Jen's PPCM Journey

When we found out I was expecting our second child I was thrilled! But, also nervous - We already had a child that I loved beyond measure. How could my heart possibly make room for more love?  

My first pregnancy in 2013 was what I characterized as difficult, as I dealt with extreme nausea and vomiting up to delivery, blood pressure that was all over the place, and 70 pounds of weight gain. Ultimately after 26 hours of labor, I delivered via emergency c-section due to pre-eclampsia. It took me about 4 years before I decided I was ready to brave pregnancy again.  In 2018 I had sinus surgery. In the recovery room, my ENT asked if I had a history of heart problems. He stated my heart rate kept spiking, so much so that he decided to only perform one of three treatments I was supposed to have. Knowing we were going to start trying to conceive, I asked my primary care physician to refer me for cardiology testing. I had an echocardiogram and a stress test completed and was told the results were normal, aside from evidence of a left bundle branch blockage which the cardiologist indicated was "nothing to worry about." I went a step further and sought a second opinion of the test results from a heart institute in a nearby major city. Once again, received the all clear to proceed with a second pregnancy.  

In November 2018 we found out we were expecting. I felt confident in my choice of provider. They started baseline testing to diligently track any start of pre-eclampsia. Like my first pregnancy, at the end of the second trimester, beginning of the third, I began packing on the pounds. I attributed it to my major carb cravings. I was working full-time in an office setting but it is very fast paced and stressful. I was beyond exhausted. Nauseatingly tired. My heart constantly felt like it was racing, but I have a history of anxiety and I was still within 6 months of grieving the sudden loss of my dad.  

At 31 weeks I went to a baby shower for a friend on a Sunday. I started having trouble breathing - I had forgotten to take my allergy medication knowing she had a cat! I started using my inhaler rather frequently but was not getting any relief. On Tuesday, I was feeling contractions. I was referred to labor and delivery for monitoring. My heart rate was high, but I was anxious and had been puffing on albuterol more than I probably should have. After a couple of hours, I was cleared to go home with orders to drink plenty of fluids to help with the contractions and to help with my heart rate in case I was dehydrated.  

The next day at work I could hardly finish a sentence without coughing. I had this constant urge to clear my throat and felt a heaviness in my chest, much like when I had bronchitis in the past. On Friday, I was on my feet a lot at the office, so when my feet and ankles had ballooned, it didn't seem out of the ordinary. I was so relieved to get home for the weekend. My husband told me to go lie down and prop my feet up. But I couldn't. Every time I tried to lay flat, I was gasping for air. I spent the night sitting upright, constantly using my inhaler hoping for relief.  

Saturday, June 8, 2019 I went to urgent care and requested a breathing treatment for my "bad asthma flareup." I kissed my son goodbye and said, "I'll be back soon, I'm just going to get some medicine quickly." But I didn't come back - not for 20 days.  

At the start of the examination, my heart rate was in the 150s. I had been tracking my blood pressure my whole pregnancy and never gave a thought to my resting heart rates that were steadily increasing into the 110s and 120s. I was pregnant and anxious! I kept telling the physician, "I really just think I need a breathing treatment." They did an EKG. The physician came back in and said I had to immediately get to the ER.  

At the ER they evaluated me for potential DVT (Deep vein thrombosis) and PE (pulmonary embolism). My scan for PE revealed fluid around my lungs. At this point I was nearly delirious because I was so tired. They did a bedside echocardiogram. The next thing I knew, I was being transported to the higher-level hospital across the street. Upon arrival, I was greeted by a full cardiology team and full OB team. Everyone was in scrubs. They were trying various maneuvers to get my heart rate down, with no success. Suddenly, pads were being placed on my chest, my husband was being rushed out of the room and I was told "We need to reset your heart. You're going to feel it stop for a couple of seconds." Making the situation all the more terrifying, this was happening nearly a year to the day that I unexpectedly lost my dad to a heart attack. The last image of him, shirtless with the same pads they were now placing on me. Based on the imaging and a simple blood test which measures BNP, I was diagnosed with Peripartum Cardiomyopathy (PPCM) with an EF (Ejection Fraction) of 19%.    

I was admitted to the cardiac ICU. Thanks to the amazing team, I was stabilized after a week and was able to move to the Labor and Delivery unit to remain on bedrest until our goal of 34 weeks. I had some setbacks, but ultimately delivered a healthy baby boy at 34 weeks. I was sent to recover on a cardiac step-down floor.  

Today, I am hopeful for recovery. I am under close observation by the Advanced Heart Failure clinic at the hospital where I delivered. I feel very fortunate that I was transferred to hospital that had providers knowledgeable about PPCM. I will have another echo soon. I've been working my way up to max dose of Entresto and Metoprolol. The goal is to give my body 6 months on the meds at max tolerated dosing before retesting with an Echo. The results of the new imaging will determine if I will need an ICD. I will be undergoing genetic testing with the goal of better tailoring my future plan of care, as well as helping doctors learn more about PPCM. I am vocal about my experience and what I have learned throughout my journey with the hope that in time, BNP testing will become routine and more mothers will be saved.