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.