I Was Diagnosed With Heart Failure at 28. These Are the S...

By Gerry Langan, as told to NewsweekShareNewsweek is a Trust Project member

After having twins in 2017, I had a very traumatic postpartum period. My body never rebounded. I was exhausted. My husband was in the military at the time, so he was often away while I was home taking care of two newborn babies.

When the boys were about 6 months old, we moved from North Carolina to Colorado for his job. When we got there, I had so much altitude sickness. I had never been to the Rocky Mountains before, so I didn’t know what to expect. I’d lived at sea level all my life. I was having a hard time breathing and I was super tired, which isn’t out of the norm when you have twin newborns. Carrying the babies in their car seats from our car to the front door, I’d have to stop halfway and set them down. Walking around town, even with my husband pushing the stroller, I’d have to stop every few feet to take a breath. But at that point, I hadn’t worked out in a long time. I thought I was just out of shape, and still getting used to the altitude.

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Then I started gaining weight. In the summer of 2018, I gained about 25 pounds in a couple weeks. My first thought was, “I’m pregnant.” It all made sense: I was tired; I was having a hard time breathing; all the weight I’d gained was in my stomach. I think I took eight pregnancy tests. They were all negative. Shortly after that, we flew back to North Carolina for a wedding. When I got off the plane, my ankles were the size of my thighs. But cankles are also a sign of pregnancy, right? I was sure that’s what it was. I made an appointment to go to the doctor when we got home from the wedding. They ran some bloodwork and said they’d get back to me in a few days, but before the results came back, I was already in the emergency room.

That night in bed, I wasn’t able to sleep because I couldn’t lay flat; it was hard to breathe. When I woke up in the morning, I couldn’t walk—my legs were so swollen. I looked at my husband and said, “I need to go to the hospital.” I waddled into the ER and told the receptionist my symptoms. There happened to be a nurse behind the counter that morning. She listened to me and said, “Have you ever been diagnosed with heart failure?” I said, “No way—I’m 28 years old.”

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Many tests and doctors later, I was told I was in heart failure. They drained two 2-liter bottles of fluid from my stomach—my weight gain had been from fluid retention. I was in the hospital for 10 days before doctors officially diagnosed me with pulmonary arterial hypertension, a rare lung disease that can cause heart failure if left untreated. It was zero-to-100 after that. At a specialist clinic, it was determined my case was severe, not mild. A doctor told me, “If we don’t start treatment immediately, you’re going to die.” I lost it. I started crying. My husband rushed to the hospital. Another doctor saw how distraught I was and said, “We’ve got this. We’re going to figure this out.” He prayed over me, and it was so moving—it helped my mental state a lot. They started me on a medical pump that delivered medication to my heart through a central line, and I stayed there for two weeks learning how to use it.

A week after I was discharged, we moved to Alabama—yes, our life is crazy. For a while, my condition was touch-and-go. I’ve had two line infections, and since the line goes directly to my heart, infections are very serious. At one point, I got sepsis and was back in the hospital for two weeks. I apparently have very sensitive skin, and it wasn’t taking well to the adhesives used to hold the line down. I switched to an oral medication, but then I ended up back in heart failure. So I’m on a new pump now, and I’m part of a clinical trial testing an injectable medication. It’s been a lot of trial-and-error figuring out what works best for me, but I’m stable right now. I’ll be on medication for the rest of my life. There is no cure for pulmonary arterial hypertension.

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This diagnosis has affected our entire family. My husband, who’s since left the military, has had to become the primary caregiver. Our kids are 8 now, and they have school and sports. A lot of that work falls on Jason. I’m always at doctor’s appointments, and there are times I need to rest or I’m in a lot of pain. The boys want to wrestle and jump around, and they’ve had to learn from a very young age that they can’t do that with me, because they could hit my site, where my medication is infusing. We live in Florida now, so there’s a lot of swimming and boating. I can’t just jump in the water with them. It’s a lot of work for me to swim—I have to be waterproofed. Our whole family has had to adjust.

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At first, I started sharing my story online so family and friends knew what was happening. But shortly after my diagnosis, I met a woman around my age, with kids the same ages as mine, whose husband was also in the military, and who also had pulmonary arterial hypertension. At the time, when I googled my disease, I didn’t see myself. But she helped me see beyond the four walls of the hospital room. I thought, “If she can look normal and live a normal life with this, then I can, too.” She motivated me. I thought, “If I can be that person for someone else, then I will be.”

A while after, I made this cringey reel on Instagram about the symptoms I’d missed before heart failure. Somebody who was experiencing similar symptoms saw it, went to the hospital and was diagnosed with pulmonary arterial hypertension, just like me. A few years ago, I got to meet her in person. She cried when we saw each other; it was a really cool moment. It was so moving. That’s when I realized, “What I’m doing—regardless of how cringey it is—really does matter.” That’s what motivates me to share my story.

This interview has been edited and condensed.

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