Happy Heartiversary

On Sunday, December 14th we celebrated Annika's heartiversary. While I'd like to say that the first year post-transplant flew by, in some ways it feels like it lasted forever. Was there ever a life where we didn't think about hearts and meds and hydration and lab draws All The Time?  Feels like eons.

For months, we'd talked about wanting to do a service project on Annika's heartiversary to commemorate her donor. As we planned, nothing seemed significant enough to honor a gift so profound. In the end, we opted for something super simple instead. The day was already extremely busy as it coincided with Brooklyn's homecoming celebration following her 18-month mission to Spain. We decided to set up a table and paint rocks as a way to remember Annie's donor and celebrate their interconnected lives.

We gathered the rocks during walks through the foothills near our home.

This project worked out far better than I expected. The rock painting brought people together into a comfortable space where they could color and chat and simply enjoy one another's company. For me, organ donation is all about cherishing the small moments and holding those you love close. Whether you are on the giving or receiving end of a transplant, both life and time are precious.

Plus, rock painting is just fun!  There's something liberating about engaging in something creative. Some of us (myself included), haven't really painted since we were children. 

A rock is such a small canvas that it doesn't feel overwhelming. When the canvas is plucked off the ground, it removes the pressure of having to create something impressive. But even more, I love the connection with nature. It fits Annika's woodsy personality perfectly, plus it's pretty poignant on a meta-level as well. Created from the dust of the earth, each one of us will return to our Mother Earth as well.

Best of all, the results are just so cute and cheerful! Especially the gnomes and Snoopy.

Oh, and you can't forget the guinea pig.

Happy heartiversary, Annie! You are so loved.

To her donor and herdonor's family, thank you as well. As always, words fail to express all this second chance means. We love you and hold you close to our hearts, not just this day, but always.

No More Neuroses

I interrupt this Christmas photo fest to acknowledge my neuroses. While booking flights to New York seemed like a brilliant idea in August, come December I started to panic. Even though I was thrilled that Annika was technically allowed to travel beyond her four-hour travel radius, all of a sudden the reality of this trip seemed terrifying. Twelve of us would be traveling through busy airports to the biggest city in the U.S. where we would be gathering with even more people, many of whom also traveled to get there. Large outbreaks of influenza A were confirmed all over the United States, with New York naturally being a hot spot.

Truthfully, in some ways my concern was valid. How often can you gather as a large group for an entire week without anyone getting sick, particularly at the peak of respiratory season? In getting together for the holidays, most of us recognize that we are likely to bring home not only gifts, but some unwanted illness as well. If you are fortunate, you'll pass around a runny nose instead of a nasty stomach bug.

The problem is that I see the world through tainted eyes. Instead of being an expected inconvenience, common illnesses feel life-threatening. While no one likes the flu, in the world of heart transplant you meet formerly healthy people whose native hearts were attacked and destroyed by a virus. Yes, it's extremely uncommon, but statistics don't matter when fate's lottery picks you. And frankly, with Annika's heart being more susceptible, it scares the pants off me.

Norovirus--there's another one that sends my heart racing. It's miserable for everyone--extreme vomiting, diarrhea, stomach cramps--not to mention the fact that it's highly contagious and can live on surfaces for up to two weeks. But for a transplant patient, catching norovirus commonly lands you in the hospital. Not only is it harder for an immunosuppressed individual to fight off the virus, but between all of the vomiting and diarrhea, you can't keep your medications down. And if. you can't absorb your meds, there is a frighteningly high risk of rejection.

And so, arriving in New York, I was admittedly neurotic. I apologize for my anxiety over life's normal coughs and sniffles. I ordered masks and cleaned surfaces like a crazy woman. When rumors of norovirus went around, I replaced all of the bathroom hand towels with paper towels that I stole from my aunt's pantry. (Thanks for humoring me, Aunt Janet!) Everyone was tolerant of my behavior, but seriously, I must have been so annoying to hang around. Plus, I really missed getting to see our cousin Greg after he got sick. He was so considerate and social distanced, but it must have been a bummer to have us changing the vibe.

Remember the early days of the pandemic when we were terrified of, well, everything? That's kind of what transplant life feels like. Everything is a threat. That person could be sick, that air could be tainted, that meat could be undercooked, that lake might have dangerous bacteria, that dirt could carry fungi--the list goes on and on. Heck, even the sun is more likely to give you cancer.

I'm tired of feeling like this. I need to get over my anxiety.  It's hard, but I'm trying.  I meet with a therapist. I've adopted a "live life" philosophy. Going to New York may have been frightening, but we still went. We hopped on an airplane. We boarded the train and rode the subway and shuffled our way through enormous crowds. And it turned out great! 

Even though it scares me, I still send Annika to public school where she sits next to kids who most certainly have colds. I'd like to say she does a great job with hand hygiene, but the truth is that she doesn't, nor does she wear a mask. Instead, she is out in the community living her best life and loving it. Frankly, she doesn't seem the slightest bit concerned. While I'm worrying about her heart, she's moved on to her current obsessions with spiders and wolves and boys named Steven.

I'm grateful that anxiety doesn't seem to weigh Annie down. Now it's time for me to let go of the worry as well. Worry solves nothing. As much as I'd like to control the future, it's out of my hands. Plus, most of the time I get anxious for naught. Life has a way of working itself out all on its own. Miraculously, out of the 12 people from Utah who traveled to New York, no one got sick while we were there. That's incredible. Instead, we had a marvelous time and connected with family that we adore. None of my worst fears came true, but even if they had, we would have figured it out. Moving into the new year, I want to focus on joy in the moment instead of fear for the future. God is at the helm--I know it. So no more neuroses.

Sharing the Road

This week we've been praying for a family we met over social media whose beautiful daughter has a heart story that is similar to Annika's. This September her heart unexpectedly stopped while running track during sixth grade PE. Like Annika she was saved by CPR, and like Annika she needed a transplant. On Saturday she received her special gift.

While technically strangers, I feel a deep connection with this sweet family. There is a unique bond created by sharing an experience so extraordinary that you feel like no one has walked this road before, only to discover that you are not alone.

Instead, I'm learning that this path is traveled more frequently than I realized. This very same week, our neighbor's 21 year-old nephew collapsed in cardiac arrest while shopping at our local Walmart. CPR, ICU, ICD, cardiomyopathy--the journey feels so familiar. We are praying for this family too.

Revisiting this heart trail, I am mindful to tread carefully. As a quiet observer, I recognize that these stories are not our own. While I may recognize some of the cairns, the markers, both horrendous and hopeful, are not ours. This is their journey. And yet it still hits hard.

On Saturday I found myself feeling withdrawn and weepy, just as I felt on that December Saturday a year ago when Annika was transplanted. My own heart panicked as I read how their girl's transplanted heart struggled during those initial terrifying hours. I recalled how much Annika's heart struggled during those first days. I can't help but feel like these transplanted hearts carry memories and a will of their own. I remember that it took time before it felt like Annika's transplanted heart finally accepted and became comfortable in its new home.

I've fallen to my knees in gratitude after learning that all of these hearts are doing better. I'm glad to know that even though we've never met, Annika has a heart friend in Texas. I hope that some day we can connect both there and with this young man here in Salt Lake. I can't make the trail less steep, but sometimes it helps to know that you're not climbing this mountain alone.  As a wise friend who likewise traveled this road once told me, There's Always Hope.