Join the Beat

Hello family and friends! First, THANK YOU! The shirt sales were a great success, raising over $1,200 for COTA for Team Ham! We LOVE receiving the photos of you in your shirts. Please keep them coming! We cannot express how grateful we are for COTA and their support to help meet the transplant-related needs of Kya and Eli. We are especially thankful that this program will support their transplant-related needs throughout their lifetime. Your thoughtfulness and generosity make it possible. We look forward to sharing future events and opportunities as we continue working toward our COTA fundraising goal. If you missed out on ordering a shirt, we will reopen sales later this year if there is enough interest, so stay tuned! Please keep sharing our blog and contributions can be made on the COTA for Team Ham page.

All That Glitters

After many medical appointments, we got busy catching up on life and our update has been delayed longer than planned. I’m a bit in my ‘feels’ today, so I hope you don’t mind some nostalgia and hard truths. I generally keep these shoved in a closet, but they eventually burst out all over the place (just ask Eric), and like glitter, they stick on everything. Let’s see what’s in this closet of mine…

When I was in elementary school I loved to read. I had a bookmark that was my absolute favorite: It had a rainbow on it with a pot of gold and the caption said: “All that glitters is not gold.” It’s funny how little memories stick with you for a lifetime. I didn’t really know what it meant, but it has some meaning to me now…

Open My Closet

Before getting to the medical update, I’m going to share some ‘glitter’ by noting a few moments:

• Sitting in the doctor’s office with my child, watching the fear and heartache well up and spill down their cheeks.
• Discussing end-of-life issues, like funeral arrangements and who they want their belongings to go to.
• Completing advanced directives and discussing health care wishes.
• Feeling utterly powerless to shield them from so much heartache, worry, and pain.
• Trying to respect their autonomy and decision-making rights as young adults while also knowing they are still learning and these decisions are impossibly complicated and hard.
• Giving them space while also wanting to hold them close (and never let go).
• Reconciling the nagging and devastating reality of worst-case scenarios.
• Grieving their loss of an ‘ordinary’ young adult life experience, one that we wanted to be filled only with hope, excitement, and anticipation of a beautiful future.
• More grieving.
• Then feeling guilty about grieving because we should be celebrating every day we have together.

Anger, fear, loss, letting go, holding on, grief, rage, heartbreak…it’s all SO HEAVY. Thank you for letting me air out some feelings. I hope you don’t mind the ‘glitter’.

Medical Update

When I last wrote, we were in the process of Eli’s evaluation for transferring to the adult transplant list. Like many of our medical adventures, this was also an emotional roller coaster with twists and turns. The good news is that Eli is doing somewhat better, likely attributable to getting more rest with his current schedule. At this time, Eli will continue on the heart transplant list. This is the best opportunity of receiving a heart transplant before, you know, the worst case scenario. (I’m tired of saying ‘worst case scenario’. I need a different phrase, maybe a nickname of sorts. Any suggestions?) A variety of circumstances could change Eli’s status, but all things remaining, the wait could be two years.

Kya continues to see the heart failure team and get regular symptom management. Her symptoms present significant challenges to her daily life, which are frustrating for her. Unfortunately, despite her need, being listed for transplant is not an option at this time. You may recall, there is a long and complicated list of criteria for a transplant. This worries us, but we take it a day at a time.

Something we have come to understand is how differently ARVC is presenting in Kya versus Eli. It is only natural to compare the two, but as the doctor has explained, Kya’s presentation of heart failure symptoms is more ‘traditional’. You might say that we can see it coming, at least to a degree. Eli’s disease presentation is unpredictable, and he’s more likely to experience a sudden event, going from okay to very bad without much warning.

So as for March of 2025, we continue waiting for a transplant phone call that could change everything in a heartbeat (pun 😊) and send us to the hospital for a different phase of this journey. We also know that other phone calls and situations can arise, and the ‘worst-case-scenarios’ (there it is again) are always tugging at this mamma’s heart.

Sparkle On

I think feelings, nostalgia, and heart transplants are glitter and not gold – not always positive or exposing a ‘silver lining,’ but they are important, capturing our attention, and stick all over things. I don’t know exactly what Shakespeare intended when he wrote “All that glitters is not gold”, but you are glitter and gold! Thank you for sticking to us! Sparkle on, friends.

Happy St. Patrick’s Day!

Learn more

If you’d like to learn more about heart transplant:

https://www.mayoclinic.org/tests-procedures/heart-transplant/about/pac-20384750

Every donor can save 8 lives and enhance over 75 more: www.organdonor.gov