What It’s Like to Live With Heart Failure

By James L. Young II, as told to Danny Bonvissuto

I was just your classic case of Mr. Unhealthy. I went to fast-food places on a daily basis, drank soda — or pop, as we say in Michigan — and too much beer. I had a sit-down job, didn’t work out, and smoked on top of all that.

In a lot of heart failure stories, people talk about eating bad, smoking, and not working out, but seldom do they get to the underlying reason. Why do they do that to themselves?

I had to face myself and figure out why I was doing those things to myself. I realized I was depressed and used the fast food, smoking, and drinking as Band-Aids. I had to deal with what was eating me, instead of what I was eating.

I did some long, hard thinking and realized I didn’t want to die. I haven’t gone there or done that. But I had a small window to get my act together.

It’s Just Allergies

I was gaining weight and becoming more and more short of breath when I’d casually walk up stairs. I had a lot of gout in my feet, which came from drinking excessive amounts of beer.

I ignored a lot of those things and diagnosed myself: All my discomfort, pain, and not being able to sleep at night? I’d wave it off as allergies, no matter what season it was.

One winter, we were getting dumped with snow here in Michigan, and I pulled the snowblower out. I noticed I was coughing a lot — coughing up phlegm and spitting it out. Then I noticed there was a trail of blood.

I said, “Well, that’s allergies.” So I’d get cough syrup, which didn’t do anything. I continued to ignore it until I got so bad physically that my family sat me down and said, “You look really bad and need to go to the doctor.”

The Wake-Up Call

I was 40 years old and about 280 pounds. I’d begun seeing a primary care physician and was diagnosed with congestive heart failure, systolic heart failure, cardiac myopathy, and chronic kidney disease.

I was so heavily medicated that driving became difficult and dangerous. I’d fall asleep at traffic lights, so I’d have to have someone drive me to appointments.

At one appointment, I just couldn’t get settled in the waiting room and felt warm all over. I excused myself and walked towards the parking lot where, unbeknownst to me, I looked towards the sky and began taking deep breaths. My mother, who drove me to the appointment, had my doctor and some of her staff rush into the parking lot to tend to me. They sent me to the emergency room.

After I was admitted and they got me into a room, the doctor came in and said, “Before we get into the details of why you’re here, I just want to know how you got here.”

I said, “Like the mode of transportation?”

He said, “The top number of your blood pressure is over 200, and the bottom number is lower than 200. You’re a walking stroke.

“If you’d waited a week, we’d have a different conversation,” he said. “It’d be about you, past tense.”

That’s when things began to sink in for me.

How I Turned It Around

I minimized my fast-food intake and added more vegetables to my diet. Instead of going to the bar and hanging out with the fellas, I’d go to this place in Detroit called The Water Station, where I’d learn about proper hydration and the negatives of dehydration. I also started walking, jogging, and running at a local high school track every day.

One morning, I faced the mirror and realized I didn’t have a beer gut anymore. I weighed around 195.

My primary care physician was amazed. She said, “Now that you’re out of the storm, so to speak, I have to admit I didn’t think you were going to make it. Most of my patients at the point you were don’t get themselves out of it.”

The Power of Choices

I can see how some heart patients can’t see a way out. You have to do a major shift to what’s familiar. It’s like Mars, and they can’t see themselves existing in that place.

My father passed away in 2014 of congestive heart failure and diabetic complications.

In my transitional phase from diagnosis to getting my health together, my dad and I would have conversations, and he’d admit things to me. He’d say, “I’ve seen you change so much, eating better, doing better. And obviously, I didn’t.”

He said one last thing to me: “In life, we all make choices and decisions, and it places us at different points in life. This is where I am in mine, based on the decisions I’ve made.”

Why Outreach Is Important to Me

From that point on, I decided to turn it up a notch, from sharing my journey on Facebook to advocacy work. All around me there are large communities of people walking around with untreated — and oftentimes largely preventable — conditions. They just need to be health literate.

A lot of people go into depression when they’re diagnosed. That emotion is real, but you don’t have to stay there. You can pick yourself up and give yourself another chance.

I linked up with the American Heart Association as a national heart failure ambassador, patient advocate, and lay stakeholder in science. It brings me fulfillment and contentment and helps me manage hypertension.

The most important part to me is the community interaction. I don’t just sit behind a table and hand out flyers. I share my story with whoever will listen.

You only have one heart, but I’ve noticed that heart disease doesn’t have the same sense of urgency in our society as other conditions. I’ve met people who’ve had heart attacks, strokes, congestive heart failure, and they’ll go right back to what they were doing in the first place. It doesn’t click.

People tell me, “Well, I like my Big Macs,” but the body can only handle so much of that. All the sodium, fat, and cholesterol are just ingredients for your heart to weaken and not work properly.

So many people don’t realize that heart failure isn’t a death sentence; it’s an opportunity to change the trajectory of your health.

How I Thrive Today

I joke that I just go outside, pluck up some lawn, and sauté it in a skillet with olive oil.

My breakfast includes kale or spinach. People say, “Who eats kale for breakfast?” I do, because I’m putting some green leafy vegetables in my body that contain vitamins and nutrients. And I drink water. I don’t think about it anymore — it’s just part of me. It’s become my habit in the same way that eating 10 pieces of bacon and eggs fried in bacon grease was my habit.

Every week, I go to the dollar store and buy 3 to 4 gallons of water. I don’t drink a whole gallon a day, but I drink enough water.

For lunch, I eat a salad every day and drink more water.

Dinner is baked chicken or fish. The whole going-through-the-drive-thru idea has almost totally been cut out of my life.

I’ve done three half-marathons successfully. I’ve never done a full marathon because I’m only half-crazy.

I got into cycling last year. It’s a great way to practice social distancing and still get exercise in. And it’s more interesting to me than going to the track and running around in circles.

I’m down from 11 medications a day to one for blood pressure.

Before he died, my father listed everyone in my family, their age at death, and what they died from. When my doctor saw that, she decided to keep me on a low-dosage medication to offset my genetic connection to heart issues.

I have as much positivity and encouragement around me as I can control. I reconnected with DJing, something I loved to do years ago. I went back to school to finish my bachelor’s degree in business and plan to get my master’s degree in public health.

I make conscious decisions now: This is how I want my life. If something affects my happiness, it affects my heath. I choose to be happy.

Ghosts of the Past

The high school track where I first started exercising was near the liquor store I used to visit every night after work to stock up on my favorite alcoholic beverage. One day, I forgot my water and walked into the store. The owner looked like he’d seen a ghost and said, “You used to come in here a lot.”

As I told him my story, he put my usual alcoholic beverage and cigarettes on the counter.

I said, “No, I don’t want that.”

He said, “I’m sorry, I was listening to you talk, but I associate you with those things.”

Then he said, “I’m gong to tell you something I never tell customers: You see this Plexiglas? What purpose to do you think it serves?”

I said, “Protect you from a knucklehead with a sawed-off [shotgun]?”

“To protect the liquor,” he said. “I’d never tell a customer not to drink. I’m in business to make money. But you’ve made my day. I’m proud of you and happy you’re still around. You look alive.”

“I feel alive,” I told him. “I feel good.”