figured I was just out of shape and my body needed more time to recover from birth.
This continued for weeks, and I Googled my symptoms with the word “postpartum”. Immediately, peripartum cardiomyopathy flooded the search page, yet ironically, with very little information. Panic set in, but the continual reassurance of being “extremely rare” brought some comfort. Regardless, I decided to call my OBGYN to schedule an appointment for the next day.
Since my husband was working, I had to bring my son into the office which was a first for me. The doctor could see I was a bit frazzled due to his crying, but he took a good look up and down, took my blood pressure, and said that I did not look like the “typical” peripartum cardiomyopathy patient. I was not gasping for air, didn’t feel completely run down, and my blood pressure was great. I suppose all it took was a five-minute appointment to conclude I was off the hook; that didn’t sit well with me.
A couple of weeks later (after making an appointment with the cardiologist) I was introduced to not my previous doctor, but a new physician’s assistant. He spent close to an hour addressing my concerns and sympathized with my postpartum state of mind. I learned that his wife was also pregnant; whether that attributed to his extra attention I will never know, but it saved my life. This man was the first person to consider a PPCM diagnosis and promptly ordered an echocardiogram.
That echocardiogram on January 21, 2021, was the appointment that spun my life into a 180. I still cannot find the right words to describe the feelings I had while hearing the diagnosis from the cardiologist, who interpreted my result. It has been four weeks since my diagnosis, and despite the ups and downs, I am determined to make a full recovery by taking care of my body and my family as best I can.
My treatment plan for the next ninety days includes wearing a Life Vest in the event of cardiac arrest. With my ejection fraction, I am at higher risk for a life-threatening event. I am also taking an ACE inhibitor, Lisinopril, and a beta-blocker, Carvedilol which is a popular medication combination. I thank God my metabolic panel came back normal, along with my BNP (a protein that detects heart failure). It’s strange to think one of the most beautiful experiences in life can cause such a life-altering health issue.
Nothing in life is certain; my journey to recovery is no exception. However, I am thankful to have found the Facebook group Peripartum Cardiomyopathy (PPCM) Survivor Support group. I know I am not alone; my fellow heart sisters are always there to listen and guide. I pray we increase awareness of this condition; including routine blood, EKG, and echocardiogram testing during pregnancy.
I would love to see “rare” removed from the PPCM association. I believe it is either a devastating case of misdiagnosis or worse, no diagnosis. No child should be without their mother. The sooner a woman begins proper treatment, her chance of survival is quite promising according to the literature. God bless every woman who is battling peripartum cardiomyopathy; we will get through this.
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