Back in June, I wrote a little bit on the blog about how Annika's cardiac arrest felt like a Blip. It was a surreal, life-altering occurrence that we hoped would be a rare outlier. Singular. One and done.
Unfortunately, a week ago Thursday the Blip blooped. The day was pretty much terrible all around. I'd had a screening colonoscopy and wasn't allowed to drive post-anaesthesia, so I asked my neighbor to pick up Annika. They had trouble connecting, mostly because Annika forgot. When Annika finally remembered, she started to run around the school to the pick-up spot with her heavy backpack and it was just too much for her heart. It went into venticular tachycardia (or V-tach, as they say in the medical world) and she passed out.
I got a frantic phone call from my neighbor saying that Annika had collapsed, she couldn't get her up, and I needed to get there NOW. Anesthesia be darned, I grabbed the keys and dashed to the car but it was COVERED in snow. Absolutely no way to drive until the car was scraped. Oh, the panic!
I called my neighbor to ask if she had called 911, but by this time Annika had revived. By the time I made it to the school, Annika was standing. She seemed a little dazed and frightened, but she was okay. My poor neighbor was more traumatized than my daughter. I can't imagine what it must have been like for her, especially with her own young children in tow.
I took Annika home and immediately called her cardiology team at Primary Children's. At this point, I wasn't sure if Annika had experienced a dangerous arrhythmia or just fainted. We sent a remote transmission from her ICD (thank you bluetooth technology), and they confirmed the arrhythmia and subsequent shock from her defibrillator. I say "arrhythmia" because it feels less serious, but let's be straight forward for a moment. V-Tach is deadly. Annika's ICD saved her life.
From Annika's perspective, the event was relatively minor. She remembers blacking out but doesn't recall the shock. (That's a blessing because they can be pretty painful.) Her chest was a little tender around her ICD so we skipped sewing that afternoon, but she felt well enough to be a ghosty in the school musical "We are Monsters" that evening. Our little girl sang her heart out, and once again we felt such gratitude that she was with us.
Real-time enlightenment: I don't know how I missed it at the time, but all of a sudden I am struck with the irony of the situation. Our little ghosty (front row far left) nearly took her role far too seriously, going completely into character. Shivers up my spine!
Given this recent scare, it made sense that Jason and I should have some deep conversations with Annika's cardiologist. After Annika's ICD replacement in December, her team suggested we schedule a "pre-transplant informational meeting." This was meant to be an educational opportunity to learn more about transplants so that we can consider this treatment option from a place of understanding. When the meeting was scheduled originally, I kind of felt like it was too soon for this heavy conversation. After the bloop, the timing felt just right. If defibrillation is going to happen regularly, we need to be prepared. To quote Annika's cardiologist Dr. Lal, "She's tried hard to die on us--twice."
The meeting was intense but very helpful--ninety minutes of one-on-one conversation with Dr. Lal and Karla, a transplant nurse. We've covered transplants briefly in nursing school, but I learned SO MUCH more. Transplant is huge! In general there are three main concerns: rejection, infection, and cancer.
Because rejection can be fatal if an arrhythmia occurs, post-cardiac transplant patients are monitored VERY closely. They have to have a full cardiac catheterization with biopsy after 2 weeks, 4 weeks, 6 weeks, 3 months, 6 months, at the year mark, and then every year until 5 years, when it tapers to every two years. There are frequent labs and follow-up visits, and a huge regimen of medications, most of which are prescribed for life. Tacrolimus, mycophenolate, and a steroid are titrated and prescribed as immunosuppressants to curb rejection. Bactrim, nystatin, and acyclovir are given as prophylactic medications to help with infection. The list felt like a review session for my pharmacology class. I don't know a ton about these meds, but I know enough to understand that some of them come with serious side effects, with the worst being kidney damage. Besides kidney disease, there are other serious comorbidities that pop up in young transplant patients, such as hypertension and high cholesterol. Even more concerning is the high incidence of PTLD (Post-Transplant Lymphoproliferative Disorder.) This uncontrolled cell growth is basically cancer that is unique to post-transplant patients. Finally, it's important to remember that heart transplants don't last forever. We were given 14 years as an average. While a donor heart could last significantly longer, it could also be less. Retransplantation (a second or even third transplant) is possible, but the hard reality is that outcomes for retransplants are usually worse.
Transplant has its advantages too. On a day to day basis, Annika would likely feel better. She could enjoy activities that are painful or difficult for her now, such as running, playing sports, or hiking. We could let her ski without living in fear that she will collapse in the trees. The difficult thing about Annika's heart right now is that it doesn't fall into any neat boxes of diagnosis. While we know there are major problems, it's difficult to predict what will happen in the future.
Pondering all of this has made one thing very clear to me. Barring a significant change in Annika's condition, we are NOT likely to pursue transplant as a treatment option any time soon. Her quality of life is just too good! Sure, she can't play sports, but there are all sorts of things that she can do and loves doing. She likes school, Girl Scouts, her sewing class, and bouncing on the trampoline. She takes piano lessons from Grandma Susie, crafts constantly, and regularly has her nose in a book. Yes, her heart is temperamental, but I think I trust it more than I trust a transplant. If she didn't have her ICD, I might feel differently, but ultimately defibrillation worked. We've tripled her dose of beta blocker to help prevent further arrhythmias, but should it happen, I'm hopeful that "Fred and George" will take care of Annie. (Her new ICD has the same name as the first.)
When I think of Annika, the word "vibrant" comes to mind. She is so full of spunk and life! It doesn't surprise me that her heart is one of a kind, refusing to conform. She does very few things in the "normal" way. As long as Annie feels well and is full of this vibrancy, my vote is to give her heart the chance to provide a long and beautiful life.
So ghosty, you're cute, but no more scary bloops!
