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.
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.
