Like many who face this condition, Taylor Hughes had never heard of peripartum cardiomyopathy – pregnancy-induced heart failure. She thought her only concern going into her second pregnancy was the well being of her son. Unfortunately, shortly after his birth, she was fighting for her life. Here is Taylor’s story.
I found out I was pregnant in November of 2018 and had no idea that this pregnancy would nearly kill me. I had previously had a baby in 2015 that was fairly normal except for a brief miscarriage scare. Thankfully my son was born unharmed. I was nervous to get pregnant again but I knew I wanted another baby.
My pregnancy was pretty normal until the last couple of months. I noticed my hands were falling asleep constantly. When I mentioned this issue to my OBGYN she said it was normal and the baby was probably causing it. I continued on to carry my son full term and had a healthy delivery at 38 weeks and 5 days.
Immediately after having my son, I noticed I was having a very difficult time breathing while laying down and my legs/feet were swelling. In addition, my hands were still falling asleep, I experienced extreme fatigue, and my heart would feel like it was pounding right out of my chest. My breathing became such an issue that for months I was sleeping sitting upright. Finally, I couldn’t take it anymore and went to the doctor.
The doctor diagnosed me with GERD and gave me medication with a return visit planned for two weeks out. I woke up one morning, a couple of days later, and knew in my gut that something was wrong. My hands and feet were as cold as ice, my heart was racing, and I was extremely pale. I went to urgent care where they did an EKG and determined I had an irregular heartbeat. They were concerned about blood clots in my lungs. They told me I needed to get to the ER right away.
The ER staff ran several tests including blood work, an X-ray, CT scan, and EKG. There was so much fluid showing in my X-ray that they said I had severe pneumonia. They immediately started breathing treatments among other things…unfortunately a lot of that first day is a blur.
The next day I had an echocardiogram and that’s when they determined that I had congestive heart failure. The cardiologist at the hospital was extremely cold and not comforting at all during that conversation. After my panic attack, all I could think about was how this was a death sentence. I’m 30 and I have heart failure. I kept thinking I would never see my kids again.
I was unable to leave the hospital until I was fitted with a LifeVest and given a list of medications. A LifeVest is a personal defibrillator that is worn by people at risk for sudden cardiac arrest. If I went into a dangerous arrhythmia, the LifeVest would shock my heart back into a normal rhythm. My LifeVest was uncomfortable to wear but comforting knowing that it would save my life.
Once I got the appointment with my official cardiologist, he ran tests to determine how much of a risk I was. That’s when I was officially diagnosed with PPCM. My EF (heart function) was 19% at diagnosis.
For 6 months I wore the LifeVest and took several daily medications, including Entresto, Spirolactoline, and Metoprolol. Eventually, I had a cardiac MRI that found my EF to be 54%! I had recovered from PPCM. That was the most incredible feeling…just knowing that I was fortunate enough to be one of the few to recover so quickly.
I will always have PPCM and I will continue to raise awareness. Prior to my diagnosis, I didn’t know this condition even existed! I’m very thankful to be alive and healthy. Unfortunately, it leaves emotional scars and anxiety that all of us with this diagnosis have to work through. Several doctors telling me that if I had gone to sleep that night I probably wouldn’t have woken up will stick with me for the rest of my life.
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