Supporting Trevor’s second open heart surgery

Friends and Family,

We never thought we’d be writing this, but Trevor is scheduled for his second open-heart surgery on September 24, 2025, just eleven days after our wedding.

Many of you know that Trevor’s journey started back in January 2024, when he went through major, life saving, open-heart surgery to repair an aortic aneurysm caused by a rare genetic mutation called ACTA2. It’s a mutation that has taken far too much from his family already. Thanks to incredible care at the Mayo Clinic, the surgery was successful, despite his surgeon telling us Trevor’s aorta was the thinnest he had ever seen. We caught it just in time, with months to spare.

The recovery was long and hard, but slowly Trevor started to feel more like himself again. We felt like we could stop holding our breathe, we could get back to building our life. Then, just a few months later in July, he began having severe chest pain. At first we thought it was just part of healing, but by September he was hospitalized with dangerously high inflammation and strain on his heart. It was really scary. That’s when we first learned the word pericarditis, a painful inflammation of the lining around the heart.

Trevor got treatment, and doctors reassured us it was unlikely to come back. But by December, it did. By February, we were back at Mayo inpatient, this time being followed by their Pericardial Clinic. He went through every therapy and medication possible, including nearly a year on heavy steroids. We have been in and out of the hospital over the past 11 months, sometimes for up to a week at a time.

For almost a year now, Trevor hasn’t been able to let his heart rate go above 100. He’s been immunocompromised, unable to bike, unable to be active, unable to live the life he loves. For those that know him, this has been devastating. And yet, through it all, he’s kept showing up for work, for friends, and for me while carrying so much pain. Trevor has become incredible at carrying this weight and trauma in a way that does not impact others. He is truly remarkable. We’ve been planning our wedding knowing it wouldn’t look like the day we once dreamed of but never anticipated this update. Trevor followed the doctors orders and even with the strongest treatment available, by early this month (August), it stopped working. We were out of additional treatments.

At this point, Trevor’s only option is another open-heart surgery, a pericardiectomy, to remove the diseased lining around his heart. It’s his best chance at finally healing. This surgery is anticipated to be longer than the previous aorta repair, but will have Trevor hooked up the heart and lung machine again. Even just being able to live without constant hospital stays would be a win, but we’re holding onto hope that this will give him back the active, full, life he deserves. We are not ready to face a reality where that is not an option.

The past two years have taken so much out of us. Trevor started this at 28, healthy and active. Now, at 30, his life looks completely different. No one plans for open heart surgery once, let alone twice mentally, physically, or financially. Facing this once is more than anyone should have to. Facing it twice, while trying to start our life together, feels impossible.

We’ll need to spend a long stretch of time at Mayo for surgery and recovery, with all the expenses that come with travel, lodging, and both of us being away from work for a long time as recovery is expected to be a little more challenging this time around. We know from experience a majority of the medical leave will be unpaid. The truth is, we’re exhausted, were angry, we’re scared, and our hearts are heavy, but we’re also still holding tight to hope and gratitude to have Trevor here, and the amazing team that surrounds him.

Thank you for reading, for caring, and for walking through this with us. We know this might come as a shock. We truly hoped it wouldn’t come to this, which is why we kept things close until now. Your love, your prayers, and your support mean more to us than we can ever put into words. It is truly what helps us get out of bed some mornings.

With so much love and gratitude,

Emily & Trevor ❤️