Caring for a Special Heart

Annika is currently in the cath lab getting a heart biopsy.  We are nearly at the six month mark post-transplant, so this procedure is a big deal.  This is the first post-transplant cath where they access both the right and left sides of the heart, looking at the coronary arteries as well as general pressures.  To get to her heart, they will have to go in through her groin instead of her neck, so her recovery will be slightly longer as well, requiring hospital "flat time" that she hasn't been necessary for her prior caths (2 weeks, 4 weeks,  6 weeks, and 3 months.)  Assuming all goes well, Annika won't be back in cath lab again until the one year mark, sometime around her "Heartiversary."

Waiting to get called back.  Annika wasn't happy about getting out of bed, but was super pleasant and talkative once we arrived.  She convinced the anesthesiologist to sing "Let it Go" as she drifts off to sleep.

Vitals, then switching into hospital clothes that are WAY too big.

As for myself, I'm feeling lots of emotions right now.  I brought plenty of schoolwork to keep me occupied, but I concentrate on anything besides this special heart journey.  Today I am particularly mindful of Annika's donor and their family. I feel immense gratitude for their gift, looking outward to others from the depth of their loss. I'm so thankful for this gift of a loving heart, even as I feel sorrow that they've lost their loved one. I am grateful that Annika's healing and recovery has been relatively uncomplicated, allowing her to live life fully.  Following the heart journeys of others makes me keenly aware of how very blessed we are. 

But, if I'm completely honest, I also feel a little scared.  Nowadays, I always feel a bit worried and anxious.  It's hard to accept that transplant is a treatment, not a cure.  Even though this transplant is an answer to prayer and a literal miracle, it's still not what we hoped for.  Once you've had your first transplant, the question isn't if you will need a second, but when.  And if a second transplant doesn't happen, it probably means you were too sick to be eligible.

But hey, good news!  I just heard back from the cath lab and Annika's heart looks great today.  Her filling pressures on the left side are a little bit high, but stable from the prior cath readings.  We also learned that her coronary arteries on the right are smaller than typical, but there are no occlusions and they are functioning well.  Once again, we are so grateful for the blessings.

I'm still waiting to be called back to the PACU to see Annika, so let me share some more of our heart journey in the meantime.  

Taking care of a transplanted heart is a lot of work, but worth it.  Annika has blood draws once a week on average.  Sometimes they space out to every other week, but if anything is going on, she has to come in more often.  Blood draws usually mean an early wake-up because they have to draw blood at trough when her medication levels are lowest, typically right before the time she takes morning meds.

 

At least we reward her with breakfast from the hospital cafe.

Annika's neutrophil count (a kind of white blood cell) has been consistently low, so we've had to give her a few injections at home to help boost her immune system.  Even though I am a nurse, Annika is not a fan of me giving her shots.  Jason finally had to pin her down while I gave her a quick jab.  Drama and trauma all around.  I'm hoping not to repeat anytime soon.

Never thought our home would have a Sharps container.

Here are some photos from our 3 month cath on March 14th.

So sleepy.

After a long day, Annika seeks some comfort from the giant bear on our way out.

At three months we were able to cut back on Annika's medications quite a bit.  Hard to believe that this pile is less, but we are moving in the right direction.

However, this cath also detected some low levels of Class II DSA (Donor Specific Antibodies.)  This meant that we needed to begin three months of IVIG (Intravenous Immunoglobulin) therapy.  Getting IVIG is an all day affair.  The first time was best because pet therapy and our New York family came.  I've shared these pictures before, but wanted to include them again.

Next round was May 12th.  Did you know IVIG gets super bubbly?

Back again on June 9th.  Another long day, but at least Annika didn't get a migraine after, as happened the other two times.  Plus, she got to play Minecraft for hours.  In a month we will retest, and if Annie's DSA levels have dropped, we might not have to come back for more.

Physical proof of her special heart, alongside some special keloid scars.  I hope Annika is able to feel proud of her bravery lines--they share a beautiful story.

Annika picked up some sort of stomach bug on the Friday before Memorial Day.  Nausea, vomiting, diarrhea, loss of appetite--poor girl felt really gross! We knew she was seriously under the weather when she wasn't interested in looking for bugs as we camped.  On Thursday, May 29th she woke up with serious abdominal pain so we finally took her into the Emergency Department.

While there, she started to feel better and even ate a bowl of macaroni and cheese.  So, they did a bunch of tests and then finally sent us home just in time for Annika's sixth grade promotion.

Sweet Talia brought Annika's clothes up to the Emergency Department and french braided her hair so that we could go straight to her elementary school graduation.

In the end, we made it with five minutes to spare.  Hurrah!  We are grateful for this beautiful heart and the beautiful village that help you be not only where, but who you want to be.