Bigger, yet weaker: A picture diary of my failing heart
In 2008, after recovering from breast cancer, New York artist Vicki Behm contracted what seemed to be a bad flu. But symptoms persisted beyond the usual time. She eventually found herself in an ER, gasping for breath. Then she was diagnosed with a disease she had barely heard of.
This is Vicki's visual diary, annotated with her words, from her symptoms to her hopeful new life with a weakened heart.
First came fever
My first symptoms of the whole heart-failure journey were a lot of sweating and shivering. I visited our family doctor, Dr. Klein, who confirmed there was a nasty version of the flu circulating around New York City. I assumed I had caught it from the feverish, moaning kids at the grade school where I teach art part-time.
Eleven teachers, multiple artists, and most of my friends had the bug too. Three cases developed into serious pneumonia. There's no treatment for a bad flu, you just ride out a few miserable weeks.
Much too much breathing, too little air
The flu, asthma, emphysema, and congestive heart failure all share a symptom: shortness of breath. Because I suffered the devastating flu that had been passed among nearly everyone I know, our family doctor thought my gasps signaled lingering symptoms, maybe even progress into pneumonia. But the X-ray showed clear lungs. It was a tough five weeks because much of my life in New York involves climbing stairsparticularly to our "charming apartment in the West Village," a 4th-floor walk-up.
Life lived through a haze of sleep
By the third week I was over the fever, but wiped out. I could nap almost anywhere, anytime. My daily siesta was often a quick doze between subway stops, trying not to drool on the passenger next to me.
But this went beyond nodding off. It involved matted hair, tangled sheets, a cat on my head, and a hazy memory of The Lord of the Rings trilogy on DVD, half-watched over long stretches of day and night.
Six weeks of hacking away
Greta Garbo in Camille had the TB cough. My father had the smoker's cough. My mother had the something-caught-in-your-throat cough. And now I had the hacking dry cough. I sounded like an accordion negotiating with bagpipes.
I visited Dr. Klein. He took an X-ray to make sure I didn't have pneumonia. I didn't. Shortness of breath, exhaustion, and a cough are symptoms of both the flu and congestive heart failure. Who knew? Well, I was about to find out.
The ER intervention
He looked like Ice Cube, my rescuer. Here’s what happened: At home, I found myself heaving for breath like a dying consumptive. This didn’t feel like the flu. So I cabbed to the ER at St. Vincent's Hospital in Greenwich Village and joined 50 noisy patients, all waiting to be examined.
Among the crowd was this young, bloody man wearing a do-rag. He observed me hunched over, gasping and wheezing, and he berated the triage nurse at the computer. He threatened the guard on my behalf. Suddenly I was next in line. Without him I might still be sitting there, or dead. St. Vincent's may be rough around the edges, by the way, but the care I received after Ice Cube’s imprecations was top-notch.
The final diagnosis
Ever notice ladies with swollen feet and ankles? If they’re not pregnant, they may have congestive heart failure (CHF). This is because the damaged heart muscle of the left ventricle enlarges as it attempts to pump more blood, faster. The ventricle can't keep up, so fluid settles in the ankles, the abdomen, and/orin my casethe lungs. If the latter, the lungs become congested.
The final diagnosis (detail)
And as I soon learned after Dr. Elmquist diagnosed me with CHF, my heart will never snap back totally. I’m stuck with a big, slow heart.
On the bright side...
I could fit into my red shoes.
Why Me? (detail)
Like many chronic diseases, it's easy to identify the "what," but not so easy to identify the "why." Neither I nor my doctor had any idea where my CHF came from. Another heart specialist thought I got it from last year's chemotherapy for my breast cancer: One of the chemicals might have left behind a poison that settled in the heart. (See Vicki's breast cancer diary).
Dr. Elmquist believed the damage was most likely caused by the flu virus I had just had, or a past flu virus. In the end, it didn’t matter why I had CHF. The issue now became, how would I weather this scary-sounding disease?
Old habits implicated (detail)
In the good old days, like many of us, I wasn’t so chaste. I drank too many martinis, smoked too many Vantage cigarettes, ate too many doughnuts at 3 a.m.; I did too much, too often, and it was fun.
Today I don’t smoke; I don’t drink; I don’t eat processed food that comes in a box, a bag, or a can; and I eat very little sugar and no salt. I've learned to substitute club soda, raw carrots, and fruit.
Old habits implicated
Still, when I hear the sound of a touchdown cheer, I drool nostalgically for a bag of kettle chips washed down with booze and capped with a nice smoke.
No pain, but lots of bruises
One of the medical procedures I most feared was a hypodermic in the stomach. But I needed anticlotting meds. When the linebacker-size male nurse arrived to administer the first shot, I said, “Oh no, you're not.” He said, “Oh yes, I am, and it won't hurt."
It didn't. None of the 18 shots to my belly hurt. But they left attractive giant-hickey bruises. For an anticlotting treatment, I still prefer children's aspirin.
Weeping, sleepwalking, and sleep-eating
Every night for six weeks after the diagnosis, I woke up with a start at 2 or 3 a.m. and became hysterical for an hour or two. I woke my husband, Glenn. "What's wrong?" he asked. "It'll be fine," he said. In the end, my doc and I decided I was suffering side effects from the sleeping drug zolpidem (Ambien).
I also experienced nighttime sleepwalking, during which I ate half a pumpkin pie, a carton of ice cream, and a big chunk of good cheese. I had no memory of these picnics, I just saw the added pounds. So I gradually got off the zolpidem.
Meet my shocking new friend
This harness, called a LifeVest, is not a Guantanamo torture device. It is a defibrillator that will jump-start my heart if the "failure" part of "heart failure" gets out of control. And I do feel safe wearing it.
Should my heart suffer an “arrhythmic episode” (say, start beating 300 times a minute), the four round electrodes will pick it up, and the machine will screech. Then a voice will warn anyone in the vicinity to stand clear because a shock is coming. The battery will deliver a massive jolt through the treatment pads.
I asked the LifeVest rep if this will hurt. "Oh no," she said. "You'll be passed out by then." I wear it 24/7, except when I shower. (If I shower wearing it, I'm told, I'll be electrocuted. Heavy downpours make me nervous.)
The source of my new superpower
The LifeVest battery pack is huge, about the size and weight of War and Peace. I wear it in a black cloth case hanging from a belt around my waist. All I need for the Total Russian iPod Look are Khrushchev-era earphones and balalaika tunes.
Self-portrait of the artist with defibrillator
Like most middle-aged women, I hate any photo of me, even before it's taken. The mind is convinced the body is still in its 20s, despite the evidence. I felt, though, it was important to include a portrait of me in my heart defibrillator vest/harness. Shots of the harness alone recalled torture or chastity devices from the Dark Ages, but you can make out the flattering extra-wide straps under my camisole.
I wear the vest every waking and sleeping moment, so I'm used to strapping it on, recharging the battery, and positioning the many layers on top (support, T-shirt, and top shirt). The vest serves a second purpose: giant sweat sponge when I wear all those garments on my bike or the subway.
Stand back or feel my power!
If the LifeVest detects a life-threatening problem, the machine will beep loudly, a red light will flash, the pads will buzz against my body, and a voice will shout a warning. I can hold down the red flashing button and give my heart time to correct itself to avoid the Big Zap (if I’m conscious enough to press the buttons, the zap isn’t needed).
I opted to make little cards to hand out to onlookers as well, like the ones deaf people distribute. If I can no longer press the buttons, the LifeVest will warn onlookers to “not touch patient”lest a Good Samaritan share in the juice. So far, I haven’t had an episode: no warning, no buttons, no shock.
All my pretty pills
I never believed in pills, except for birth control and maybe a Tylenol every so often for my head. Now I take 14 pills a day. (My favorite get-well gift was from my husband, Glenn: a plastic daily pill organizer.) One pill slows the heartbeat but not the breathing. Another enlarges veins and arteries around the heart but not those in the nose or eyeballs.
I won’t stop taking Arimidex (for last year’s breast cancer) for four more years. I’ve phased out the sleeping pills, but I'll have to take the others for the rest of my life. With insurance, it's a $200-a-month drug habit. Without insurance, it would cost thousands. Dr. Elmquist says the meds have already saved my life.
The 5 stages of salt-free grief
Glenn is used to not eating much salt, but I could lap up an entire salt lick at snack time. I nearly burst into tears when I realized I could never again eat Anne Vaterlaus's delicious salads tossed with sea salt, or Liza Schoenfein's sliced breakfast radishes sprinkled with salt. Popcorn, any form of potato, poached eggshenceforth I could enjoy them salt-free or not at all.
Doc says I'll soon get used to no salt and savor the true flavors of food. I tossed out four varieties of salt, except for a little of the kosher stuff locked away for company.
I hate the name of this disease!
My wonderful heart doctor, Dr. Elmquist, suggested I see another colleague of his, Dr. Kukin, at Columbia University (they often compare notes). When Glenn and I went to visit Dr. Kukin, we had a bounce in our stepsthings seemed to be going well enoughuntil we saw his hallway sign. Not fair! The colonoscopy lab sign didn't say “Colon Cancer This Way.” But the sign to Room 9D seemed weighted with a horrible finality.
But once we saw Dr. Kukin's office, complete with a photo of the winning touchdown at the Super Bowl, a photo of Babe Ruth, and various signed balls, we were put at ease. The message? Heart failure is like bank failure: Bailout is possible. Life goes on. Plus, he had a plastic heart that comes apart; I just love playing with those things.
The future is not yet illustrated
I'm still wearing the sexy harness with heavy battery pack and will be popping pills forever. But a dark cloud has passed over our heads and things are clear; I feel good. I can paint, draw, shop, ride my bike, cook, meet friends, talk to my sister almost daily, and hang out and laugh with Glenn. No gym, yoga, swimming, or triathlons for now.
In late October I take the big battery of testsblood, EKG, sonogramagain. What will happen next? Defibrillator implant? Heart transplant? No one knows. But for now, my heart has not failed me. I actually feel better than I have in years.
The proper karmic container for this notebook
Milagros (miracles, in English) are small metal effigiesof body parts, animals, people, possessions, cars, insects, vehicles, plantsbought by good Mexican Catholics when they suffer a misfortune or celebrate a cure. Once you buy your tiny metal tongue, bicycle, martini glass, or scorpion, you pin it to a gigantic red velvet padded framed space in the dark church and light a candle.
Even though I’m an atheist, I'm hoping the weight of ancient history and the 39 heart milagros on my sketchbook holder will bring me good karma. I don't believe in karma either, but when you face a failing heart, you use all resources at hand.
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Vicki Behm, 58, is a New York City artist. Her paintings and prints involve geometric designs influenced by her mother's quilts, which were made in St. Louis. Behm has filled nearly 200 sketchbooks with drawings and has spent seven summers in Mexico making art. She teaches part-time for Studio in a School and at Brooklyn Friends School. Her husband, Glenn Coleman, is editor of Financial Week.