Over the course of collecting stories for 1heart2lives, one thing has become apparently clear: your health outcomes improve dramatically if you are your own best advocate for your health. This starts early, with owning the choices you make about your health, and it connects to how you speak with your doctors and make sure you’re being heard. Because the truth is, medical professionals are humans too, and because they’re not experiencing what you are, they may not fully understand what you need right away. Dante’s story is a great example of how important it is to not only advocate for your health before an event even occurs, but to keep working to make sure the medical staff understands what you’re experiencing. In fact, it was his attitude of persistence and self-advocacy that saved his life.

advocate-for-health

Before his health emergency, Dante worked out frequently, ate healthy, and made a point of taking care of himself and paying attention to his body.

May 15, 2015, started like any other day: Dante got up and begin getting ready to go on an 8-mile bike ride (part of a frequent routine that kept him in shape), and he planned on spending the rest of the day enjoying his daughter’s birthday. The first sign that something wasn’t right came before he even left the house. “I sat down, then somehow woke up to find two hours had passed. I thought I must be coming down with something, but didn’t think much beyond that.” He still went out for his bike ride, but something was definitely amiss. “It was like I had never been on a bike before. I couldn’t maintain a rhythm, and even though I was chugging Gatorade and water, I was still so thirsty.” After struggling to only make it around the corner from his house, Dante decided to head home and get more rest.

Once home, he passed out again for another 45 minutes. “I couldn’t believe how tired I was. I asked my wife to take our daughters because I just needed to sleep. I fell asleep again, and didn’t wake up for another six hours! I missed the entire day.” When Dante woke up again, he was extremely hungry. “I started eating everything in sight. My body just had to have something. And I was still drinking a ton of Gatorade and water.” A friend came over later in the evening, and looked closely at Dante. “He said, ‘You look like death. Go and lie down and get some rest.’” From there, Dante slept another ten hours. “I’m the kind of person who functions well after 4-6 hours of sleep, so sleeping for 18 hours in one day is pretty crazy.”

The next day Dante felt much better, and didn’t seem as tired. He decided to drive his oldest daughter back to Columbus to see her mother. They only made it halfway before he had to stop and rest. “I took a nap in the car for another hour. I thought I must be coming down with the flu.” And despite the high quantity of fluids he was consuming, he was still incredibly thirsty. “I’m used to drinking a gallon of water a day, so I couldn’t figure out why I was still so thirsty.”

Once he got back home, Dante’s wife noticed how poorly he looked, and didn’t think he should be alone at that point. Dante went back to bed, then slept through the afternoon. When he woke up, he knew that something was very wrong and it was time to go to the doctor.

“We ended up going to the ER that afternoon, about 4:00 after the kids got home from school. In triage I tried to explain to them what was happening. By then I had started blacking out, and I was missing memories and pieces of information. For instance, I don’t recall how we got there and I don’t remember much of being in the ER. The doctor thought I just had the flu, even though I didn’t have any other flu symptoms. But they discharged me anyway.” The ER advised Dante to return if he developed any other symptoms, but otherwise maintained he had a relatively common virus.

That night, as if on cue, new symptoms developed; Dante and his family became increasingly concerned about his health. “I started having stomach problems, including vomiting, and even though I was drinking gallons of fluids, I wasn’t urinating. But I felt like I couldn’t get enough fluids.” The next day Dante told his wife he needed to go back to the hospital. Intuitively he knew something was wrong, and it wasn’t the flu. “I reached a point where I couldn’t function. I couldn’t stand up, or walk, and I kept blacking out. One minute I was trying to get down the stairs, the next minute I was almost at the hospital and I don’t know how I got there.”

Instead of going back to the same ER, Dante’s wife took him to the Cleveland Clinic out of concern that the wait at the ER would be too long for him. He couldn’t walk, the blood vessels in his eyes were enlarged, and despite the copious amounts of fluids he was still drinking, he looked dehydrated. The Clinic took a urine sample, and immediately became concerned. “How long has it been like this?” asked the doctor. There was blood in Dante’s urine, which triggered an automatic quarantine until they could figure out what was going on with him.

advocate-for-health

Dante in the hospital, experiencing congestive heart failure.

When the doctors and nurses returned, they were wearing haz-mat suits. Dante was strapped to a bed, blood samples were taken, and they made plans to transport him to a different hospital that could better treat whatever was going on. Dante’s wife called his family to let them know what was happening, and they immediately came to the hospital even though they weren’t allowed in his room. “My mom just came right in though; she was going through breast cancer and I think she felt like if that wasn’t going to get her, then she wasn’t going to be afraid of this either.”

No one knew what was going on, or what to do. “I knew I was sick, but I if it was a virus, I couldn’t figure out where I would’ve gotten it from. I work in hotels, and I come across people all the time, but we have minimal contact and I don’t recall meeting anyone who was sick. And no one else in my family was sick, even though I’d been in contact with all of them.” In fact, Dante is normally the member of the family who never gets sick. “I’m the one who nurses everyone else back to health!”

Once he was transported to the hospital and isolated in his own room, the doctors began running more tests on Dante to figure out what was happening. Initially they gave him the standard advice for someone experiencing a health crisis: “Take care of yourself, get more sleep, exercise, drink lots of water, etc.” But this time the advice was off because Dante had been working out consistently, eating healthy, and drinking plenty of water. Later, doctors would acknowledge that these habits are most likely what saved his life.

As he waited in the hospital room, Dante’s symptoms escalated further. “My chest was aching at this point, really bad, and I had developed a crazy cough where I couldn’t breathe.” Beyond that, even after the coughing stopped, it took Dante a long time to catch his breath. The doctor and nurse tried inducing the cough, though they assumed it was simply an anxiety attack. “I do not get anxiety attacks, and I knew this was something more. But my cough usually happened when they were out of the room. I knew they had to be there to see it.” Not long after the doctor and nurses left Dante’s room and closed the door, the coughing returned and it was severe. “I couldn’t breathe, and no one was responding to the call button. Using my foot I pulled over the table with my phone on it, and sent a mass text to as many people as I could asking them to find someone right away.” A nurse finally responded, and told Dante he was experiencing anxiety. But he’d struggled to breathe for so long, that he started to code. Dante went into a coma for the next several hours.

“I woke up with tubes down my throat and hooked up to several machines. I did my best to listen because I couldn’t talk and I wanted to know what was going on.” At that point the doctors thought he had a severe case of pneumonia, and they were waiting for blood work to come back to get more information about what to do. They removed tube from Dante’s throat, and he immediately started having trouble breathing again. The doctors didn’t realize he was in congestive heart failure until they performed an MRI later that night. As a result, Dante was also going into renal and respiratory failure.

The next several days were a blur. “They gave me morphine to help with the pain and anxiety, but it made me have strange dreams. When I was on the drug, I talked quite a bit about traveling the world and I had dreams I was in places like Italy and Egypt. My wife was really worried about me!” Dante was also in and out of consciousness during this time, day after day, and with no definite diagnosis. Doctors and nurses wearing haz-mat suits came and went, but there were still no answers. And he was still too weak to even stand up on his own, much less do everyday things like feed himself or get himself to the bathroom. “I didn’t know if I was going to see the next day. No one did.”

Lacking a definite diagnosis, and now racing against the clock, the doctors made a decision. “We’re going to focus on your heart,” they told him. From there Dante went through a series of procedures to get his heart to function properly. He could hear the prayers and tears of the family and friends in the waiting room; he focused on his breath and his heartbeat, one moment at a time. Eventually the treatments started working, and he was moved out of the ICU.

advocate-for-your-own-health

After two weeks in the hospital, Dante lost over 30lbs of muscle mass. This is him after his release, working on getting his health back on track.

Dante lost roughly 30lbs of muscle mass over only two weeks. He couldn’t eat solid food, move his body with his own energy, or stay awake for very long. “I didn’t even recognize myself,” he said. Before he was ill, Dante was a big guy who often got mistaken for an NFL player when he did events in Cleveland. “I went from running for miles to not even being able to walk from one side of my hospital room to another.” When he was finally strong enough to go home, Dante knew he needed to work to understand what had happened, and to keep himself healthy enough to prevent a recurrence.

Dante was on strict dietary restrictions (which didn’t bother him), a slew of medications (which made him feel tired and out of it), and cardiac therapy where he was by far the youngest member of the class. “All of these seniors in the cardiac class were trying to figure out what happened to me. They all had a history of heart disease, smoking, poor diets, etc. But not me. They didn’t understand why I was there.” Dante’s doctors still didn’t know what had caused his illness, so they attributed it to a virus. But they did know for sure that his prior health habits were a key factor in his survival. As such, Dante was determined to regain his health to prevent worsening whatever had caused his congestive heart failure in the first place.

“I was always obsessed with food prep and exercise, but now I am obsessed with everything that goes into my body. I read labels, do research, and eliminate things that I think could cause a problem.” Dante still needed help doing everyday things like get up and down the stairs. So he focused his energy on cleaning up his diet and healing. “I became a vegan (my wife lasted only one day!), cut out all of the supplements I’d been taking, quit drinking, and more.” He was still dealing with muscle and joint pain, shortness of breath, and low energy. But little by little he was making progress. Dante could return to work in a limited role and with someone to assist him, and slowly began working back towards a normal life.

Dante spent the next couple of years recovering and rebuilding his life. But this is not where his story ends. Not that long ago his blood pressure started “going crazy,” and he felt burning in his nose and eyes as well as pain in chest, numbness in his fingers, right arm, and elbow. Then he developed tingling in his left hand and swelling of his fingers. He also started blacking out again, passing out unexpectedly and sleeping for hours, and feeling like his heart was going to “jump out of [his] chest.” He has been in and out of urgent care, switched to a new cardiologist with a more holistic approach, and is now wearing a heart monitor that records data about his heart’s activity. Through it all he maintains a positive attitude, and continues to advocate for his health.

“Do not take it lightly if you start to feel a very different way than how you used to. It can be that serious, because we never know. I would rather have another hospital bill than a funeral.” Dante wasn’t experiencing normal symptoms, and it was his persistence in finding the right doctors who would listen, to maintaining excellent health habits, to fighting to be heard that saved his life.

Related: The Unicorn: Ashley’s Story, How to Find a Great Doctor