Tag: side-effects

Worthy of Saving

I was here, and then I was gone.

An entire month missing.

Don’t be alarmed. It’s not uncommon for me to lose all motivation during the winter and quietly quit everything for a while. And that’s exactly what I did.

Here’s what happened: I had constructed a picture in my mind of what life after my transplant would look like. After celebrating my two-year transplant anniversary in December, it became clear to me that the image I had painted was not going to come to fruition. That realization slowly deflated me. I lost motivation. And for a brief moment, I lost a little bit of hope.

It’s difficult for me to admit this, but maybe admitting it will help someone else. So I’ll set my pride aside and offer this confession: I thought my heart transplant would somehow make me stronger, faster, sharper, more inspiring—a more dynamic version of myself. For two years, I’ve pushed myself physically to gain strength, speed, and endurance—to no avail. I suspect age plays a role, along with a long list of medications and surgical side effects.

I’ve tried to broaden my understanding of the world through reading and learning, only to find that I now struggle with attention and memory. Again, I blame age and medication side effects. I’ve shared my story on social media and in front of audiences, yet I haven’t felt what I expected to feel in return.

At the end of the day, I am nothing more—and nothing less—than a middle-aged woman living in the American suburbs.

But that’s just it.

When I arrived at the hospital for my heart transplant, my surgeon’s objective was to save my middle-aged, suburban American life. He wasn’t attempting to turn me into a superhero. The goal wasn’t to make me bigger or better than I was before, but simply to extend the life I was already living.

That life was worthy of saving.

So why is it so difficult to accept that? Why do I still feel the need to justify my existence by being more than what I am, when “survivor” is already enough?

Perhaps it’s something ingrained in me—the quiet expectations of my upbringing, or messaging of a culture shaped by performance and visibility. We live in a world that celebrates dramatic comeback stories. Somewhere along the way, I absorbed the idea that survival alone is not a satisfying ending—that it must be accompanied by achievement or applause.

But beneath all of that noise, in a quieter and steadier place inside me, I know the truth: I am enough for now. Not because I’ve proven anything. Not because I’ve surpassed some imagined version of myself. But because I am here. Because this ordinary, middle-aged, suburban life was—and still is–worthy of being saved.

And maybe learning to believe that is the new goal.

Just so you know, I haven’t completely given up on my 5K goal. Not entirely. I’ve mastered something I call the “Kitchen 5K.” Most mornings, I put on my running shoes and jog in my kitchen—sometimes running small laps, sometimes just jogging place. It works up a sweat and gets my steps in.

Look, I’m doing what I can do for now. I’ll progress when and how I can.

. . .”Let us run with patience the race that is set before us,” the scriptures say. I’m learning to focus on what is set before me—what I have to work with and what I have to work on for now.

Pulling the Goalie

Recently, my husband and I were invited on a weekend trip to hike with friends in Arches National Park. Oh, how I had been looking forward to it! I love hiking almost as much as I love running—that toxic lover of mine. And to do it surrounded by my husband and friends felt like such a gift. We even managed to snag coveted permits for the Fiery Furnace, a maze of sandstone canyons with no marked trails.

Aaron and I made the four-hour drive to Moab almost giddy, ready for a much-needed getaway and some time outdoors before the holidays. We arrived as night fell, greeted our friends with enthusiasm and began making preparations for the next day. We were buzzing with excitement.

After a not particularly restful night, we woke early, divided into carpool groups and headed to the park. We wandered through the Fiery Furnace for hours, climbing over boulders and squeezing into narrow slot canyons, before I began to slow down. Even with peanut butter and honey Uncrustables and Reese’s peanut butter cups fueling me, my energy started to fade. My quads burned in a way that didn’t feel normal. I was more tired than usual and so, so thirsty.

Still, the conversation drifted toward the next hike and tomorrow’s plans. Which arch should we explore next? Who wants to see Delicate Arch?
Me, my heart shouted. I do!
But my mind countered with reason. I needed rest.

That night, as we gathered in the Airbnb swapping stories and playing games, a brutal migraine struck. The nausea, the pounding pain—it all hit at once. Ugh. Why now? By the time Aaron and I headed to bed, I knew I wouldn’t be able to join the group for their hikes the next day. Even though I understood it was the right choice for my body, the sadness settled in deep.

The next morning, Aaron and I made an early retreat and headed home. As we made the four-hour drive we listened to Malcolm Gladwell’s Revisionist History podcast where he talked about hockey. I don’t know anything about hockey. I don’t even like hockey; I’m in no way particularly interested in hockey. But what they were talking about caught my attention. Pulling the goalie. I’ll try explaining.

In hockey, when a team is down late in the game, the losing coach might pull his goalie  and substitute them with an extra attacker, so instead of having a full offensive team and a goalie, the coach now has six offensive players and no one guarding the net. It’s a risky move that, while making it easier for the other team to score, also increases the losing team’s chances of scoring a goal and tying the game. The coach is making a calculated risk. Pulling the goalie too early will undoubtedly upset the fans in the short term–possibly in the long term if things don’t go well. But if things play out the way the coach would like, well, then who’s the hero?

I’m the type of person who suffers from Fear of Missing Out (FOMO). When people gather, I want to be there. I want to share in the laugher, get in on the inside jokes, make all the memories. You see, as a child, I spent most of my time with just my sister as my companion and friend. Due to divorce, job changes, moving, and general upheaval, we found ourselves separated from family and frequently changing schools. While teaching me how to adapt and quickly make new friends, I also took on a fear of being left behind.

For three years—while I waited for a heart transplant and later recovered—I was, out of necessity, left out of get-togethers and girls’ trips. I watched friends and family travel and enjoy activities that felt so exciting, yet out of reach for me. From home, it all felt distant, and I often felt lonely and left behind. Even now, during our walks, my friends sometimes reminisce about jokes and stories from the trips they took while I was unable to leave the area. It’s no one’s fault, but hearing those memories still hurts in a quiet, complicated way. Since then, I’ve fought hard—both mentally and physically—to rejoin the world: joining groups, getting active again, going on walks, hikes, and weekends away.

Until I have to pull the goalie.

Another way to explain this—drawing on an example Malcolm Gladwell uses, without getting political—is through America’s gun laws. In many states, there is a legal principle called “Duty to Retreat,” which requires a person under attack to retreat safely, when possible, before resorting to deadly force in self-defense.

It feels counterintuitive, right? Your property, your safety, your family may be at risk—and you’re expected to back away? To rely on retreat as your defense? Yet research shows this is actually safer. In states where “Stand Your Ground” laws have replaced the Duty to Retreat principle, homicide rates have increased, according to Gladwell’s podcast. 

I cried when the migraine hit. I cried again when I realized my health wouldn’t let me join the group on another hike. More than anything, I wanted to stand my ground, take some pain medicine, and be right there with everyone in the national park the next day. But logic was the rule of the day. I needed to take the calculated risk of leaving–choosing my health and well-being over my social standing. I might miss the jokes, the memories, and maybe next time even the invitation. But if I stayed, the risk could be far greater.

After my transplant, I had a lot of expectations for myself–most of them centered on participating again. I wanted to run again, to race, to take classes and teach classes again, to join every activity that crossed my path. If people were doing something, I wanted to be right there with them. But life never unfolds the way we picture it. It unfolds the way it will. And so we adapt–something I’ve become very good at. Sometimes the wiser choice is that quiet, calculated retreat. Sometimes we have to pull the goalie. Stepping back isn’t failure. Sometimes it’s survival.

In the end, I’ll be better for having made the call. My friends will be there on Monday with another invitation–I know they will. Hopefully I’ll be well enough to join them. And if not, I have faith that the people who love me will always hold space for me, just as I hold space for them.

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.