When Life's Not Fair

Not much to update in terms of Annika's cardiac world. I know that's a good thing, and we are so very grateful. Her next cardiac cath and biopsy won't take place until January--we pushed the date back a little to try and consolidate medical costs. Physically, the only real concern we have right now is her keloid scarring. It's super gnarly, and insurance is giving us a hard time about covering dermatology at Primary Children's. It's hard to show a picture without it being indecent, but this one from her chest incision gives an idea. There's similar scarring from her ICD, as well as substantial scarring near her groin from the ECMO cannulas and a big "button" on her belly from the chest tube. Just one glance and it's pretty obcious that these scars aren't just cosmetic.

In terms of mental health, I think things have been harder for Annika. Being a 13 year-old girl is hard. Being in middle-school is hard. Functioning with ADHD is super hard. Now add to that the trauma of experiencing a heart transplant at such a pivotal age. I don't know that any of us can really understand what she's going through. Heck, I don't even think she understands what she's going through. But whatever it is, it's a lot. The emotions can be overwhelming at times--there's so much anger bubbling beneath the surface. She suppresses it pretty well at school, but at home it explodes.  Annika's therapist through PCH (Dr. Kristina) mentioned that for kids, it's common for depression to look more like rage than sadness. Whether it's depression or anxiety or just teen hormones, it's hard to watch Annika ride this intense emotional roller coaster. No matter what, we want her to know that we are here for her and love her.

Even though this transplant was medically necessary for Annika to survive, it's been challenging for her to recognize how very sick she was.  As a minor, she didn't have a lot of autonomy or say in the decision. There are moments where she feels like this was done "to" her instead of "for" her. She's talked about wishing she never had a transplant. That's fair. After all, the whole thing is totally unfair. It's not really equitable that her body should be covered in scars and her life meted out in med doses while her peers rarely think about their hearts.

It's also not fair that Annika's transplant journey should be straightforward while some of her transplant peers are being forced to battle so much harder. Our friend Allie is facing severe transplant rejection and Camilo is back in the hospital with sick lungs. That's not fair either.

Most poignantly, it's not fair that her donor's life ended so abruptly. My heart still aches every time I remember.

The grief is popping up much more frequently now that we are rounding the corner toward Christmas. December 14th--transplant day. The day we celebrated hope for life while another family grieved their loss. December 23rd--the day Annika's heart stopped and our lives turned upside down. November 20th--the day I prayed and asked God if a transplant was absolutely necessary. November 21st--the day my prayer was uncomfortably answered as her heart stopped again. Both God and her medical team answered yes, we were running out of time.

Life isn't fair. And life isn't easy. But life is still good. We choose to move forward with hope. We are currently in the process of planning our Wheeler family Christmas. This seems like it should be joyful, but the truth is that I feel a bit anxious about it. Jason, Annika and I haven't celebrated Christmas day with the Wheelers since 2018! In 2020 Eli got Covid, 2022 Annika was on ECMO and 2024 was transplant. Here we are at 2026 and I'm feeling so jittery and superstitious that something will happen. Do I really think God organizes the universe to disrupt our holiday plans? Probably not. But still, we feel what we feel.

Despite the anxiety, what I mostly feel is grateful. I'm grateful Annika is so stable. I'm grateful for the supportive network of family and friends that have carried us through hard times, year after year. I'm even more grateful for all the people who continue to support Annika every day, even when she is a little teenage angsty. I'm so thankful for her donor and their family--their gift means everything. And is it okay to say be vulnerable and say that in a weird way, I'm even a little thankful that we haven't connected quite yet? I'm beginning to better understand why the transplant social worker encouraged us to take time. Honestly, I don't think Annika would be in the very best place to meet her donor's family at this very moment. Just figuring out her own identity and who she is and who she wants to be is pretty challenging. I don't know if her donor family will ever want to connect, but my prayer is that if they do, Annika will be feeling grounded enough to express the love she has for her very special heart.

Cardiac Transplant Celebration and Walking Free

True confessions. Ever since Annika's cardiac arrest in 2022, I've been obsessed with hearts. For pretty obvious reasons, my passion for cardiology soon melded with a fixation on transplant. So when Annika received an invitation to the U.T.A.H. Cardiac Transplant Program 40th Anniversary Celebration, I was pretty excited to tag-along as an extra.

 

Also, I thought it was snazzy that the event was being held at the Capitol. In the ten years I've lived in Salt Lake, I'd never actually gone inside. Crazy since we live so close!

Annika was not thrilled that I made her wear a dress, but finally capitulated. 

When we arrived, the place was packed with a giant line to check-in. It was super loud with no place to sit--especially tricky when you're holding plates of food.. Here's a photo Jason took much later after things settled down.

On the positive side, the Capitol certainly is beautiful.

As soon as we figured out it was an option, we headed to the outdoor patio where there were tents and TVs set up to broadcast the program. So much nicer!

The program was meaningful for Jason and myself. The keynote speaker was Dr. Dale Renlund. I had no idea that prior to being called as an apostle, Elder Renlund was the medical director for the U.T.A.H. cardiac transplant program for nearly 20 years. I enjoyed learning about the consortium of Utah Transplantation Affiliated Hospitals, and marveled that there are four transplant hospitals located within 20 minutes of our home (University of Utah, Intermountain Medical Center, Primary Children's and the VA.) I cried when a mother representing Donor Connect talked about her daughter who passed away at the age of three, then invited the boy who had her daughter's heart to join her on stage.  I applauded the fourteen year-old girl who talked about living her new life with positivity instead of mourning the life that could have been. And of course, we recognized the work of all the medical teams who make transplant possible.

As a transplant recipient, Annika plays a critical role--the program exists to help patients like her. So she added her piece to the puzzle.

Annika's puzzle piece was marked with her name and a transplant number.  There have been more than 2000 hearts transplanted since Utah's first heart transplant 40 years ago. Her transplant was so recent that I rather doubt hers was number 1426 chronologically, but I'll ask at her next appointment.

We talked to a man who told us that transplant recipients generally know their number. 

Not Annika. 

As it turns out, she doesn't want to be identified by a number or her status as a transplant recipient. While she enjoyed getting to see a few familiar faces from Primary Children's, in general these were not her people. Within fifteen minutes, she was asking to leave. So after some obligatory small talk and listening to the keynote speaker,  Jason and I gave her permission to walk home.

While naturally we would have loved to have Annika join us the whole time, I also felt a smidge of pride when she left. I am indescribably grateful that she is healthy enough to walk the 2.5 uphill miles home. Before transplant, walking a block was questionable.

So if Annika decides to take off walking and leave her transplant identity behind, that's just fine. Obviously it's something that she can never fully shed (hello meds), but it doesn't have to define her. Frankly, I'm glad that she doesn't share my obsession with hearts. In no way does this diminish her gift or mean that we are less grateful for her donor. It's my hope that her donor lived each day fully, rarely thinking about the miraculously pump insode of them. Their gift is allowing Annika to live life similarly, shedding the world of cardiology to walk free and and enjoy the sunset

Heart Reflections

Annika's cardiac journey has been blessedly uneventful lately. She is feeling fantastic, and even had the chance to attend five (!) different overnight camps this summer. Two were heart camps: Camp Hawkins in Toelle, organized by our amazing local Intermountain Healing Hearts foundation and Roundup River Ranch, funded by the Paul Newman Foundation. Then there was Girl Scout Camp at Camp Cloud Rim, our stake Girls Camp in Heber, and finally Brighton Girls Camp--she comes home this morning. I can't tell you how much I miss her! I am also ever so grateful to all of the staff and volunteers who have helped make certain that she gets her medications on time every day. The first-aid helper at Brighton sends me a text twice a day letting me know that Annika has had her meds--it means the world! When Annika was at Camp Cloud Rim, I got a call from the camp nurse letting me know that she was short a few doses of mycophenolate (my bad for miscounting), so I immediately hopped in the car for a drug drop-off. If raising a child takes a village, raising a heart warrior requires an army.

While not necessarily difficult, managing all of Annika's medications is still a heavy lift because of the import. Meds have to be taken on time, every day, no matter what. This requires being on top of refills, sorting meds, and understanding correct doses and med purposes. Here I am refilling the med box in Spain. (I mixed them all together to save space.) Believe it or not, I've played with her meds enough that I easily know what each pill is for and when she takes it.

This is a week's worth. Just for the record, we have her critical anti-rejection meds that keep her immune system from rejecting her heart: tacrolimus (2.5mg--dosage varies depending on levels detected in her blood) and mycophenolate (540mg--weight based dosing). Then there is atorvastatin to help prevent any hardening of her coronary arteries and baby aspirin to prevent any blood clots, particularly surrounding the cardiomems device that lives in her pulmonary artery. This pile of pills also contains lasix to drain off any excess fluid and keep her pulmonary pressures down. Fortunately Annika was able to drop the lasix recently--hopefully the change lasts. Then we have Vitamin D and magnesium supplements, although the magnesium serves an additional purpose of helping her sleep, as does her clonidine. 

So yeah! That's a lot of drugs. We keep extra doses stashed in all sorts of random places like my parent's home, backpacks, and cars, just to make sure that we never run short in a moment we need them. We also live by alarms, although frankly I usually remember right before the alarm even goes off. Meds have become second nature to us all. Annika is amazing and swallows them all in one gulp.

Keeping all of the transplant "rules" can be difficult, especially since many of them are kind of wishy-washy, like bodies of water. The recommendations definitely shift depending on your transplant center. For example, we were told that hot tubs are a firm no-go, but apparently there are other centers where they are approved.  As a family, we occasionally flex some rules (like allowing Annika to hike the Narrows with us), but when it comes to medications, we don't mess around. We are fully committed to taking them and taking them on time. 

In truth, I wanted to be med perfect. Zero doses missed, EVER. Unfortunately, it didn't happen. I'm fairly certain that Annika missed a dose the morning of August 6th. Not that we forgot--Jason and I were both at work making phone calls and sending all sorts of texts about it. We finally got ahold of our exchange student who asked Annika to take her meds. Truthfully, I think Annika thought she did. But she's easily distracted with ADHD, so when I got home 10 hours later, the dose was still in the med box.

Ugh. As upset as I felt, there was nothing to be done at this point. In the end, I found solace in the fact that we made it 600 days without missing a dose. That's 1200 doses of medication taken on time.  While we are not perfect and never will be, we really are doing our very best to take care of her special shared heart.

As long as I'm playing with numbers, Annika takes about 18 individual pills ever day, although it used to be substantially more. If I had to guess, she's swallowed an impressive 25,000 pills since transplant. 

I also did some research today to find out how likely it is that a child will receive a heart transplant. I've been following the online pediatric heart transplant community pretty closely, to the point where this obsession has become unhealthy. It's felt like everyone either needs or has had a transplant. Fortunately, that is far from the truth. According to AI, there are around 600 pediatric heart transplants performed globally every year. Divide that by the world's population of approximately 2 billion children, and that means that a child's likelihood of receiving a heart transplant in any given year is around 1 in 3 million. 

Researching this statistic was also extremely humbling. I learned that the vast majority of pediatric heart transplants occur within the United States (450-500 annually.) This means that a child's likelihood of receiving a heart transplant in the United States is much higher (around 1:160,000) given our population of 73 million children. Had Annika been born elsewhere in the world, it seems pretty unlikely that she would have had this second chance at life. Over and over we see God's divine hand blessing and rescuing her. 

So in those moments when our teenage gal is a little extra sassy, I'm grateful that she's here with us. Even more, I am grateful to her donor and her donor family. There's been a lot of really awful negative press surrounding organ donation lately. My heart breaks for everyone involved. I believe there should be accountability for every instance where there have been abuses or patient safety failures surrounding organ procurement. I believe that organ donation requires full transparency, informed consent, and above all, the deepest levels of respect. This includes respecting the right to accept or decline donation.

At the same time I also believe in organ donation. I see the faces of so many children living in the hospital, sometimes for years, as they wait for their gift of life. I especially remember one adorable curly-haired girl with dark lashes that we met at Primary's. In the end, she waited for more than 30 months for her heart. Imagine that--spring turns to summer turns to fall turns to winter turns back to spring, and you still are confined to hospital walls. Multiple birthdays, Christmases, Halloweens, Fourths of July, spent gazing out a hospital window. Yes, child life does their best to bring cheer, but it's still not the same. Families are divided as they struggle to care for children at home while caring for their child at the hospital. Transplant centers are often many hours away, with parents trying to swap childcare, juggle jobs, and keep insurance. Meanwhile, these sick hearts continue to decline, often to the point where kids need a Ventricular Assist Device or Berlin heart that pumps for them from outside their tiny bodies. It is so hard. And frankly, it is getting harder. Waitlist times are growing longer, I believe in part because of the overall deep distrust we have of societal institutions.

So while I firmly hold to my belief that any abuse of the organ procurement system should never be tolerated, I also want to share the blessing and miracle of organ donation. A large part of the reason Annika is doing so well today is because she didn't have to wait so long. Her donor family gave selflessly in their darkest moment, giving us light and hope. 

I just searched my phone for the most recent pic I took of Annika and this is what I found.

Thanks to organ donation, she's just another kid standing in line to board the bus to go to camp. Not a heart kid--just a kid. She's not thinking about meds or surgeries or chest pain, she's thinking about all the fun she's going to have with her cousin and friends and feeling the normal pre-camp jitters. She's living life--fully and beautifully here in the present becuase of a heart that has been shared with love.

Joy

This May we did a thing. The day after Eli finished his AP Testing, we pulled him and Annika out of school for the rest of the year and headed to Spain. We wanted to experience Brooklyn's mission area before Talia began her mission on June 3rd. Mostly, I was so excited to spend time as an entire family before heading our separate ways again.

As anticipated, Jason and I took a bazillion photos. I really don't know how to pare them down into a shareable quantity. While browsing through some of them today, I came across a series and thought--This.  This is why we traveled so far and invested so many resources to make it happen.  The moments of connection. I feel such joy to be a family--silly and imperfect and crazy and complete.

We don't have to travel overseas to experience this connection. It does, however, require intentional presence and prioritization. Having come so close to losing Annika, having said good-bye to Brooklyn for 18 months, preparing to say good-bye to Talia in a few days, I no longer take these moments for granted.

Each day, I am filled with such gratitude that Annika is still with us.  Every day, I think of her donor and this beautiful gift. Every day, I mourn because somewhere a family feels a hole, even as our family feels whole.

Somewhere, I hope a family feels a glimmer of comfort knowing that their child/sibling's heart lives on. And this heart is doing beautiful things and going remarkable places. It hiked fifteen miles and swam in the Mediterranean. It fuels plenty of sass and some amazing smiles.

Sunday marks 18 months since transplant. Yesterday Annika met with cardiology and had another echocardiogram. As always, I teared up a bit and felt gratitude for the goodness in this world as I watched this remarkable pump beat steadily on. This special shared heart looks fantastic, and Annika is cleared for a summer full for camps, family reunions, and other fun.

To the many who bless the lives of all in our family, and most particularly to Annika's donor, thank you.

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." 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.