A Big Heart

Up until recently I’ve had a congenial relationship with my heart. We’ve had our hiccups, but nothing serious. It’s done what it’s supposed to do, and for the most part, I like to think that I’ve treated my heart with the respect it deserves. Except for occasional binging on donuts or worrying too much about things I can’t control (like aging, like if my children will be happy in their lives, like asteroids crashing into earth) - I exercise, I eat well, I drink moderately and over the years, I’ve seen different therapists who have taught me things like taking deep breaths which has been scientifically proven to benefit our hearts well-being. My heart, in turn, has kept me alive. For over 66 years it has lub-dubbed its way fully into my trust.

There was that time very early on when I did accuse it of betraying me, of growing too large. I am not talking metaphorically – but literally – too large. I had read a magazine article that featured a boy whose heart had grown too large. The boy was twelve and so was I. The boy needed a heart transplant and the black and white photos of him lying so bravely in his bed terrified me.

Decades later I’ve looked for this article, I’ve googled big heart, transplant, boy, life magazine, you name it. I’ve googled the exact year and month that I’d read the article. It was the same year and month my oldest sister got married and went away. November 1967. But I’m unable to find it, so now I wonder if I imagined it.

But that was then.

May 2021, I woke up with what felt like an inhaled hot ember in my left lung. I told my husband about this feeling. “Do you think it’s a symptom of Covid?” This was before tests were easily available, when I was spending a lot of time in the house, and my husband still went into an office to work. I worked in our drafty old Victorian flat full of places hard to dust and places not that hard to dust but just weren’t dusted. Our allergies frequently posed as symptoms of Covid and there was a lot of time to worry about it. My husband said what he always said: “Maybe you should call the Doctor.”

Which I did. Which then led to the problems I’ll eventually get to. The problems of an enlarged heart and a faulty electrical system. Which lead to the bigger problem of a crack in my self-image as a healthy person.

There is one more thing about my sister’s wedding.

I was happy for a wedding, but my own heart was breaking. She would be leaving for good, headed to the other side of the country. My own heart ached, at first metaphorically, not literally.

Before my sister left with her new husband, she was married in our living room. While the adults stood toasting the couple with champagne in rented glasses, my cousins and I ran wild through the house, laughing so hard someone peed their pants. Then everyone was gone: the Judge, the guests, the happy couple. It was just me and my parents in an otherwise empty house and a literal pain in my chest, worse when I breathed. It was probably from laughing so hard but having just read about the boy in the magazine I self-diagnosed an enlarged heart. I was sure I would need surgery which I solemnly announced to my parents. They just chuckled and directed me to take out the garbage as they put the house back to what it was before the wedding.

The point is, I am basically a healthy person, but I often come down with one fatal illness or another. In the beginning of the pandemic, when everyone was afraid of getting sick, I felt right at home. Welcome to my world. I’ve since heard this called “medical anxiety”.

My mother called it hypochondria. When she wasn’t laughing about my self-diagnosed enlarged heart, my mother spent a lot of time yelling at my grandmother who carried a Merck Manual around like a religious women carried around a bible. My grandmother was sure she had this or that disease and that she was dying and would beg my mother to take her the doctor, which my mother did. But they could never find anything wrong except a little diabetes and maybe some high blood pressure. Things you might expect in your late eighties.

“Ma, you’re going to outlive us all,” my mother said.

But my grandmother did not outlive us all. In fact, she died when I was twelve, around the same time my sister left, and I don’t know if it was from one of her self-diagnosed maladies but there you have it – she was afraid of dying and, boom, she was dead. Which proved something. And I began to be afraid too.

Unlike my grandmother I didn’t carry around the Merck Manual. I didn’t have to. When I was 20, I went to nursing school and so I became fully acquainted with everything that can kill you. Our bodies were the danger, ready to turn on us at any moment. And like my grandmother dropping dead, there was proof of this everywhere. Friends’ mothers dying of cancer. Friends of friends felled by the flu. Nursing school gave names to conditions I couldn’t have imagined! Encephalitis! -it only took one mosquito. Meningitis! – it took less than a kiss. ALS! it could happen to healthy baseball players. Studying was like reading a suspenseful novel where I would skip to the end of each medical condition in my textbook to see if there was a cure.

Also in nursing school, and unlike my grandmother, I learned how to assess if my impending demise is real or imagined. Short of breath? I can check my nailbeds to be sure they aren’t blue. And now I have my very own pulse oximeter, made popular by Covid. Headache? I could do my own neuro checks, to rule out brain tumors, shining a light to be sure my pupils dilated equally, grinning in the mirror to be sure my worried smile was even..

And this “medical anxiety” isn’t a constant. I can go months, even years without the feeling of impending doom. Most of the time I think of myself as healthy. Very healthy. A healthy hypochondriac. Most of my fatal illnesses can be cured by intense aerobic exercise, walking, or running or climbing stairs all over San Francisco. And yoga. And deep breaths.

But when I can’t shake the fear, when deep breathing doesn’t work, I call the doctor.

Which is what I did, May 2021, I called the Teladoc. From my corner of the computer screen I gave a complete medical history, including my anxiety, including my respiratory allergies (could I have sneezed too hard?), including a description of a back bend I’d tried and failed at in yoga, (could it be a pulled muscle?), including the forty minute trip to Trader Joes (could it be a weird form of Covid – maybe another virus?) but the Teladoc refused to engage in my differential diagnostics. She just said: “Older woman, chest pain, we need to rule out a heart attack.”

I said: “It’s not a heart attack, it feels like lung.”

And she said: “You do know your heart and lungs are very close.”

I knew she meant in physical proximity to each other (I also took anatomy and physiology in nursing school) but the way she said it made me experience FOMO on the spot – fear of missing out – like my organs were conspiring, like they knew something I didn’t. I still didn’t think it was a heart attack and the truth was, the symptoms were resolving as I spoke.

But I dutifully went to urgent care. A shiny pop-up clinic with a friendly jolly doctor who said: “It’s my job to look for the worst so let’s just do an EKG and make sure it’s not your heart.”

It didn’t take long for the efficient technician to apply the cold jelly and the wires. I lay comfortably on the exam table while jagged mountains, rolling hills and crevice like valleys, all representing the electrical system of my heart, rolled out on pretty pink graph paper. By the time I was dressed again, the symptoms I had been feeling, had completely resolved. Well, this is a fun outing for a hypochondriac I thought, joking with myself.

Then the less jolly, still friendly doctor came in and said: “Well, you’ve put a wrench in my day.” He was also joking - about being annoyed, about the part that made it about him- but he clarified:

“The EKG looks like you’re having a heart attack.”

He sent me to the emergency room.

Six tubes of blood, four hours on a gurney, and two EKG’s later they told me it wasn’t a heart attack. They didn’t know what was causing my heart’s electrical system to make the squiggles go upside down instead of right side up.

So, in June 2021 there was an echocardiogram. They bounced sound waves off my heart to examine the heart’s size and blood flow. What they saw, what they thought they saw, was that my heart was enlarged. Yes. LITERALLY, the apex was bigger than what they thought it should be, which often isn’t a problem, but it COULD be a problem. I could drop dead – which I suppose is always a possibility for anyone – but what they thought I had, think I HAVE, perfectly young and healthy people do drop dead from. I’m 67 years old, much too old to drop dead young.

Dropping dead suddenly has never been in my repertoire of ways to go except for a very short time, in my forties, when I worked night shift. I’d come home, close the blackout curtains, and put in earplugs. Earplugs muted the sounds of the household, the children getting ready for school, doorbells, telephones, and it also muted the city sounds outside. But earplugs amplified the sounds in my body. The beating of my heart, the rushing of the blood in my ears became louder, more distinct. It was then I realized that I took my heart for granted, WANTED to take it for granted, I didn’t want to be responsible for the fact of its beating being the only thing between being here and not here. I don’t know why I thought I HAD to take responsibility for something that it was doing perfectly well without me. Just one more thing I had no control over. Eventually the sounds became less insistent, more reassuring. It didn’t need anything more from me to do its day-to-day job.

This story is much longer than it has to be. I will make the rest of it short especially since it is still not clear how much longer I have to live. Which I suppose is true for everybody.

There were tests. There were more colorful echocardiograms, accompanied by long chats with the technicians, some who shared too much (stories about patients whose heart function deteriorated rapidly) and those who didn’t share at all (just a worried face and more cold gel). I got to run on the rickety treadmill. I got to wear a little black box that recorded everything my heart did for three weeks. I got to take my deep yoga breaths in an MRI tube which has the reputation of a panic attack machine but was actually quite cozy, like a (noisy) toboggan, or (noisy) cocoon. There was more blood drawn and there were more telehealth visits on zoom, this time with specialists.

In between tests were weeks and months and it was an interminably long summer of feeling fragile, which was very different than my usual anxiety. I didn’t die, but symptoms popped up like whack-a-moles.

An aching left shoulder!

A feeling of fullness in my chest!

A palpitation!

I’d feel one thing one day, it would go away the next only to be replaced by something new.

There was a Facebook page of people with big hearts who have serious complications. Some have surgery and they post pictures of themselves in the hospital with scars on their chest, like all their stuffing had fallen out and all they could find was thick black thread to sew themselves back together. They discuss their medications. They tell stories about new hearts they received and thank the young person who died young to give it to them. Once and a while someone dies but most of the posts list their symptoms. Every single symptom I could muster if thought about it hard enough.

Shortness of breath!

Feeling dizzy!

Fatigue!

Never mind I still walked six miles a day and climbed a thousand feet without difficulty.

True I was tired after working all day. True I only felt dizzy when I checked to see if I felt dizzy. True any shortness of breath occurred when I thought about my heart stopping suddenly. Or stopping altogether. I felt like my heart had betrayed me and I was as suspicious as a lover being cheated on. I can’t have a heart problem! I argued with no one. I’m a healthy hypochondriac. That means: Nothing is really wrong with me.

Nothing is really wrong with me.

But I do have a big heart. Literally. Just like that little boy maybe. Hypertrophic Cardiomyopathy, it’s called. With a name like that, you know it’s not a metaphor. It’s a weird genetic defect. Most people who have it don’t know they have it. They’ll never know. I wouldn’t have known if I didn’t get that EKG.

By October 2021, after all those tests, the cardiac specialists were starting to lose interest in me. My heart was doing everything it was supposed to be doing. It wasn’t losing its elasticity. It was pumping blood efficiently. It wasn’t firing erratic electrical messages that would make it stop or make its beating ineffective. In fact, they didn’t know why the EKG was abnormal. But they were no longer worried. They would follow me yearly.

I should let them know if I had any symptoms.

But of course, as soon as they said that anything even resembling a symptom went away.

The Blame Game

Elena