Transplant in Numbers

It's hard to believe that it's been more than a year since Annika's heart transplant (15 months and 11 days to be precise.) It's been over three years since we started this heart journey. (39 months and 3 days if you really want to know.)

I guess that sums it up right there. For a gal who honest-to-gosh recently asked an app to calculate my age,  it's pretty ridiculous that I could whip out those time frames without any mental struggle. It kind of feels like I should be able to "get over it" and move on, but the truth is that I still think about Annika's heart constantly. Obsessively. Probably unhealthily.

The heavy truth is that once you've been through such significant medical trauma, it is exceptionally difficult to stop being on high alert. Even when the immediate threat is gone, your body still floods with cortisol. Logically I know Annika is doing remarkably well, but worry cozies up right next to gratitude. My heart beats hope laced with fear.

I am ready to re-claim my identity as more than a medical Mom. As part of my effort to both declutter and de-medicalize our lives, I've decided to scan and then get rid of two enormous binders of insurance statements and bills that we have collected over the past few years. Here's a photo of the first binder. Binder #2 is just as impressive.

I'm digitizing them as part of our family history, but I don't need to keep these massive physical reminders perched beside my bed each night.

Before letting this physical record go, I made a giant spreadsheet and categorized the 491 medical statements. Digging into this record has helped me better understand and appreciate Annika's journey. Honestly, it's helped validate my rather overwhelming feelings as well. No wonder I feel messed up! It's been a lot. I'm giving myself more grace. It's okay if it takes significant time to process and heal.

Most of all, in revisiting these records, I am astonished by Annika's bravery and courage. In a few short years, she has been through more than most of us will endure in a lifetime. Ever resilient, she handles it all with strength and humor. If I need a guide to help me move on, Annika can lead the way.

So with all that, here are the binders in numbers. Between 2022-2025, our warrior Annika faced:

• 5 days on ECMO
• 54 days in the hospital
• 2 Life Flights (Billed as an "Air Ambulance")
• 6 Emergency Department Visits, including one resuscitation
• 45 Echocardiograms
• 19 EKGs (electrocardiograms)
• 3 MRIs
• 10 ICD interrogations
• 3 rounds IV Immunglobulin therapy
• 3 rounds of injections to treat keloid scarring
• 2 rounds filgrastim for low neutrophil counts
• 2 Exercise stress tests
• 3 Pulmonary Function tests
• 1 Blood transfusion
• 46 lab draws (the actual count is higher because that doesn't include many of the inpatient labs) 
• 22 surgical procedures, including a heart transplant!

As Brooklyn might say, Annika, you're a legend! You've gone from being terrified of lab draws to telling jokes with the phlebotomists. You know how to advocate for yourself (Buzzy please), but you do so with respect. Most importantly, you are taking wonderful care of your special heart. With each appointment and lab you honor the life of your donor. We are proud of you, Cheesecake!

Annika may be legendary, but the medical bills are too. I tallied up all the billed costs and came up with the grand sum of $2,367,380 plus change. Wowzers. Also, just in case you are curious, the largest single bill was for $832,930. This conglomerate bill from Primary Children's included subcharges for sundry services, including "cadaver heart acquisition." Sometimes life feels surreal.

These giant medical binders, meticulously organized by date, helped me grapple with a situation that felt so scary and completely out of my control.  While these binders  may harbor hardship and fear, they shelter even greater feelings of gratitude. The pages are littered with the names of so many caregivers who saved our child. I see the names of our transplant team: Doctors Lal, May, Milligan, Kalb, Chen, Molina, and Etheridge. I discovered that Dr. Ploutz was there on Christmas Day 2022. I have very scattered memories of this time on ECMO and don't recall meeting her, but it means a lot to know she was there. There are beloved ICU doctors like Dr. Goldstein and favorite anesthesiologists like Dr. Christensen. There are those who have helped Annika navigate her journey emotionally, like Dr. Christina Suorsa-Johnson, and our PCPs, Dr. Sharon Schriewer and Dr, Lisa Samson-Fang. Even more humbling are the dozens of names we don't recognize, representing hundreds of people whose names don't appear but who still played a part in saving our daughter. Echo techs, xray techs, phlebotomists, pharmacists, respiratory therapists, music therapists, physical therapists, child life, dietary services, environmental services, advanced practiced providers, not to mention Every. Single. Nurse.  The list goes on an on.

Before signing off, I wanted to break down one category--those 22 surgeries. We have so much gratitude for each surgeon who returned our daughter safely to us.

12/23/2022	Skarda	ECMO Cannulation. This initial crash onto ECMO was a last ditch effort to stabilize Annika's deadly arrhythmias.
12/24/2022	Russell	ECMO Cannulation. The next day they had to add a second venous return into her jugular to help balance out the arterial and venous blood flow.
12/24/2022	Martin	Atrial Septostomy and Heart Catheterization. Our neighbor MaryHunt Martin performed Annika's first heart cath and put a hole between her atria to balance out the pressures.
12/26/2022	Skarda	ECMO Cannulation. When blood clots started to form in Annika's ECMO circuitry, they decided to replace the tubing so that the clots wouldn't break off and cause a stroke or DVT. In the end, the clots broke off anyway, but fortunately Annika's brain was saved.
12/28/2022	Barnhart	ECMO Decannulation and arterial blood clot removal. Apparently those blood clots headed to her leg since they discovered them during decannulation and fished them out of her femoral artery.
1/3/2023	Niu	Implantable Cardioverter Defibrillator Placement. Our electrophysiologist Mary Niu placed an ICD to shock Annika's heart if it went into a dangerous arrhythmia.
1/3/2023	Gray	ASD Closure. As Annika's heart pressures stabilized, Dr. Gray went in and surgically repaired the ASD (hole between the atria) that MaryHunt created on Christmas Eve
3/30/2023	Park	Bronchoscopy, Laryngoscopy and dilatation. Our ENT Dr. Park went in and surgically excised granulation tissue that had built up in Annika's airway following her emergency resuscitations.
4/27/2023	Park	Follow up Bronchoscopy. Because the airway is so critical, Dr. Park followed up the initial excision and balloon dilatation with two more bronchoscopies to make sure that the granulation tissue didn't return.
12/15/2023	Park	Bronchoscopy/Laryngoscopy. This final bronchoscopy gave the all-clear that Annika's airway looked good.
12/15/2023	Martin	Heart Catheterization. On that same day, MaryHunt performed Annika's second heart cath to see where her heart was trending.
12/15/2023	Niu	Place new ICD. While Annika was under anesthesia, Dr. Niu replaced Annika's ICD with a different model that included both atrial and ventricular leads to allow for more natural pacing of the heart. This upgraded ICD would end up saving Annika's life twice.
11/22/2024	Martin	Place CardioMEMS device. During her third encounter with Annika's heart, Dr. Martin placed a CardioMEMS device that can track the pressures in Annika's pulmonary arteries in real time, sending transmissions back to the hospital.
12/14/2024	Griffiths	Heart Transplant (Harvest). This one is so hard. It's also not Annika's surgery, even though we received the bill (and rightfully so.). Dr. Eric Griffiths was the surgeon who removed the heart from Annika's donor and flew it back to Primary Children's. There are no words for our gratitude, just as there are no words for the sorrow.
12/14/2024	Hobbs	Heart Transplant. This is the hopeful side of transplant. Dr. Reilly Hobbs performed Annika's heart transplant and removed her ICD. What do you say to the man who has literally held your child's beating heart in his hands? Yet again, there are no words.
12/17/2024	Eckhauser	Mediastinal Washout. Annika met a third transplant surgeon when she suddenly lost huge amounts of blood out of her chest tube several days post surgery. Dr. Eckhauser raced in to open her up for a "chest exploration" right at the ICU bedside as a Massive Transfusion Protocol was called over the hospital speakers.
12/17/2024	Hobbs	Mediastinal Washout. Even though he was technically in another surgery, Dr. Hobbs popped in during this emergency procedure to assist. I imagine he was nearly as grateful as we were that all ended well.
12/27/2024	Bloom	Heart Cath and Biopsy--2 weeks--Low levels of Class 1 Antibodies detected.
1/13/2025	Bloom	Heart Cath and Biopsy--4 weeks
1/30/2025	Boucek	Heart Cath and Biopsy--6 weeks
3/14/2025	Martin	Heart Cath and Biopsy--12 weeks--Low levels of Class 2 DSA Antibodies detected. Prompted IVIG therapy.
6/11/2025	Bloom	Heart Cath and biopsy--6 months
8/4/2025	Cohen	Small bowel endoscopy--attempting to understand the cause of Annika's abdominal pain.
12/15/2025	Martin	Heart Cath and Biopsy--1 year. True confessions--we adjusted the date just so that we could see MaryHunt again. I know she's everyone's favorite, but I feel like we get dibs since we loved her long before we knew how phenomenal her professional skills.

Annika, you really are a rock star! I hope you feel proud of all you have faced with courage and a smile. In the year following your transplant, I counted 99 days where you received some sort of medical care. Miss Annika, that's a lot of appointments and labs! Yet through it all, you rarely complain, especially when promised grapefruit gelato.  (We love the hospital gelato because their grapefruit flavoring is artificial and CYP3 safe. IYKYK.) Annika, you are remarkable! Thanks for sharing your light and special heart with world.

Waving from the Wave

I sent this message to Annika's cardiology team yesterday and though I would share here: 

"So half an hour ago Annika and I were chatting on our way out of the U of U Hospital when I said, "Hey, did you see some of your heart team at Starbucks?" She replied that she didn't notice and then continued on, "Mom. why didn't you say Hi? Do you have social anxiety?" 

Well, I guess I've been called out on the carpet!  We absolutely should have come over to say hello. I think I figured that you deserved a few moments without patients. Also, I was feeling kind of sheepish that we were hanging out at the hospital. In our defense, we tried two other Starbucks on the way home from school, but they were both closed. Undeterred, Annika insisted we try the hospital before giving up. When you've got a craving, you've got a craving! 

Mostly, I wanted to take a moment to thank the entire team for giving us a world full of happy every-day moments like grabbing Starbucks as a Mommy-daughter date. We treasure all these tiny memories in ways that we once took for granted.

Naturally, we relish all the big moments too. After years of trying to get a permit, our family was finally able to hike "The Wave" near Kanab. Here's a photo of Annika sprinting across the natural wonder. She handled our nine-mile hike with ease. It seems this girl has won the lottery more than once in her life! 

Thank you all for supporting us through this heart journey. I know her transplant success is the result of years of your hard work, training, and science. Even so, to us it is also a miracle.

Until our next Starbucks sighting,

Kara"

Whether waving from the wave or a coffee shop, we really are thankful for all of life's joyful moments.

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.

First Period

Last night Annika started her first period. We are staying at my Aunt Janet's home with a horde of women: my two teenage daughters, my cousins, my sister, my mother--and apparently everyone started to sync up. Annika's body must have wanted to join in the fun because I suddenly heard her holler from the bathroom, "Moooommmmmmm! Mom! Mom! I need you!" I immediately knew what was going on--as did the entire house. Not shy at all, Annie wasn't embarrassed in the slightest. If anything, she became extremely chatty and hyper. She was so ramped up that she couldn't sleep and eventually crawled into bed with Jason and me for the rest of the night. Growing up is such a strange space--officially a woman, yet still wanting to snuggle with her parents. 

I was the same age when my first period came; I would have been mortified to have my mother tell another soul. Even though my home was predominantly female, it felt dirty, secretive and shameful on a societal level. Fortunately we live in a different era where periods are openly acknowledged and discussed. While they still might feel a little scary or gross, my hope is that the shame and secrecy are less. Working as a Labor and Delivery nurse has certainly helped me feel more comfortable talking with my children about our amazing bodies in a positive way.

Is it strange that our culture doesn't have coming-of-age rituals to recognize or celebrate these transitions? Perhaps we ought. With Annika's special heart, I've given more thought to what a period really means. A period represents the continuation of life. Her body is showing us that it is thriving--healthy and strong and whole. For us, nothing is promised. Annika was just a girl when her heart first stopped. There were moments when we didn't know if she would ever make it to puberty. Now, thanks to her donor, she can join all of her girlfriends in conversations about cramps and pads and period undies.

It feels so...normal. There aren't many peers who can relate in a conversation about her tacro tremor or everolimus mouth sores. This time as her body changes, she can be welcomed by a sisterhood who acknowledges the discomfort and pain as healthy and productive. Periods may suck, but on some level they are also wonderful--only through them does new life come into this world.

But as is so often the case with transplant, the story becomes fiercely tangled. For Annika, childbirth is very complicated. Even if Annika could bear a child, should she? Would she pass on her TNNT2 gene variation, resulting in cardiac problems for her children? Would the strain of pregnancy and childbirth be too much for her transplanted heart? What about the risk of rejection? Given her lower auto-immune threshold, would her body reject a fetus as foreign? What about her transplant medications? Some are known to be extremely harmful in pregnancy. And even if Annika and her child both made it through childbirth safely, what then? The future is uncertain for all of us, but for Annie the grasp is tenuous. Before she was transplanted, her team was very clear that transplanted hearts for her age group last an average of 10 years. If Annika were to have a child, she would already be running on borrowed time. Is it ethical to have children knowing that you might not be around to raise them?

Most of the time I push aside these harsh thoughts by focusing on the miracle of Annika's current health. Writing this, however, brings me to tears. Annika used to tell us how she wanted twelve children. It breaks my heart to realize that she may never any, at least in this lifetime. 

That first tentative smear of blood, full of both promise and pain. The hope of life and tears of an empty womb. Annie's first period.

Be Near Me

Happy Winter Solstice! It's December 21st, a day to cozy up by the fireplace with a mug of hot chocolate, finding contentment in the dark as we feel grateful for the light. While the darkest day of the year here in the northern hemisphere, I feel comfort in knowing that from here the days will gradually grow brighter.

Over the past couple of weeks I've struggled to feel inner peace and contentment.  All of the anniversaries have hit harder than I anticipated. Joining Eli at his robotics competition on December 13th, I kept thinking about how I couldn't be there last year because Annika was in surgery having her heart replaced. I wondered what it was like for him in 2024, fiddling with robots like the world was normal, even as his little sister was being kept alive by a heart-lung machine. This year was so different as she came to support Eli (his robot won!), literally running laps around the school when she got bored.

I had a similar experience yesterday when I went to pick up a prescription at Primary Children's. It was a Saturday morning and I could see two families gathered around tables in the lobby. I could sense that the emotions were tense at one of the tables where the mother was absent-mindedly fidgeting with her necklace, her mind lost in deep thought. I instantly recalled the December Saturday where we waited for Annika's heart at that same table in that same lobby. Stranded in a strange space where we'd been booted from our room on the floor but without a room in the ICU, we gathered there and waited and paced and prayed. I wanted to hug that Mom and tell her that everything will be okay. But in truth, how can we know? If you step back and look with a long-enough lens, everything will indeed be okay. But here and now, there is sorrow and struggle aplenty.

For Annika's December 14th "heartiversary" we collected rocks from the foothills and decorated them with colorful pictures and messages. It's not a lot, but we wanted to share the love of her donor and their family in some small way. I hope the rocks make someone happy. Collecting and painting them has been therapeutic in its own way. In fact, yesterday I gathered more stones so that we can continue the tradition in remembrance all year round.

Each time I light a candle I think of Annika's donor. This time of year, our home has been FULL of candles. I acquired a new Advent wreath for our family, and my favorite time of day is in the evening when I light the candles, turn on the Christmas tree, dim the lights, and just take a moment to reflect.

There is so very much to think about. I reflect on the joy I felt the morning after Brooklyn came home when we all gathered at the dining room table and there were no empty chairs. My eyes filled with tears as our family finally felt complete and whole. My heart overflowed with joy, even as it remembered and held space for so many other families who are mourning empty chairs this Christmas season. Hearts are miraculous organs; those four little chambers hold love and light and life and loss all at the same time,

Faith carries me through these times. I am grateful for the assurance that we can be reunited after this life, and in heaven there will be no empty chairs nor broken hearts. This season I am reflecting more fervently on Jesus Christ as my Savior and Redeemer.  In Away in a Manger we sing, "Be near me, Lord Jesus." But in The Chosen, it is Jesus who pleads with his disciples as he enters the Garden of Gethsemane: "Be Near Me." Be near me, O Kara, I ask you to stay close by me forever, and love me, I pray.  "And my free spirit cried, I will."

More than anything else, I believe Jesus wants us to come to him and accept his gift, as so beautifully encouraged in this year's Christmas devotional.  This language "accept" feels particularly poignant in the context of transplant. When someone is listed for transplant, they may "receive an offer" of an organ. The transplant team then evaluates the heart to determine if it is a good match, considering size, health of the heart, health of the individual, risk factors, age, blood type, antibodies, etc. If the match seems favorable, the team will "accept," but it's challenging for all those stars to align. We know that Annika's transplant team turned down multiple offers before accepting her current heart. It's a good match, but like any transplant, it's not perfect.

Jesus Christ's offering is perfect. His heart is without flaw, and he has already died so that we may live. Will we accept his gift? He is the Light of the World, bringing hope in the very darkest of seasons. The rock of salvation, he is ever present with his arms outstretched to comfort us in the moments when we are scared or discouraged or anxious or alone. He wants us to look unto him and live. But when I pray "Be near me, Lord Jesus," it is I who must rise and draw close.