Josiah’s Journey with Dilated Cardiomyopathy

In May 2021, Josiah was on his way to work with his dad. With COVID restrictions keeping schools in distance learning, he had extra time on his hands. Rather than spend his days playing computer games, he decided to work.

It was early—around 7:30 a.m.—when Josiah suddenly said, “Dad, my chest feels weird.” By the time they pulled into the parking lot just 12 minutes later, he was nearly doubled over in pain. His dad made a quick decision: instead of going to work, they headed straight to the emergency room.

At the Swedish-Edmonds ER, Dr. Kevin ran tests, including an EKG and imaging. The results were concerning—serious enough that he insisted Josiah be transferred immediately to Seattle Children’s Hospital by ambulance. This would be the first of many overnight stays in the hospital’s cardiology unit.

After extensive testing, doctors diagnosed Josiah with Dilated Cardiomyopathy. His left ventricle was significantly enlarged, preventing his heart from pumping effectively. Typically, patients with this condition experience symptoms like blue lips, cold extremities, dizziness, and shortness of breath. Josiah had none of these—making his diagnosis a complete shock to both his parents and doctors. One physician even told him, “You’re a lot more exciting on paper,” noting how healthy he appeared despite his failing heart.

As he left the hospital, Josiah noticed a poster featuring a young patient. He turned to his dad and said, “I’m one of those now. I’m a Seattle Children’s kid.”

At the time, no one realized just how true that would be.

A Long Road of Treatment

Since his diagnosis, Josiah has had monthly cardiology visits and consultations with specialists. Doctors tried different medications in hopes of improving his heart function, but nothing led to significant changes. Over time, his symptoms worsened—dizziness, shortness of breath, nausea, and extreme fatigue became part of his daily life.

In October 2022, doctors implanted an S-ICD (Subcutaneous Implantable Cardioverter-Defibrillator) to deliver a shock if his heart stopped. It only activated once—during a laser tag game at Band Camp—but thankfully, it hasn’t happened again.

By Christmas 2022, his family realized his good days were becoming rare. Chronic illness can lull families into accepting a “new normal” of not feeling well, but Josiah’s worsening condition was impossible to ignore.

Doctors decided to try one last medication, administered through an IV, requiring a month-long hospital stay for monitoring. When they weaned him off, they finally captured a clear episode of the irregular heart rhythms affecting him. Genetic testing also revealed a rare mutation linked to Dilated Cardiomyopathy, though little is known about how it is triggered.

Facing the Next Step

For two years, doctors had tried to help Josiah’s heart recover through medication, but it became clear that wasn’t working. The next step was a heart transplant or an LVAD (Left Ventricular Assist Device), a surgically implanted pump that helps the heart circulate blood.

Josiah, determined to finish his senior year in person, chose the LVAD route. He pushed through the rest of his junior year despite his worsening symptoms.

In July 2023, he returned to Seattle Children’s to begin the heart transplant evaluation and prepare for open-heart surgery to implant the LVAD.

Life with an LVAD

The surgery was successful, but recovery was difficult. Josiah developed sepsis, and though no cultures grew, fluid buildup in his lungs required another procedure. In total, he spent 33 days in the hospital.

Recovery at home was a long and challenging process. Many LVAD patients struggle with mental health, as the device comes with significant limitations. Josiah is now connected 24/7 to a bag holding six pounds of batteries and a controller that keeps his LVAD pumping blood through his heart.

Everyday tasks became complicated. Showering is difficult because neither the bag nor the driveline (a wire coming out of his stomach) can get wet. He can’t set his bag on the ground because the driveline isn’t long enough, and even something as simple as putting on a coat requires careful maneuvering to avoid pulling on the wire—a painful and dangerous risk.

While his stamina improved, and his heart failure symptoms decreased significantly, senior year remained a struggle. His health forced him to miss too much school, preventing him from graduating. However, his family is incredibly proudthat he recently passed his GED exams with phenomenal scores.

Waiting for a New Heart

The next step is a heart transplant. Josiah has been on the transplant list since July 2024 with a 4A designation, meaning he is high priority but stable enough to wait at home.

His journey has been long and difficult, but through it all, Josiah has faced every challenge with resilience. Now, he waits for the call that will change his life—a new heart and a fresh start.

About COTA

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.