I don’t know but I’m willing to find out…….

Katja was doing great. She had made the transition from wheelchair to walker and was slowly building her endurance back up. Her Chorea was still progressing but at a slower rate. We decided to have a talk with her Neurology team at Boston and finally caved to have a DBS (deep brain stimulation implant) surgery consult.

We packed up and flew Jori, Katja, Finn and Myself to Boston (older 3 stayed home with Grandma). Everything went really well and we had a long talk with Dr. Northam at Boston. We all agreed that Katja would make a great candidate for DBS and we’d go ahead with brain surgery for mid-Aug. Neurology requested clearance from Cardiology, as DBS is a 8hr surgery.

We stopped in to see Dr. Friedman expecting the appointment to be a formality. Katja had just had an Echo at Seattle Children’s in Jan 2025…..4 Months ago. It was stable/unchanged. So when Dr. Friedman walked in and told us “I have some bad news” my heart absolutely sank. In the past we’ve had months (usually 6-12 months notice) of when Katja is in heart failure. That time to prepare is usually invaluable. We received the news that we had months, 3 months if we were lucky. Honestly, the shock took awhile to set in. We left that appointment and took the kids to Salem for the afternoon. We all needed time to process and think.

The Truncus community is tight. We are always looking out for each other and ways to help our kids. So when the idea of Partial Heart Transplant was floated, I was skeptical. I’ll be honest, we weighed the pros/cons for days. Had long talks with Seattle, Boston and Duke (North Carolina).

How can we be given an opportunity so perfect that we let fear hold us back? I couldn’t, not for Katja. For her, I’d walk barefoot through hell and walk out the other side holding an immortal heart to stick in her. Graphic, I know, but I’d do it.

So learning about the amazing stuff happening at Duke and with Dr. Turek, we decided to speak with him. He’s from Chicago, so what’s not to like 😉He said all the things we needed to hear and all the things we didn’t want to hear but needed to be said. This is her 4th Open Heart Surgery. The risks are high, her Chorea getting much worse is high but the rewards could be life changing.

And so, Katja has been placed on the donor list.

Over the coming weeks I’ll do my normal series of breaking down the surgery, explaining what a PHT (partial heart transplant) is and following Katja through this journey to (W)hole heartedness.

Is PHT a cure? I don’t know but for the first time, it sure looks like one.