I was diagnosed with heart failure at 26. Here’s the first symptom I experienced

Tiara Johnson, 32, was diagnosed with heart failure when she was just 26 years old. At first, her doctors wrote off her symptoms and told her it was nothing to worry about.

Those symptoms—high blood pressure, shortness of breath, and fatigue—set in toward the end of her pregnancy. She was put on blood pressure medication and sent home after her daughter was born. When she went back to the hospital with persistent symptoms, she was told they were normal for someone who was postpartum. So Johnson just kept pushing through, hoping things would improve with time.

Instead, everything just got worse. After passing out in the parking lot at work and being sent to the ER, she learned the true cause of her symptoms: end-stage congestive heart failure. Here’s her story, as told to health writer Korin Miller.

It all started at the end of my pregnancy with my second child. I had a completely normal experience—until the last week. My blood pressure skyrocketed out of nowhere and my fingers became so puffy that I couldn’t wear my wedding ring. I was diagnosed with preeclampsia, a serious complication of pregnancy that causes high blood pressure and signs of liver or kidney damage; I was given medication to control hypertension—it didn’t work. A few days later, my doctor decided to induce me, but during labor I felt like something still wasn’t right and I couldn’t catch my breath properly. I expressed my concerns to the medical staff, but I was repeatedly told that everything was fine. So I assumed I was just overreacting, even though I truly felt like something was off.

I had my daughter on July 31, 2015. When we went home, I still felt like I couldn’t breathe and it didn’t get better when I laid down or sat up. A few days later, I was in the shower and I felt like I was drowning, so I went back to the hospital. There, I was told I was fine and that this was a normal feeling after you have a baby due to fluid buildup in the body.

I felt a little bit better when I went home, but I kept dealing with shortness of breath. I couldn’t lift my baby, I felt exhausted all the time, and I was sleeping a lot. I couldn’t walk for any long periods of time. But, because I was told that this was normal, I just dealt with it.

Things changed on October 9, 2015. I passed out in the parking lot where I worked and was sent in an ambulance to a different hospital’s ER. There, I was given a series of tests and finally found out why I had been feeling unwell for the past three months: I had congestive heart failure and it was end-stage, meaning my heart was barely functioning. In fact, it was functioning at just 10% of its normal capacity.

The official diagnosis was peripartum cardiomyopathy, which is a form of heart failure that can develop during the last month of pregnancy or within the first five months after giving birth.