patient-stories – 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.

He Swept My Floor

My son is currently facing one of those big life choices: which path to take after college. He’s pre-med, but as we all know, while many are called, few are chosen. Not everyone who intends to go to medical school will actually find themselves on that journey. He’s also considering applying to a PA (physician assistant) program. Whatever path he chooses, his goal is the same: to work with patients in healthcare. And he’s diligently preparing himself now, no matter what the future holds.

Recently, someone close to him said, “We’ve decided you need to go to medical school because one day you’ll regret not going all the way.”

I bristled immediately. While I believe my son is smart enough to get into medical school, if he chooses a different graduate program, I will be proud of him. I would never see him as not having gone “all the way.” And here’s why: my son’s motivation for entering the medical field—at least in part—is to have a positive impact on the lives of others. He doesn’t need to be an MD to do that.

I may not know everything, but I know a lot about being a patient. I’ve spent my fair share of time in hospitals, clinics, ERs, procedure rooms, and recovery rooms. I’ve interacted with everyone from surgeons to nurses, CNAs, patient care techs, therapists of all kinds, pharmacists, and imaging technicians. I’ve been impacted both positively and negatively by all of them—no special credentials required.

I recall one early admission in the ICU. It was terrifying. They were listing me for my heart transplant while simultaneously trying to stabilize my erratic heartbeat. I was bewildered, scared, and miserable—and to top it off, my ICU room had no windows, no privacy, and no toilet. The cardiothoracic surgery team came to meet me. I don’t remember much from that meeting, but after everyone else left, one PA stayed behind. With tears in his eyes, he said, “What you’re going through is very scary. We’ll do everything we can to help.”

Another memory comes from a particularly rough pre-transplant clinic visit—perhaps when I was told my transplant listing would be paused while I underwent treatment for thyroid cancer. I broke down in tears. I’d been stoic until that moment, but everything spilled over. My fake eyelashes fell off. My nose ran. It was embarrassing. The doctor hugged me—a gesture unusual for physicians, at least in my experience. Then, that weekend, on her own time, she called to check in on me.

Even now, I sometimes dread my visits to the cardiac clinic. I occasionally leave feeling gaslit or hopeless. The clinic isn’t my favorite place. Yet, even there, I’ve noticed small acts that matter. A medical assistant compliments my outfits and tells me I look nice. That simple kindness motivates me to show up with a smile, to demonstrate that I am worth supporting.

I’ve had nurses hold my hand, patient care techs remember my name and greet me with a smile, echocardiogram techs treat me like a human being, and doctors treat me more like a friend than a body in a bed.

One of my favorite stories comes from a hospital stay while being treated for Lippy. I was trying to make the best of it, to find silver linings. There was a housekeeper who swept my floor almost every day. I could tell by the shine in his brown eyes beneath his mask that he was genuinely happy. Aaron, ever the conversation starter, asked where he was from. He paused, smiled, and shared his story.

He was a refugee from Eritrea in East Africa, who had spent 14 years in forced military service and 15 years in a refugee camp in Ethiopia before coming to America. He had lived in Seattle before settling in Salt Lake City. He had a wife and five beautiful children, proudly showing us photos. He bragged about his daughter, who had earned a scholarship to a local college.

Then, humbly and tenderly, he spoke of his son, whom he thanked God for before recounting how his son had become involved in a gang and tragically lost his life to senseless violence at a nearby trailhead. I remembered hearing about the incident in the news. My heart broke for him, this unassuming man.

“I do not judge,” he said. “I thank God; he was a gift.”

In that moment, this man—through his vulnerable authenticity—made me feel seen, valued, connected, and human again. And perhaps, in that connection, I found the medicine I truly needed to begin healing.

The lessons I take from these experiences are clear—and there are always lessons:

Never let adversity dim your light.
Never let your circumstances interfere with your ability to connect with another person or to act on what you feel called to do.
Life itself is the best course in kindness, the best training in compassion.
No credential is required to be a decent human.
And there is no gatekeeper to having a positive impact on someone’s life.

It’s not about titles or degrees. It’s about showing up, being present, and living with empathy. Any human can do that.

Mountains to Climb

If I’m being completely honest, I didn’t always like the person I became while I was waiting for a transplant.

In my defense, being told you need a heart transplant is a big deal. It’s not something you can immediately absorb or cope with. I needed every minute of my 18-month wait to begin adjusting. And even then—even now—it’s still a hard thing to wrap my mind around.

In April of 2022, I was sitting in church, pondering the words I was hearing. I don’t know whether it was spoken over the pulpit or whispered by the Spirit, but I distinctly heard this instruction: Ask the Lord what you need to strengthen, and He will tell you.

So that’s exactly what I did. As I sat in sacrament meeting that day, I prayed to know what I could work on—what I needed to improve.

The answer came clearly: patience and long-suffering.

A few short weeks later, those words would become something of a mantra—though often they felt more like a chastisement—as the transplant process truly began.

The transplant team, while hopeful and supportive of organ transplantation, was very clear about one thing: transplant is not a cure. It is, instead, a trade—one disease for another. At the time, I remember thinking, Well, it’s the only chance I’ve got, so let’s get on with it. I caught the enthusiasm quickly and felt anxious to move forward.

But nothing about this process was easy.

The wait ended up being far longer—and far harder—than I had hoped.

Though I thought of myself as a patient person, this trial taught me that the Lord truly knows us better than we know ourselves. Patience was something I deeply needed to develop. And as month after month passed, I felt myself becoming less patient and more self-pitying.

In December of 2022, while casually fixing my hair in the bathroom mirror, I noticed a new lump in my neck. I immediately suspected it was my thyroid. I took a picture and sent it to my sister, asking if she could see it or if I was being overly vigilant. She confirmed that she could definitely see the lump.

I didn’t waste any time trying to schedule an appointment with my primary care doctor—but she couldn’t see me until the end of January. Feeling that this was more urgent, I scheduled with another physician who had availability in early January. Even so, I still waited nearly a month to be seen.

To my dismay, that doctor dismissed my concern almost immediately. He didn’t perform a manual exam—he simply looked and said the lump was small. I explained that one of my medications was known to be toxic to the thyroid.

“Why would you say that?” he responded. “Surely if it were toxic, you wouldn’t be on it.”

I explained that both the prescribing physician and the pharmacist had warned me of its thyroid toxicity and advised frequent monitoring. In the end, I had to ask for labs and a thyroid ultrasound. I never returned to that doctor again.

In early February, I finally had the ultrasound. While my lab results were normal, the ultrasound was not. It revealed three nodules—one of which had concerning features and was classified as TIRADS 5, meaning highly suggestive of malignancy.

That same doctor emailed me the results and suggested I follow up in a year.

Do nothing and follow up in a year? Absolutely not.

When the transplant team learned of the findings, they expedited a referral to endocrinology. In March, I went to the Huntsman Cancer Institute to meet with a specialist. He explained that thyroid cancer is often slow-growing and highly treatable, and that the suspicious nodule was still small. He gave me the option to biopsy it—or not.

I explained that because I was on the transplant list, no transplant would happen if there was even a possibility of active cancer. We needed answers—and we needed them quickly.

Right there in the office, he performed a fine-needle aspiration. Under ultrasound guidance, he inserted a long needle through my neck and into the thyroid nodule, collecting several samples for pathology. All I received for pain was a shot of lidocaine.

Little did I know, this was something I would need to get used to as a heart transplant patient.

A week later, the doctor himself called me.

“I’m so sorry to have to tell you this,” he said, “but it is cancer.”

My transplant listing was immediately put on hold until the cancer could be successfully treated.

I cried—not because I was afraid of dying or even of cancer. Thyroid cancer, after all, is often referred to as “the good kind” because of its low mortality rate. I cried because I was exhausted. Because I was angry. Because this felt like one more blow on top of everything else.

I spiraled into the familiar Why me?

From where I stood, everyone else seemed to be living life on easy mode—vacations, goals, progress. Meanwhile, I was waiting for a heart transplant… and now dealing with cancer.

How was that fair?

And then I was reminded of the words in Ether 2:24:

“For behold, ye shall be as a whale in the midst of the sea; for the mountain waves shall dash upon you. Nevertheless, I will bring you up again out of the depths of the sea…”

Here was another opportunity for God to strengthen me. Another chance for Him to deliver me. Another moment to choose faith in the Savior.

I would get through this. I would climb this mountain too.

After all, you never shout for joy from the peak of a mountain you did not have to climb.