Year of the Heart
Stories from a major heart surgery and recovery.
All stories by Barbara Ramsey unless noted otherwise.
Heartfelt
Like Aztec priests, surgeons are responsible for miracles.
I’LL BE HAVING heart surgery in another month. Which makes me think about something I witnessed long ago.
In medical school, I was once allowed to scrub in on an aortic aneurysm repair. The patient’s midsection was opened and the abdominal contents temporarily pushed aside. I was instructed to look from the abdomen upwards toward the diaphragm. There, near the center of the diaphragm, I could see the rhythmic quivering created by the beating heart above. The surgeon told me to slip my hand into the abdominal cavity, directly beneath the patient’s heart.
It was astounding. I’m not a religious person, but I believe in the miraculous. The movement of that person’s heart was miraculous to me. And what I found even more miraculous was the fact that I had the exact same kind of organ inside my own body. A living heart! This astonishing fist-sized muscle of flesh has been beating since before I was born. It’s never stopped, not once for more than seventy years—beating, for all intents and purposes, utterly of its own volition.
How can a heart possibly beat on its own, year in and year out, without our having to serve it, to worship it, to make constant sacrifices to it? My doctor-self may know how the heart manages to beat, but my regular person-self is mystified. Which is why I would have made a great rank-and-file Aztec: exposing the living heart makes sense to me as a sacred act.
As a doctor, of course, I understand the mechanics of a beating heart, and I’ve found myself surprisingly dispassionate about my upcoming surgery much of the time. Also, as my father was a surgeon, I’ve always thought of them as ordinary people, guys who come home late and grumpy and just want to watch Bonanza on TV. A person who enjoys a round of golf and a couple of martinis on his day off.
An Aztec priest would never watch Bonanza. He would become familiar with the thirteen heavens and the nine netherworlds, and be intimate with the shrewd, elusive god of fortune. Like my heart surgeon, an Aztec priest would be schooled for years in advance, then shrouded in a special gown and mask, and finally step into a place of great solemnity. A group of assistants would hand him special instruments to aid in the performance of a series of acts somehow both ritualized and spontaneous.
My surgeons, like those priests, will attend to their ceremonies. An anesthesiologist will render me unconscious, put a tube down my throat, then assume control of my breathing. Next a team of surgeons will crack my breastbone, open my chest cavity, and put me on a machine to circulate my blood. Then they will cut into the left side of my heart. Over the next three or four hours, they will remove an abnormal chunk of muscle that’s been partially blocking blood flow to my aorta, repair or replace my faulty mitral valve, and slice into parts of my left atrium. This last maneuver will be an attempt to stop my atrial fibrillation and reduce my chance of having a stroke. But it could also result in my heart failing to beat properly, so they may have to slip in a pacemaker before they sew me up again.
Unlike those long ago priests, my surgeons intend to keep my heart in my chest and encourage it to beat in the right way. They will seal it back up again once they’ve finished their healing ceremonies. If they succeed, the surgery will likely extend my lifespan and improve the quality of my life. And I will remain in whatever netherworld I currently occupy.
On my surgery and recovery
I had gone from an witty older woman to a two-year-old not yet potty trained.
BEFORE MY SURGERY, I was told to expect a three to five-day hospitalization. It turned out to be fifteen days.
Before my surgery, I was told to expect some chest pain. After surgery, I found they couldn't keep my blood pressure high enough to perfuse my brain, which made me a little—or was it a lot?—crazy. I discovered my left vocal cord was paralyzed, which meant my voice was barely a whisper and I risked choking to death every time I took a bite of food or drink of water. I had crampy abdominal pain associated with bouts of explosive diarrhea (apologies to the squeamish). I gained eighteen pounds of fluid in three days, necessitating the use of powerful diuretics that I knew could either save my life or kill me.
Before my surgery, I'd rarely felt sad. In the days following, I sometimes felt suicidal.
Before my surgery, my biggest medical procedure had been a tooth removal. (Don't laugh! It really hurt). After surgery, I laid in the ICU with a huge IV sticking out of my neck, two separate large bore tubes protruding from my chest, two peripheral IV's (one in each arm), and a tube coming out of my bladder. I had gone from an interesting older woman with a talent for witty remarks to a seriously disabled two-year-old who was not yet potty trained.
On the bright side, I was getting some of the best medical care on the planet. I still had a loving husband and devoted sisters. And many of my friends sent me love and hope and promises of homemade food once I was out of the hospital.
The most dazzling lights in my hospital world were a hospital chaplain named Trina, three Ethiopian nurses' aides named Azeb, Cal, and Lem-lem (possibly the kindest people on the planet), and a nurse named Liz (who teaches art to children in her spare time). They gave me reason to live. My main surgeon, Dr. Lara Oyetunji, a tall Nigerian woman with the arms of a linebacker, made it possible for me to live. Laying in my hospital bed, I craved both life and reasons to live it. Life alone is a pale, squirming thing in search of calories. Our reasons for living are as beautiful as the glowing nebulae seen by the James Webb telescope.
On her open-heart surgery
A vision of a death foretold.
By Kerry Tremain
I WAS SITTING in my living room in San Francisco in May, 1983, when Barbara first announced herself in her inimitable way. As she walked through the door, unexpectedly, with a mutual friend from Seattle, she said, "Hi, you don't know me, but I'm here to crash." Her energetic, cheerful entrance cut through the dark fog that hung over that apartment and my life in those days. Scanning the room, her eyes then landed on my stack of blues records. "Bobby Blue Bland!" she said, pointing to His California Album on top.
As she now struggles to recover from a radical surgery a month ago, a song from that album has been looping through my mind. "It may be nice and warm today. Tomorrow may be drizzled and cold," he sings in Up and Down World—a fitting title for the past three months. The song is about the end of a relationship, but on that long-ago evening, unbeknownst to both of us, ours was just beginning.
Yesterday, we shared that we had both reflected on our beginnings and the contrast between those enthusiastic young lovers and our life now that we face the undeniable reality of our vulnerable and unreliable bodies. I believe that in a couple of months she will regain or even surpass the energy and vitality that an occluded channel in her heart had sapped. I also believe—finding her near lifeless in the ICU a month ago, surrounded by tubes and monitors —that I've seen our deaths foretold.
But not today.
The woman in the mirror
I felt disconnected from my desiring self.
AFTER OPEN HEART SURGERY on March 7th, I simply wasn’t myself. The pale, haggard woman in the mirror elicited my love and attention but I didn’t know her anymore. My profound weakness and inability to perform even simple actions stunned me. As if I’d become a separate person, a third party, I’d ask: “What should she do now? Is it time for her to walk to the kitchen for lunch? Do I need to give her another pep talk on the importance of the treadmill?”
My self-consciousness wedged itself between my body and my being. I could do the required things without much thought—taking my meds, brushing my teeth, and going to the toilet. But optional activities, such as making quilts or answering emails or reading books, seemed distant and effortful. I didn’t feel sad or down, but I did have anhedonia—a lack of pleasure in my usual interests.
One day the word “listless” popped into my head and I wondered about the word’s origin. It turns out that listless is related to the Old English lystan—“to like, to cause pleasure or desire, to provoke longing.” To be listless is to be without those things. That was me. I had no longing.
I could feel certain pleasures. I loved cuddling with my husband at night. I loved the often hilarious phone conversations with my sisters. I read a variety of short stories—with my impaired attention span, they were better than novels—which captivated me with their flow of language. These bits, these threads, tied me back to my real self. But aside from those few things, there was nothing I longed to do.
In his book, A Leg to Stand On, Oliver Sacks recounts his recovery from a serious injury to his leg. He required a complex surgery and lengthy rehabilitation during which he lost the sensation of having a leg. He felt alienated and disconnected from it. Like Sacks, my surgery left me feeling alienated. I felt disconnected from my desiring self. The Buddha preached a release from desire, but this didn’t feel like a release. It felt robotic, disembodied.
These feelings finally began to dissolve a few weeks ago, slowly and almost imperceptibly. My appetite for food returned! For months I had to force myself to eat. My favorite chocolate bars sat in the fridge. I nibbled on them over days without enthusiasm. Now I finally had cravings. The chocolate bars didn’t even make it to the fridge.
The final piece to fall into place was my sense of time. For months after surgery, time became viscous, a slow thickness that I moved through. The flow of ordinary time, of one thing leading to another, was gone. I had to think about my actions and make a constant string of decisions. Sometimes the path between deciding to get dressed and actually donning my clothes seemed to stretch out endlessly.
But then, just the other day, I saw some of the previous evening’s clothes draped over a chair. I walked over, examined them, put some in the clothes hamper and hung the rest in the closet. I was shutting the closet door when it occurred to me that I hadn’t had to think about any of it. I’d automatically performed a multi-step behavioral sequence without having to make any conscious decisions. Wow! That union between my will and my action was thrilling, despite the triviality of what I’d done. I felt like Oliver Sacks when he was finally able to kick both legs in beautiful symmetry as he swam across a pool.
This feeling continued for the rest of the day. I had a desire to answer an email and I did so. I wanted to visit a friend so I got in the car and drove to her house. I suddenly realized I’d left the upstairs balcony door open and ran upstairs to close it. My activities have had a musical movement since then, a seamlessness that feels glorious.
I not only feel like myself, I am myself. I finally recognize the woman in the mirror.
I want to hold your hand
I grabbed my phone and saw that the hospital had called. There was no message.
By Kerry Tremain
IN MY EARLIEST memory, I’m walking down the alley behind our St. Louis flat with a little girl, holding her hand. We’re on our way to kindergarten. I can’t say with any certainty that it truly happened. I do know the image lodged in my brain at an early age and stuck. In the movies, a first kiss signifies mutual desire. In life, a first and lasting gesture of affection is to wrap your fingers together. As a teenage boy eager for such attention from a girl, the feeling when it happened was electric. It made me happy inside.
Even earlier, with my hand in my mother’s, I knew I was safe. Listening to the chatter of small birds—bushtits are my favorite—I know they are telegraphing to each other as they move, “I’m here! Okay, now I’m over here.” Holding mom’s hand was likewise a way to reassure each other, “I’m here.” Because her hand was so much bigger, mine could slip out for an anxious instant. The connection was dropped and had to be re-established quickly. And hand-holding was passed down the family line. I was the oldest of six kids and in a crowd it was my job to make sure all connections were secure. I’m reminded of those days when I see a group of tiny school kids on a field trip in a hand-holding train.
“I Want to Hold Your Hand” was the Beatles second hit song after “She Loves Me.” By rights, they should have released them in reverse order—how do you know she loves you until she holds your hand? It was a song my mother loved to sing with us in our VW bus when we took little jaunts to the store or to the creek to swim. The Beatles must have intuited that the first move in their lifelong relationship with us was to offer to hold our hands.
The last time I held my mother’s hand was in a hospital room twenty-two years ago. She gripped tightly at first. When her hand finally let go, she wasn’t here anymore.
Barbara and I still hold hands when we walk side by side. Our fingers reflexively reach out to lace together. When I see other couples in the neighborhood holding hands, young and old, I feel happy that I, too, still have a hand to hold.
On the day of Barbara’s heart surgery, I knew her life was in peril, but tried to avoid dwelling on the thought. When I’d said goodbye to her in pre-op at 7:30 that morning, the surgery was projected to take four hours. At 3:30 in the afternoon, the head surgeon finally called. She told me the procedure had been more difficult and complicated than they’d anticipated, but successful. I asked if Barbara was out of danger. She hesitated and then offered that the riskiest part was over.
Barbara was too sedated and groggy to visit after she was moved to the ICU that evening, so I went back to her sister’s house where I was staying. At four in the morning I woke abruptly. I instinctively grabbed my phone and saw that the hospital had called a few minutes earlier. There was no message.
When I hurriedly called the number, a nurse in the ICU answered. She told me to hold on. A long minute later, she held the phone to Barbara’s ear. I barely recognized her voice, a weak and broken whisper, but I understood her. “I need you to come hold my hand,” she said.
My year as a patient
As a physician, my experience has been somewhat different than most patients
A YEAR AGO on Halloween I noticed something was wrong. I went trick or treating with four-year-old Lu and his younger sister Millie on a short, candy-rich route that their mother had staked out. Mom brought along a wagon big enough to hold both of them, knowing they might flag in the face of so much excitement.
Twenty minutes in, both kids opted to ride, so mom and I took turns pulling the wagon. During a short uphill stretch, not even half a block, I was suddenly out of breath. What was happening? I’m a little old lady, but a strong one, and pulling a wagon with two toddlers shouldn’t have left me breathless and out of steam.
It was the first sign that I was having heart trouble and it began a year-long search for a diagnosis and successful treatment. As a physician, my experience with chronic illness over the year has been somewhat different than most patients. My underlying perception of health and disease is highly colored by my medical training and several decades of patient care. That’s mainly been a positive thing.
When the structural abnormalities in my heart were first described to me, I readily understood what I was dealing with. That made it easier to grasp why surgery was needed to fix certain problems and why medications were more suited to others.
More importantly, I have fairly realistic expectations. I don’t have magical associations with health care or awe-filled feelings about 21st century medicine. I internalized certain truisms long ago. Surgeries have complications and medications have side effects. Positives are usually associated with negatives. I’m optimistic but careful not to ratchet my hopes too high. Realism is vital when faced with a health care crisis—expecting super heroes and magic pills only leads to disappointment.
I’m also familiar with “hospital time”. Patients are constantly told what time certain events will occur. “You’ll be getting an EKG at 11 o’clock” or “The chest x-ray will be at 2.” I’m confident these events will happen, but never expect them to occur on schedule. Hospital time is contingent in the extreme—a nurse is called away to another floor, somebody’s heart stopped in room 604, the echo tech is sick. Getting released from the hospital is possibly the most contingent event of all. I never, ever ask when I’ll be discharged and expect to hear a single answer. If some hospital employee naively gives you a specific day and time, don’t count on it.
Being a physician is also handy in evaluating the skills of those who care for me. When I decide a given doctor or nurse is really good, I can make that determination with confidence. I’m not always right, but I don’t second guess them or fret that maybe I should be getting care elsewhere. Once I’ve had enough time and data with which to judge a provider, I generally stick to my assessment. This is huge. Having confidence in those who care for you is an enormous advantage, especially when things don’t go quite as you’d hoped. It’s hard enough to cope with illness itself without worrying about the quality of care you’re receiving.
But of course being a doctor has a problematic side as well. I can be extremely judgmental if medical professionals act badly. I hold them to high standards. When one doctor completely dropped the ball late last year, I was furious—coldly furious. I found another physician ASAP and never went back.
Even with these advantages, I was slow to fully realize that I’d have to prepare for the long haul. It’s been over a year now. Setbacks abounded, complications occurred, and meds failed to have the desired effects. While I’d expected all this in a vague way, I discovered I wasn’t nearly as resilient as I’d hoped.
I expected to improve, but often just stayed sick in new and different ways. I got better but I didn’t get well. This altered my self-image. I’m not as tough as I’d thought. I’ve had to acknowledge that my “realistic” outlook is sometimes misguided. I’ve told friends I’m well, only to be embarrassed to report the following week that no, I’m not so good after all.
That’s been so frustrating. I’d expected to improve at a fairly steady pace, even if not a quick one. Instead, I’ve had a start-and-stop/up-and-down/better-and-worse pace. At times it felt as if I were going in circles instead of forward. Adapting to this reality has been hard and I still haven’t fully accepted it. I know in my head that I may never return to the function I had two years ago, but in my heart I’m like my little friend Lu, now five years old, who regularly says, “Are we there yet?”
Happy heart
FOLLOWING OPEN HEART surgery in March, my recovery was complicated by recurrent atrial fibrillation, a heart rhythm abnormality that significantly interfered with my daily life. On October 2nd I had a catheter ablation, a procedure where they insert a tube into a vein in your groin and thread it into your heart. Through this tube, they can both freeze and fry various spots inside your heart in order to disrupt the “short circuits” that create abnormal heart beats. The procedure can sometimes be quick, just 15-30 minutes in some cases, or lengthy in more complicated situations. My ablation took four and a half hours.
Apparently it worked. While it takes three whole months to fully assess ablation success or failure, so far so good. I’m now able to exercise normally, climb stairs whenever I want, and be as active as I care to be. Last week I had an echocardiogram (echo), an imaging test that creates a real time video of both heart structure and motion, allowing a dynamic assessment of the heart’s function. My echo results were great. I am on the mend! I actually feel, from the inside, my heart’s newly found strength. The echo offers objective proof, but the feeling is even better.