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.<\/p>\n\n\n\n
It was early\u2014around 7:30 a.m.\u2014when Josiah suddenly said, \u201cDad, my chest feels weird.\u201d 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.<\/p>\n\n\n\n
At the Swedish-Edmonds ER, Dr. Kevin ran tests, including an EKG and imaging. The results were concerning\u2014serious enough that he insisted Josiah be transferred immediately to Seattle Children\u2019s Hospital by ambulance. This would be the first of many overnight stays in the hospital\u2019s cardiology unit.<\/p>\n\n\n\n
After extensive testing, doctors diagnosed Josiah with Dilated Cardiomyopathy<\/strong>. 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\u2014making his diagnosis a complete shock to both his parents and doctors. One physician even told him, \u201cYou\u2019re a lot more exciting on paper,\u201d noting how healthy he appeared despite his failing heart.<\/p>\n\n\n\n As he left the hospital, Josiah noticed a poster featuring a young patient. He turned to his dad and said, \u201cI\u2019m one of those now. I\u2019m a Seattle Children\u2019s kid.\u201d<\/p>\n\n\n\n At the time, no one realized just how true that would be.<\/p>\n\n\n\n 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\u2014dizziness, shortness of breath, nausea, and extreme fatigue became part of his daily life.<\/p>\n\n\n\n In October 2022<\/strong>, doctors implanted an S-ICD<\/strong> (Subcutaneous Implantable Cardioverter-Defibrillator) to deliver a shock if his heart stopped. It only activated once\u2014during a laser tag game at Band Camp\u2014but thankfully, it hasn\u2019t happened again.<\/p>\n\n\n\n By Christmas 2022<\/strong>, 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\u2019s worsening condition was impossible to ignore.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n For two years, doctors had tried to help Josiah\u2019s heart recover through medication, but it became clear that wasn\u2019t working. The next step was a heart transplant<\/strong> or an LVAD<\/strong> (Left Ventricular Assist Device), a surgically implanted pump that helps the heart circulate blood.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n In July 2023<\/strong>, he returned to Seattle Children\u2019s to begin the heart transplant evaluation and prepare for open-heart surgery<\/strong> to implant the LVAD.<\/p>\n\n\n\n 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<\/strong> in the hospital.<\/p>\n\n\n\n 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<\/strong> to a bag holding six pounds of batteries and a controller<\/strong> that keeps his LVAD pumping blood through his heart.<\/p>\n\n\n\n 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\u2019t set his bag on the ground because the driveline isn\u2019t long enough, and even something as simple as putting on a coat requires careful maneuvering to avoid pulling on the wire\u2014a painful and dangerous risk.<\/p>\n\n\n\n While his stamina improved<\/strong>, 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 proud<\/strong>that he recently passed his GED exams with phenomenal scores<\/strong>.<\/p>\n\n\n\n The next step is a heart transplant<\/strong>. Josiah has been on the transplant list since July 2024<\/strong> with a 4A designation<\/strong>, meaning he is high priority but stable enough to wait at home.<\/p>\n\n\n\n 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\u2014a new heart and a fresh start.<\/p>\n\n\n\n The Children\u2019s 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\u2019s 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\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n","protected":false},"excerpt":{"rendered":" Josiah\u2019s 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\u2014around 7:30 a.m.\u2014when Josiah suddenly said, \u201cDad, my […]<\/p>\n","protected":false},"author":5,"featured_media":139,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\nA Long Road of Treatment<\/h3>\n\n\n\n
Facing the Next Step<\/h3>\n\n\n\n
Life with an LVAD<\/h3>\n\n\n\n
Waiting for a New Heart<\/h3>\n\n\n\n
About COTA<\/h2>\n\n\n\n