medical – Witness Marks

I’ll Hold That For You

I’ve been pondering lately how most people love a victor’s tale. And, if not, how they then are quick to root for the underdog. If you think about it, more often than not, what catches the attention of most is a story of triumph: of challenges faced, odds defied, and struggles overcome.

It’s true—some people genuinely love a good tragedy. No judgment there. After all, many of the greatest works in literature are tragic at their core—think Romeo and Juliet or Macbeth. If tragedy didn’t strike a deep, strangely satisfying chord in us, Shakespeare’s works would never have endured with such popularity.

But what we really want is a neat and tidy ending. We crave stories that, while compelling, follow a predictable pattern and end tied up with a bow. We want an engaging exposition, a captivating rise in tension, an electrifying climax, and a clear, fulfilling resolution.

In short, we want to be entertained!

Also, we’re uncomfortable sitting in discomfort, even when—especially when—it’s not our own.

So, how then do we do we deal with those whose stories don’t follow a traditional narrative arc with that desirable rise and resolution? What do we do those whose stories refuse to tie up in a neat, tidy bow, that linger in the uneasy space between conflict and resolution? Not yet a triumphant tale of victory, but not quite a tragedy either. How do we support those still waiting for their happy ending?

I was told I was going to be listed for a heart transplant sometime around April 30th, 2022, and officially placed on the heart transplant waiting list on June 14th of that same year. I was initially listed as a status 6, the lowest active level of listing, meaning my wait could realistically last anywhere from one day to one year with the likelihood being closer to one year. I was ready to wait. And my expectation was to learn patience in the process.

But our expectations all too frequently fall short of reality.

All told, I waited for a total of 18 months—to the day—for my heart transplant miracle. And while I certainly learned a great deal a patience, I learned so much more. For starters, I learned that the transplant–what seemed like the very climax of my story–was really just the beginning of another chapter of my story. I also learned that for most of us this journey is an oddly lonely adventure, one stitched together with dramatic highs and lows. Lab results swing like a pendulum, emotions follow close behind, and we find ourselves oscillating between the cold suspense of waiting for test results and the rush of relief when an appointment brings good news. There are heart-pounding moments in the cath lab, yes, but also long stretches of quiet, slow page turning in waiting-room chairs.

But there is rarely a truly satisfying resolution. This story goes on and on—not in the grand, sweeping way of an epic, but simply as an overly long narrative.

I was talking with a new friend, Alison at Bonus Days magazine , someone writing chapters in her own epic journey, and she recently said something to me that really resonated. We were commiserating about the ups and downs of living life post heart transplant and I apologized for unloading a few frustrations when she said, “That’s okay. I’ll hold that for you.”

I’ll hold that for you. What a lovely sentiment.

What I felt in that moment was validation. She took a seat next to me in the waiting room and agreed to turn the next page of this overly long, not-all-that-epic tale I’m writing. She’s agreed to stand by this unlikely heroine while I’m living my main-character moment.

In this space, where not every book is written with a victorious conclusion or a tragic-yet-inspiring denouement, perhaps the part of the story that matters most is not the thrilling accounts of victory or the dramatic scenes of defeat, but the subtle, life-changing character development that takes place between the lines.

The Secret Language of Worry

I’ve heard it said that honesty is the first casualty of illness. I’d argue that honesty is the first casualty in any struggle. I first learned this when I took my then fourteen-month-old daughter in for a developmental evaluation, ordered by her pediatrician after we first noticed her having seizures.

After watching her “play” for nearly an hour, a speech therapist and a registered nurse brought me their assessment: moderate to severe global delays. With a cry trapped in my throat, I asked, “Will she catch up?” The two women looked at each other, glanced at my daughter, then at the floor—never at me—and said, “We’ve seen miracles.”

Was it a lie? Maybe. Maybe not. I don’t know. But I do know it wasn’t complete honesty.

This was my first exposure to the secret language of worry. Since that time, I’ve become fluent in this unique dialect.

It begins with the eyes. They look down and to the right, or over your left shoulder. The face may turn toward you, but the eyes wander elsewhere. There may be a smile, the conversation might seem jovial, but the eyes are elsewhere. Even when truth is spoken, the eyes often drift away.

You will try to gain eye contact, and you might succeed momentarily, but then your attention is drawn to the mouth. Around the lips is a tightness—a subtle stiffness. Perhaps the laugh is forced, the smile lingers too long. In some settings, masks conceal this nuance, but you’ll notice the sound in the throat, the clearing of vocal cords. Even a brief pause before answering can be a tell in the language of worry. What is this person really trying to tell me?

As you become fluent, you notice the subtleties of speaking this language. You learn its origins. Suddenly, you avoid eye contact when your spouse asks if you’re feeling okay. You find something on the floor to study when a friend asks about lab results. Your voice weakens, and your throat clears when a son or daughter asks about a future date. Will you be well enough then? Who even knows?

The secret language of worry exists as a shield, both for the speaker and the listener. We live in a world overflowing with information—sometimes empowering, sometimes overwhelming. The truth can hurt. We carefully release it, bit by bit, gauging the reaction of those we love. Can they hold this worry with us?

In a few weeks, I will return to the hospital for my two-year heart transplant follow-up. They will run labs to monitor my organs—especially my struggling kidneys. They’ll perform a chest X-ray, EKG, echocardiogram, right heart catheterization, myocardium biopsy, and even a left heart catheterization with angiogram to monitor cardiac allograft vasculopathy (I just wanted to flex some medical jargon). As the date approaches, I find myself slipping into the secret language, explaining and justifying my concern repeatedly.

Oh, how I wish I could replace this language with the foreign tongue of celebratory optimism. I rehearse affirmations and speeches of positivity in my mind. But over the years, the language of worry has become ingrained, and it pulls me in too easily. Gratitude helps. Prayer helps. Patience helps. Until then, I practice them all.

If you catch me slipping into this secret language, try to relate. Empty platitudes have no translation in the language of worry; they ring hollow to those fluent in this tongue. Just listen. Listening helps.

In the end, we all speak the language of worry in our own way—it is, after all, a universal language.

But I Didn’t Like My Face

I’m no Pollyanna, but I wouldn’t consider myself a pessimist either. In any situation, given time to think, I feel I have the ability to see both the good and the bad. When I was listed for transplant, Aaron gave me this cute little trinket—a cloud-shaped tchotchke engraved with the words Always find the silver lining. And that has become a mantra of sorts.

I decided early on that I was going to use the opportunity of receiving a heart transplant as a chance to improve myself—to truly have a change of heart. I often fantasized about waking up from surgery, or at least coming through recovery, with this grand new perspective that granted me wisdom, patience, kindness, and the ability to find a well of joy in life that was so often more difficult to find before. Receiving this second chance at life, this priceless gift, would make me a better person. And I tried—I really tried.

But it’s an uphill battle.

I had been warned about the nasty-but-necessary steroid prednisone. The one that makes you angry, tearful, sleepless, hungry, jittery, giggly, ravenous, and basically causes you to climb the walls. And for me, it did all of those things. I hallucinated (ask my family about the jelly-headed aliens and the Christmas light parade); I stayed up all night writing and rehearsing my TED Talks—plural; I broke down in tears in front of the poor cafeteria worker when I was reminded the quesadilla didn’t work with my dietary restrictions, just to name a few of my adventures on prednisone.

And then, one month post-transplant, I had my first rejection episode—a condition where the immune system attacks the transplanted organ. I was called back to the hospital for an extra blast of IV Solu-Medrol, an intense steroid. After a three-day stay, I left the hospital and waited for the inevitable… moon face.

I would place a picture here, but I don’t want to. Just Google an image of Alec Baldwin.

I tried everything to take the swelling down: gua sha, red-light therapy, lymphatic drainage, depuffing masks—you name it, I’ve dropped dimes on it. To no avail.

I was so sad at what my life looked like, I cried, “I am a monster!” Aaron hugged me and assured me, just like everyone else had, that it would go away soon.

It took about a year for the swelling in my face to go down—at least in my opinion. It took just long enough for me to have a recurrence of thyroid cancer that required surgery, which threw me back into rejection—again. Another blast of steroids, this time outpatient, led to another, albeit slighter, moon-face period.

You don’t even have to wonder—I’ll save you the energy and volunteer that I am, indeed, vain. I’ll admit it. I like to look nice. The first thing I do in the morning is put on makeup. Well, actually, I brush my teeth first, but makeup comes before I leave my room. Even so, I tried finding the silver lining: “Look how the prednisone puffiness has almost erased my fine lines and wrinkles. Maybe I’ve found the fountain of youth!”

Aaron would say, “You’re still beautiful to me, and you don’t look anything like Alec Baldwin.”

Friends kindly told me they didn’t even see a difference. Yeah, right.

And, of course, I heard the inevitable: “It could always be worse.”

Never—I repeat, NEVER—say these words to anyone, especially a transplant patient.

It got worse.

In June, I bit my lip. Who hasn’t? It seemed innocuous at first. But over the passing days, that bite turned into a canker. I’m no stranger to cankers—especially since transplant and being put on the immunosuppressant sirolimus. I didn’t think much of it and just steered clear of the right side of my mouth while eating for a while. But things got worse—in a big way.

Two weeks later, we flew to Ohio to help our daughter move from Cleveland back home to Utah. She met us at a hotel with her car loaded with boxes, and we began driving across the country. My canker hurt, and I was mainly eating soft foods and shakes to avoid injuring it more. Nevertheless, while stopped for the night in Nebraska, I woke up in excruciating pain. I went into the bathroom of our hotel room to inspect my lip. It was so swollen I thought the skin might actually split. The canker itself was about the size of a corn kernel, but the lip was hugely swollen, and I began to worry.

Here I was, literally in the middle of nowhere Nebraska, far from a hospital, a full day’s travel from my transplant team, and I didn’t know if I had some kind of rare, raging infection or what. I kept ice on it the next day as we made our way home, where I got myself to Urgent Care as quickly as I could.

Over the next few days, I went back and forth to Urgent Care and back and forth on the phone with my transplant team, trying to figure out what was going on with this mouth ulcer—until I found myself in the hospital with the world’s worst canker sore, which I had begun calling Lippy. It was so big it deserved a name.

Again, I would place a picture here, but I don’t want to. It makes me sad. But you can find it on my Instagram. Just imagine a gnarly mouth sore about the size of a large gumball, with swelling into the cheek.

I was in and out of the hospital over the course of two weeks as Lippy got worse and worse. I couldn’t eat due to the intense pain it caused—anything I consumed had to go through a straw. I couldn’t talk, and I frequently drooled. At the same time, I was struggling with terrible migraines. And every professional and specialist at the University of Utah looked at me with pity and said, “I have no idea what this is, but it sure looks bad.”

These are words nobody should ever hear.

I was tested for a myriad of infectious diseases, parasites, amoebas, autoimmune diseases, even multiple forms of cancer. I gave blood samples, stool samples, tissue samples and biopsies, and had a CT scan. But in the end, the doctors were split: it was either a bad reaction to sirolimus or a reactivation of Epstein-Barr virus. Either way, the treatment was time to heal and—yes, you guessed it—more steroids.

I was struggling.

My heart transplant had been nothing short of a miracle—I was truly grateful. And in the grand scheme of things, I’d been blessed with a fairly easy time and few setbacks with regard to transplant. Others really did have it worse. I knew this to be true.

But I didn’t like my face.

And I hated myself for it. I wanted to like myself, inside and out. I wanted to be 100 percent happy and grateful all the time post-transplant. But here I was, regretting everything. If life post-transplant meant constantly worrying about cancer, infections, rejection, and hating what I looked like, maybe I’d made the wrong choice when I accepted this heart. Ouch—that hurts to admit.

At the end of the day, the only choice I had was to sit it out and wait. Wait for Lippy to heal and for, eventually—hopefully—the swelling in my face to go away. And after two months, Lippy did pretty much go away, except for the scar tissue left behind. The puffy face, well, that may just be my new normal, at least in part.

I think it’s fair to say that two contrasting things can be true at the same time. I am finding that I can be grateful for my transplant and also be upset about some of the hardships it brings to my life. I can find joy in celebrating life’s milestones I get to witness—like my son’s wedding and the birth of my first grandchild—and still bemoan the chronic condition I now live with. I can be grateful for life and still not love my puffy face.

What I’m learning is that change is a choice that comes only by consistently showing up with gratitude. That new perspective and change of heart I hoped for with my transplant is up to me—and that it’s also perfectly acceptable to see the clouds along with the silver lining.

When the Path Became Clear

The journey toward a heart transplant began long before I realized what was happening.

I had started seeing a new heart failure specialist at the University of Utah, and he began ordering a series of specific tests. The first was an overnight pulse oximetry test. He explained that it would help determine whether my fatigue was caused by heart failure or possibly sleep apnea. I later learned that this test is just one of many routinely used in a transplant evaluation.

At one of my appointments, Aaron asked the doctor how often people with ARVC eventually need a heart transplant. I didn’t understand why he would even ask such a question. I wasn’t going to need a heart transplant—certainly not. I was relatively young. I was otherwise healthy. Right?

The doctor explained that the determining factor would be whether my arrhythmias could be controlled. If they couldn’t, transplant would become the necessary option. He then ordered a VO₂ max test and scheduled a follow-up appointment later that month.

Shortly after that follow-up, my heart “declared itself.”

I began experiencing difficult-to-control ventricular tachycardia. After one episode that lasted more than an hour, Aaron took me to the nearest emergency room. The ER physician quickly performed a cardioversion, but unlike the first time, my heart continued slipping back into VT. He called my doctor at the University of Utah, who requested I be transferred there for observation.

That night, I was transported by ambulance up to the U, where I would remain for 12 days—moving in and out of the ICU.

The next morning, I woke up in the cardiovascular medical unit. My doctor came into my room and said, “Remember when we talked about this in clinic? You’re having multiple episodes of VT. That means it’s time to talk about transplant.”

It was Saturday morning. He told me the earliest I might go home was the following Tuesday. But later that same morning, I went back into VT and had to be transferred to the ICU. There, the VT continued—coming and going despite being on multiple IV anti-arrhythmic medications.

That’s when I was told, plainly, that a heart transplant was the best option. With my consent, the team would use my inpatient stay to complete the full transplant evaluation. I would also undergo an epicardial ablation in hopes of locating and treating the source of the VT.

At my hospital—though I understand this can vary by transplant center—the transplant evaluation included:

Extensive blood work (more than 20 vials drawn in one sitting—torture)
Cardiac catheterization to evaluate coronary arteries, pressures, and overall heart health
Echocardiogram (ultrasound of the heart)
Stress echocardiogram
VO₂ max test
Chest X-ray
Pulmonary function testing
Abdominal ultrasound
Ankle-brachial index test to assess blood flow in the arms and legs
And one particularly strange test involving a large plastic bubble placed over my head to measure gas exchange while breathing

It was a whirlwind week in the ICU. Because the University of Utah is a teaching hospital, there was a constant stream of doctors, residents, fellows, nurses, student nurses, and pharmacists in and out of my room—a room with no bathroom.

There was no privacy. Every time I had to use the bedside commode, I found myself breaking down in tears. It was humiliating and overwhelming, and something I hope and pray I never have to experience again—though I know I will, post-transplant.

After eight days in the ICU, I was transferred back to the cardiovascular medical unit. The epicardial ablation was considered successful. The VT was controlled—at least for the moment. However, the procedure allowed my doctor to see just how severely scarred and damaged my right ventricle truly was. He told us that, given what he saw, heart transplant was the logical next step.

After a few more days in the CVMU—and twelve days total in the hospital—I was finally discharged.

But this was not the end.

I would be back.

The Day My Heart Broke (part 2)

I woke from sedation still in the same trauma room in the emergency department. Aaron sat in a chair not far from my gurney, looking tired—and maybe a little sad. He was still holding my coat, shirt, and shoes.

As I came to, I apparently laughed and said something about dreaming of Halloween. I never believed those stories about people acting completely off their rocker while coming out of sedation. I guess I do now.

The doctors released me that day, but not before issuing firm warnings: don’t do anything exciting, don’t drink caffeine, and find an electrophysiologist as soon as possible. And not before I overheard a nurse remark that she hadn’t seen someone with a ventricular tachycardia heart rate that high who was still conscious, alert, and talking—and wondering aloud whether I should really be going home.

We left and tried not to think about what lay ahead. That proved impossible. We googled. We searched the internet and social media. We found a lot of information. I remember reading countless stories—many on Instagram—about people going into VT for various reasons, including arrhythmogenic cardiomyopathy (ARVC or ACM), along with other cardiomyopathies. I initially dismissed ARVC because everything I read described it as genetic, and I couldn’t think of anyone in my family who had died from an unexplained heart condition.

Still, something gnawed at the back of my mind.

Through a friend and client of Aaron’s, we found ourselves back in the office of Dr. Crandall, who had treated me for tachycardia years earlier. He ordered an echocardiogram, which he told us looked completely normal. Even so, he recommended another endocardial ablation and electrophysiological mapping to determine where the abnormal rhythm was originating. His office scheduled the procedure for two weeks later.

The day before the procedure, I logged into my chart to check the results of my required COVID test and noticed the echocardiogram report was available. I didn’t waste any time reading it. Much of it was incomprehensible to me—measurements, numbers, terminology I didn’t understand—so I skipped ahead to the section labeled Impressions. That’s where I read the words: moderately to severely enlarged right ventricle.

Well, that can’t be good, I thought.

That night, I showed the report to Aaron. Neither of us could understand why we had been told my heart looked completely normal if the report clearly stated my right ventricle was enlarged. Later, I would be told it was likely because I was an athlete—apparently endurance athletes often have enlarged right ventricles. (For the record, I am not an athlete.) The next morning, before I was wheeled into the cath lab, we asked the doctor about the enlarged right ventricle.

“Hmmm. I’ll take a look at that,” was his reply.

The cath lab is a cold, mechanical room—one I can only describe as masculine in nature. Large X-ray machines loom overhead. Monitors and screens line the walls. There’s a glass viewing wall and a narrow table for the patient to lie on. As I was prepped for the procedure—which included a very…intimate shave—I felt deeply alone and scared. I realized I was the only woman in the room. The lab that day was staffed entirely by men.

With the exception of one technician who spoke kindly to me, the staff talked about me as if I couldn’t hear them. They speculated about my possible diagnosis and downplayed my symptoms. I remember thinking that this flippant dismissal was exactly why I was there in the first place. If the doctors I’d seen over the years had listened when I described my racing heart—rather than telling me I was fine, not to worry, or to “just take more magnesium”—maybe I could have avoided this entirely.

I’ll spare you most of the details of an endocardial ablation. Suffice it to say, they puncture veins or arteries in your groin and thread wires up through your body—past your pelvis, through your torso, and into your heart. It’s wild, really.

After the procedure, I woke in outpatient recovery, lying flat on my back with an extremely full bladder. They flood you with fluids to help regulate your body temperature while they burn tissue inside your heart. It was incredibly uncomfortable. My nurse, though, was wonderful. She helped both Aaron and me feel calm and showed genuine care for us.

While I was under sedation, Dr. Crandall explained to Aaron that although the procedure itself was successful, they had observed some concerning findings. Based on my heart rate, the origin of the abnormal rhythm, and the condition of my right ventricle, he suspected I might have ARVC. He recommended a cardiac MRI within the week.

Three days later, I endured the torture that is a cardiac MRI. The technician told me it was the longest MRI they perform. She wasn’t kidding. I lay on my back in the tube, holding my breath on command, for nearly an hour. When it was over, she looked at me with sympathetic eyes and asked what the doctor was looking for. I explained that he suspected a form of cardiomyopathy. She nodded and mentioned that the walls of my heart were “quite motiony”—whatever that meant.

I’ve had MRIs before. I’ve had family members wait weeks for results. I fully expected a long delay. I was not prepared for the phone call the very next day.

“The results of your MRI are in,” the doctor said. “It does appear that you have arrhythmogenic right ventricular cardiomyopathy. I’m referring you to a physician in the heart failure clinic—his office will call to schedule. It’s genetic, so you’ll need genetic counseling, and all of your children will need to be tested.”

With that, the world as I knew it—the life I had built and the future I had imagined—vanished.