Gratitude

Thank you so much for rallying around our family and raising awareness of organ transplants and #cotaforteamHAM. We are acutely aware of the immense heartache and suffering that others are navigating among our friends, family, and across the globe. Your time and resources show us love and care, and the ripples of your kindness impact our family and beyond.

T-shirts

The #cotaforteamHAM shirts should be ready by the end of this week. Creator Designs will contact you directly regarding your order. When you get your shirts, we’d love to see you in them! Please text us or post photos on your socials, add #cotaforteamHAM, and tag us! Special Note: If your order processed as a pick-up instead of a shipping order, please let me know ASAP if you cannot pick it up. I will work on possible solutions – you are not alone, as I messed up our order as well.

Time & Patience

I have mentioned time and how we have some degree of ‘luxury’ in this element. This is because we have the advantage of early diagnosis which has afforded us some time to prepare. There are pros and cons to this, but here are some points that guide our decisions:

• Kya’s and Eli’s heart function will continue to decompensate due to the effects of ARVC.
• A heart transplant is the only option to extend life beyond the end stage of ARVC.
• Transplantable hearts are a limited and precious resource.
• UNOS and OPTN manage transplants in the US and set transplant eligibility criteria, but each transplant center conducts its own evaluation. You are listed only at that specific transplant center unless you elect to go through the eligibility determination process at another transplant center (this gets complicated quickly – think insurance, copays, proximity to center, access to regular transplant care, etc.)

Variables

• Predicting disease progression is difficult. Getting a heart transplant at the ideal time is all but impossible. You can get too sick to receive a transplant, where the patient is unlikely to survive and/or recover from transplant surgery. Alternatively, you want to take all the time you can get from your current heart due to the limited life span of transplanted hearts and potential complications.
• Eligibility criteria for heart transplants are complicated. Physical health is thoroughly examined, along with access to caregiver support, resources for medication and medical care expenses, psychological capacity, and many other elements.

Realities of Being on the List

• You must be ready to head to the hospital at any time, 24/7. Have a bag packed.
• Traveling more than 4 hours from the transplant center presents specific barriers. You must be able to get to your transplant hospital, along with your caregiver(s), within a window of time to receive the transplant. The time frame from recovery of the donor heart to the transplant recipient is 4-6 hours.
• If and when the call comes, all life activities are full stop for you and your caregiver to focus on surgery and recovery for several months. The first year has the greatest risk for rejection of the new heart. It’s important to note that many recipients are waiting in the hospital and ordinary life has already been dramatically altered.
• Following hospital discharge, we must remain within 30 minutes of the hospital for approximately 3 months, depending on progress. We are fortunate to live within 30 minutes, so we are not required to relocate for that post-op care time frame.

A Year Ago 2024

A year ago, we were processing all of this information for the first time as the decision was made to place Eli on the heart transplant list. We anticipated a long wait because his cardiac status, while eligible, was low on the priority list. The list is organized by acute need and other various factors.

A year ago, Kya was in the hospital, and her cardiac function was critically low. For a variety of reasons, she was not eligible for the transplant list. The doctor’s medical opinion was that Kya’s heart had a 50% chance of making it through the next year.

Arrival of 2025

As I write this, I shake my head at how we have arrived in 2025. Eli is being evaluated for listing on the adult side of transplant care. While we know heart transplant is part of the future, it’s possible the transplant team will decide to press pause on active listing if Eli’s cardiac function is not within the eligibility criteria. As you might imagine, we would be thrilled to learn that his heart function is well enough, but also know what the future holds. We expect to learn more in late February when his testing is complete.

Kya’s heart function has made improvements following medication changes, and she is doing well in 2025! We will continue to navigate appointments and discuss transplant needs and considerations in the months ahead.

In the End

If there’s anything we’ve learned, it’s that everything can change on a dime. What is true today can completely change tomorrow. Staying well, getting adequate rest (fatigue is always a challenge), and taking medication regularly are the primary things they can have some control over. Everything else is beyond control.

In the meantime, we practice a lot of patience and make the most of time. While we know some things to be true, there are many unknowns that make it difficult to plan for the future. We will continue to take each day as it comes. We will continue to be grateful for periods of stable health and the time to cherish and prepare. And we will definitely purchase trip insurance for any future adventures!