“So this is where my story takes an interesting turn,” Ashley joked as she shared her story with 1heart2lives. “And there is no logical, scientific explanation for what happened. Because it didn’t turn out the way anyone thought it would.”
Ashley’s life changed forever during a chaotic Holiday season two years ago. The 33-year-old mother of four daughters had just given birth seven months earlier, and a severe illness was sweeping through their household. “We just kept passing it around to each other, just as one of us got well, we’d get sick again.” Ashley made a point of getting her children to the doctor, but like many of us, put her own health on the backburner to focus on the wellbeing of her family instead. “I just kept thinking I’ll get better, I just need to rest. I kept saying this even as my symptoms were getting worse.” Ashley was young, had a history of relatively healthy habits, and no severe health conditions she was aware of. But that was about to change.
As the family was preparing to fly from Washington to Michigan for the Christmas holiday to visit Ashley’s in-laws, her illness continued to worsen. Ashley decided to see her doctor before the trip, in the hopes of possibly being put on antibiotics to combat what she thought was the same illness as her daughters’. But her symptoms were a bit different: “In hindsight I had every symptom of heart failure, like exhaustion, being super bloated…but I chalked it up to the fact that I’d been eating all this garbage I don’t normally eat. I was having a hard time breathing, my hands and feet continued to swell, but I just thought ‘Oh I have my grandma’s hands, my mom’s hands.’ Even though I was nursing I was also rapidly gaining weight…but for every symptom I had a way to explain it, and I didn’t know what the symptoms were pointing to.”
When Ashley’s family doctor gave her a physical, she heard something off in Ashley’s chest. “Are you having a hard time breathing?” She asked. At that time Ashley’s breathing wasn’t a significant issue, she was just not feeling well. The doctor again listened and asked, “Does it hurt when you lie down?” Again, Ashley didn’t realize the significance of the question, and because at that point she wasn’t experiencing the symptom, she told her doctor she wasn’t having trouble lying down. But as her illness escalated, new symptoms showed up. That night Ashley struggled to lie down comfortably; she decided to call her doctor the next day and find out why she was asking those specific questions during her appointment. But caught up in the hustle and bustle of getting ready for a long trip, she didn’t call her doctor.
“At this point I was on antibiotics from my first appointment, but when I woke up the next morning I didn’t look like myself. I was incredibly swollen, like I was wearing a face mask of myself. I still kept thinking that I would get better, I just needed to rest.” The family had to drive two hours from their home to the airport in Seattle; Ashley struggled to breathe during the entire drive. She couldn’t even sit comfortably; when they went out to eat that evening, she stayed standing next to the table while in the restaurant with her family. At this point she also hadn’t had much to eat or drink in last few days. “As I stood there I thought ‘Tomorrow on our flight, I hope something goes wrong with the airplane so we can have oxygen masks, because that would feel so good.’” Alarmed by her unusual thoughts, Ashley told her husband “I think I need to go to urgent care.”
Urgent care did X-rays, gave Ashely a steroid breathing treatment and an inhaler. When they did a flu swab, she recalls “It felt like being drowned, it was so uncomfortable to lie down. I was very panicky.” Urgent care misdiagnosed her with pneumonia, and gave her stronger antibiotics than what she’d previously been taking. The next day they flew to Michigan, and Ashley was struggling. “I was completely out of energy; I couldn’t even carry my bag or keep up with my husband who had all four kids and everyone’s bags. By the time we got to the house I just apologized for being so sick, and then spent next day in bed just sleeping.”
That evening Ashley woke up and couldn’t breathe, or call for help, or walk. She panicked. One of the dogs wandered into her room, and Ashley’s mother-in-law came in to get him. Ashley had to hit the nightstand to get mother-in-law’s attention because she couldn’t speak. “My mother-in-law is a trained nurse, but we still thought it was pneumonia, so she helped me downstairs to get fresh air and my steroid inhaler. She and my husband insisted I got to the ER, even though I resisted. But I thought if I just got some IV fluid I’d feel much better.”
Once at the ER, the doctor who examined Ashley immediately told her she needed to be admitted into hospital. He said, “I think you’re really sick.” Ashley was still resistant, but the doctor told her, “I think deep down you know you’re very, very sick.” At this point the doctor had not yet discussed what he thought was wrong, but he requested a series of tests to confirm his suspicions: heart failure.
“I thought he was crazy! Heart failure is an old man’s disease. I even told him not to call in the cardiologist because I was so sure he was wrong. I wasn’t even having chest pains or anything like that.” But a blood test revealed the doctor’s suspicions were spot on. When the heart is failing, it produces a hormone called BNP; normal BNP ranges are between 0-100. Ashley’s levels were at 22,000. She was in severe congestive heart failure. An ejection fraction measurement by an echotech confirmed the diagnosis. The cardiologist explained to Ashley that her heart was operating at so low a capacity, it was as low as it could get without stopping. While acute congestive heart failure can happen in post-partum women, Ashley’s doctors were mostly in agreement that her cause was most likely attributed to a viral infection.
Ashley was rushed to the ICU, but she doesn’t remember much of that week as she was in and out of consciousness. Despite being in the hospital, she had to wear a defibrillator vest because, as a nurse put it, “We know you’re in the ICU, but if you have an event we won’t make it fast enough to save you.” The cardiac team explained to Ashley that her left ventricle was damaged beyond repair and she needed a new heart. But she couldn’t even be put on the donor list because she was too ill to go through the surgery. Ashley’s family had to prepare for the worst: she wasn’t going to make it out of the hospital.
The hospital made arrangements for her to be able to say goodbye to her children (who up until now had not been able to see their mother), but Ashley wondered, “How do you say goodbye to your babies?”
There isn’t a logical way to explain what happened next. The day after Ashley’s kids said goodbye to their mother and flew home to Washington, Ashley’s church held a big prayer session amongst church members, friends, and family. The following morning Ashley’s cardiologist came in to check on her. “He took one look at me and said ‘you don’t look the same. You don’t look like [someone in severe heart failure].” He ordered another echocardiogram, from the same echotech as the first time. “I could tell just by looking at her face that things were better. The echotech told me my numbers had gone up in such a way that I could be released from the hospital and into the care of a heart failure specialty team.” Ashley’s doctors acknowledged that what happened was extremely rare. So rare in fact, that her story spread and cardiologists from all over the region traveled to see her and witness this case of “the young woman who jumped the ejection faction” for themselves.
“This is how one doctor put it to me: ‘If you spend all day every day looking at horses, then it would be exciting to see a zebra. Well, Ashley, you are a unicorn!’” Her left ventricle was healed enough to go home. Ashley was going to live, without a transplant, without surgery, or any additional devices assisting her heart.
It’s been two years, and Ashley has worked through cardiac rehabilitation, excruciating physical therapy, the emotional stress of being far from her family as she worked with her heart team in Salt Lake City, and the uncertainty of what comes next with her new reality. “I have survivor’s guilt because I know this story doesn’t go this way for the majority of people.” She tracks her journey through her Instagram account, and shares often to raise awareness for other young people who may think this kind of thing could never happen to them.
“I get asked all the time if I was a drug user, because they’re more common heart failure patients, but I have never even smoked. No one ever thinks something like this will happen to them. Both the diagnosis and the outcome were extraordinary for me! I didn’t know the signs and I made it in and out of seeing two separate doctors that didn’t put everything together. Even when given the diagnosis and being in the ICU I couldn’t believe that this happened to me! Know the signs and symptoms of heart disease and never forget, as long as you have a heart, you are not exempt!”
Thousands of people are currently on the donor list to receive a life-saving organ. If you’d like to register as an organ donor, please click here.