{"id":485,"date":"2026-08-12T03:52:57","date_gmt":"2026-08-12T03:52:57","guid":{"rendered":"https:\/\/cota.org\/cotaforevelynsheart\/?p=485"},"modified":"2026-08-14T03:53:20","modified_gmt":"2026-08-14T03:53:20","slug":"we-dont-just-need-a-heart-we-need-the-right-heart","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforevelynsheart\/2026\/08\/12\/we-dont-just-need-a-heart-we-need-the-right-heart\/","title":{"rendered":"We don’t just need a heart, we need the right heart."},"content":{"rendered":"\n
There have been some BIG updates with Evelyn\u2019s transplant journey, so I wanted to try to explain where we are right now in a way that makes sense. <\/p>\n\n\n\n
Evelyn\u2019s antibodies are still high at around 30%. In simple terms, this means that, based on her current antibody profile, roughly 70% of donor hearts may be potential matches, while the other 30% carry proteins (HLA antigens) that her immune system may recognize and attack.<\/p>\n\n\n\n
The good news is that the antibody numbers themselves are slowly coming down. Right now, some of the antibodies are around 13,000. Her team considers an HLA antibody level below about 8,000 much safer. Once they get below that threshold, the team may be willing to consider a heart carrying those particular antigens.<\/p>\n\n\n\n
Right now, accepting a heart with those stronger antibodies would carry too much risk of immediate rejection. So even though Evelyn is listed at the highest priority, we can’t simply accept the next heart that becomes available. It has to be a heart that her body has a reasonable chance of accepting.<\/p>\n\n\n\n
Recently, Evelyn has actually come up on the “lists” for multiple donor offers, and she’s been very high on those lists. She just hasn’t been number one yet, or the available heart hasn’t been one that she can safely accept.<\/p>\n\n\n\n
We were also told something today that really put her situation into perspective: Evelyn is currently the only child in our region with her blood type who is waiting for a heart at Status 1A, the highest pediatric transplant priority.<\/p>\n\n\n\n
And then today, her cardiology team asked us about something called DCD \u2014 donation after circulatory death.<\/p>\n\n\n\n
Normally, when someone becomes an organ donor, donation occurs after brain death. With DCD, donation can happen after a person’s heart and circulation have stopped and the medical team determines that death has occurred. Adding DCD donors to Evelyn’s options could significantly increase the pool of hearts she can potentially receive.<\/p>\n\n\n\n
But there is a difficult part.<\/p>\n\n\n\n
With DCD, there is a possibility that the team could take Evelyn into the operating room, prepare everything, and ultimately determine that the donor heart isn’t suitable for transplant. That’s called a “dry run.” We were told the chance of a dry run is roughly 50\/50. Imagine waiting nearly a year for your child’s heart, finally getting the call, rushing into surgery believing this could be the moment you’ve been praying for\u2026 and then having to walk back out without a heart.<\/p>\n\n\n\n
That possibility is terrifying.<\/p>\n\n\n\n
But after talking through everything with Evelyn’s team, we decided to add her to the DCD donor pool. We’re doing this because we want to give Evelyn more opportunities to find a heart that is safe for her.<\/p>\n\n\n\n
The longer she waits, the more important it becomes to open every door we safely can. So right now, we’re watching those antibody numbers come down. We’re hoping they continue dropping toward that 8,000 threshold. We’re watching every donor offer. We’re hoping one of those offers eventually becomes the one. And now, we’ve added DCD to the possibilities in hopes that it can shorten this incredibly long wait.<\/p>\n\n\n\n
There is still so much uncertainty.<\/p>\n\n\n\n
But for the first time in a while, it feels like we’re finding ways to expand Evelyn’s chances instead of just waiting for the perfect heart to appear.<\/p>\n\n\n\n
So please keep our girl in your thoughts. Keep hoping with us. <\/p>\n\n\n\n
We don’t need just a heart.<\/p>\n\n\n\n
We need the one her body can safely accept and the one that can finally bring her home.<\/p>\n\n\n\n
How You Can Help<\/h2>\n\n\n\n
Upgrade your kitchen at our Pampered Chef virtual pop-up – a COTA for Evelyn’s Heart Fundraiser! You get to update your favorite kitchen tools, and 30% of sales go to COTA for Evelyn’s Heart!<\/p>\n\n\n\n
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