"When Your Heart Fails You" - An interesting, but sad & hopeful article from the New York Times

• by MartyP
• 2018-08-30 10:29:07
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By Marla Cone - Aug. 23, 2018 - Marla Cone is the science editor at Reveal from The Center for Investigative Reporting.

They control my heart from a laptop. So why do I feel so helpless?

My heart is broken. But not the way you think I mean. It’s actually broken. Doctors call it heart failure, but since I’m not the type of person who likes to fail at anything, I’ll just say that it is broken. It’s permanent, though, and that’s the hardest thing for me to accept. My heart can no longer do the things it was born to do, and it never will again.

Back in September, I had a perfectly healthy heart. Nothing in the least bit wrong with it. No heart disease, no clogged arteries, not even high blood pressure. My heart was minding its own business, doing its job 24-7.

Then something happened. My husband and I had just returned to our home in California, after taking our son to start his junior year in college in Oregon. My husband caught a cold. Then I caught it. No big deal.

It started out like any virus. A slight fever for a day. But then I got headaches, body aches, nausea. I figured it was the flu, so I went to the doctor. He thought it might be pneumonia, so I got an antibiotic shot and pills, but I soon got worse. I was short of breath just climbing up a few stairs. My doctor said I should go to the hospital emergency room and get fluids. So I dragged myself there, thinking it was quite silly. I knew what to do with the flu. You just rest and wait it out.

“Are you a marathon runner?” the doctor asked at the E.R.

I laughed and said no.

“Well, your heart rate is very, very low.”

I tried to process this. Wait, I have the flu. Maybe pneumonia. What does my heart have to do with anything? A cardiology team gathered.

That night, my pulse suddenly dropped so low — to a pathetic 28 beats per minute despite three medications to keep it pumping — that nurses rushed in with those paddles. My heart, out of the blue, couldn’t figure out how to beat at the proper rate anymore. Something had suddenly disabled its electrical system, which is what sends impulses to the heart muscle.

When my heart failed, the lining of my lungs filled up with fluids. In the first nine days while hospitalized, I gained an astonishing 20 pounds of fluid. Doctors went in and drained nearly two liters (yes, almost the equivalent of one of those giant plastic bottles of soda) from the lining. It was squashing my lungs, leaving me struggling to breathe. I felt as if I were drowning. I went home after two weeks in intensive care with a pacemaker (permanent) and an oxygen tank (temporary).

My heart was broken.

The culprit turned out to be a virus. Not some mysterious, exotic virus. A virus that causes the common cold or a respiratory infection. An enterovirus. One that all of you inevitably have had before. Me, too. Probably many times.

Why it infiltrated my heart, causing something called myocarditis, no one knows, but it kills more than 300,000 people globally each year. “How can a common virus disable a perfectly healthy heart?” I asked my cardiologist, Dr. Fernando Mendoza. “I’ve had patients in their 20s die of this,” he said. They collapse and never get up.

I’m back at home, trying to return to normal life, but nothing feels normal when your heart can’t do its job anymore. One hundred percent of the time, my pacemaker is telling my heart when to beat. Turns out my case is unusual, since the pacemaker has to do all the work under all scenarios, so the technicians and I have been tinkering with its settings.

For 60 years, my own heart did this. Every second of every day, your heart figures out that you are resting, so it drops, all by itself, to about 70 beats per minute. Then, if you walk, it goes up, to maybe 90. Then, if you climb a mountain, it rises to 135 or whatever. It goes up at an even pace and comes back down at the right pace, slowing down, speeding up, always making sure your body gets enough blood and oxygen. It does all that smoothly and naturally, without your even knowing, without asking your advice.

Now I sit in a room, and a technician takes a special laptop, types in some numbers, and tells my heart what to do. Sometimes my pulse races up to 130 beats per minute if I just stand up and walk to the kitchen. That’s bad. So we adjust it. Sometimes it barely budges when I try to exercise. That’s bad, too. So we adjust it again. Then we have to figure out how long we want my heart rate to stay up after I exert myself. One minute? Two minutes? Who knows? I never noticed when my real heart did all the work.

Sometimes, just for kicks, they turn my pulse down to 30 beats per minute, to see if my own heart starts up. It never does. So they have to quickly set it higher or someone would have to rush in again with those paddles.

Each time that happens, I’m disappointed. Not that it really matters. At least I’m getting my money’s worth from the pacemaker. During this last adjustment, we tried four different settings. Each time I would walk down the hall and up two flights of stairs, then return so we could see what happened on the laptop.

After that bout, I came home physically and emotionally worn out, as if I had run that marathon that the E.R. doc asked me about. More than 10 months after contracting that virus, my heart is still inflamed, enlarged and damaged from the virus, and there’s too much pressure in the artery that feeds blood from my heart to my lung. My cardiologists say my case is baffling since myocarditis doesn’t usually disable the electrical system or harm the right side of the heart rather than the left.

The technician and I are in exact control of how and when my heart beats. Why, then, do I feel so helpless? The answer is that despite all this technology, we simply aren’t as good at this as a fully functioning heart.

“Can’t you just give me my old heart back?” I asked Dr. Mendoza one day, exasperated after an hour of tinkering with the settings. He smiled and touched my shoulder. “I wish I could.”

Sometimes I’m angry: Why did this happen, heart? It was just a run-of-the-mill virus! When I returned home from the hospital, I was scared. I told my husband that I feared I would never be the same again, although my doctors predicted I would recover.

So far, even with the pacemaker regulating my pulse, the damage the virus inflicted leaves me easily fatigued. I used to be able to jog (slowly!) three miles without stopping. Now it’s only a block before the shortness of breath stops me in my tracks. Even carrying grocery bags wears me out.

I realize what a thankless job the heart has. Beating every single second or less, grinding away day in and day out, instantly adapting to every move we make. I got 21,904 days out of my own heart before the warranty ran out. Thank you, heart. I’m sorry I didn’t appreciate you. It breaks my heart to see you fail.