Donor Unknown but Still Better Than Schlimgen’s Original Model

Inheriting the Schlimgen heart disease from my grandmother has deeply influenced how I view health and family history. During my childhood, our extended family gathered for assessments conducted by Harvard University. They organized us, recorded EKGs, collected blood samples, and performed general health examinations. It was found that half of us inherited Grandma’s heart condition. When a parent had the disease, it would be passed on to fifty percent of their children. My father, Robert, had the defect, meaning that among his four children, my sister Pam and I were the unlucky recipients of the defect. This genetic condition has strengthened the bonds within my family, as we unite through shared experiences and mutual understanding. Although the Schlimgen heart defect brings undeniable challenges, it has also taught me the value of resilience, informed medical care, and the power of confronting hereditary obstacles as a united family.

As a child, I recall gathering for the testing sessions, which felt like pleasant times shared with my cousins, and I was genuinely fascinated by the tests themselves. Being too young to grasp the gravity of the situation, the medical tests felt like an exciting adventure shared with family. When I was about sixteen, my father began to exhibit symptoms of the condition. As his condition worsened and working became increasingly difficult, I began to grasp the full severity of the illness. Back then, Harvard had diagnosed the genetic flaw in my two brothers, leading me to think I was spared from the dreadful malady. Still, for years I adhered to the heart-healthy regimen my mother made for my father, alongside the other health precautions he took. Naturally, convinced of my youth and invincibility, I completely disregarded these habits as soon as I left home and gained my independence.

When I was in my early forties, I started exhibiting signs of the Schlimgen heart defect. Initially, I dismissed the symptoms, trusting Harvard's diagnosis and their claim that I had not inherited the condition from my father. However, after fainting at work, I sought assistance from the school nurse. Upon listening to my heartbeat, she detected a dangerous arrhythmia. Before long, I was referred to Dr. Mahoney, marking the beginning of the gradual deterioration of my heart.

Initially, Dr. Mahoney prescribed me metoprolol, a beta-blocker, to manage my atrial fibrillation. While this treatment was effective for several years, eventually my body began to resist its effects, and my heart no longer maintained a steady rhythm. Subsequently, I was referred to Rochester for a radiofrequency ablation of the heart. During this procedure, a slender, flexible catheter was threaded through a blood vessel in my groin and advanced to my heart. The doctor then used the catheter to deliver targeted burns to specific heart tissue areas, creating small scars intended to interrupt the abnormal electrical signals. This intervention specifically targeted my pulmonary veins, which are common sources of the electrical disturbances causing atrial fibrillation. Fortunately, it successfully re-established a normal sinus rhythm, allowing me to go back to Omaha feeling much better.

The following years were challenging as my heart persistently relapsed into continuous A-Fib, leading to a decline in my overall health. I underwent two additional ablation procedures—one cryoablation and a subsequent radiofrequency ablation—but neither proved effective. Keeping up with my young children and maintaining my job as a high school teacher became increasingly difficult. At this point, Dr. Mahoney recommended implanting a heart pacemaker equipped with shock delivery, known as an implantable cardioverter-defibrillator (ICD). Unlike a traditional pacemaker, which mainly sends pacing signals to regulate heartbeats, an ICD is specifically designed to identify and correct potentially fatal rapid arrhythmias by administering electrical shocks. Although my insurance initially refused to cover the costly device, Dr. Mahoney managed to secure approval after submitting several appeals.

Thanks to the ICD, I was able to keep working, but my health kept deteriorating, and I realized that my difficulties were only beginning. After the device delivered several shocks – a truly terrible experience – my doctor prescribed Sotalol. This drug is part of the antiarrhythmic family and is classified as a non-cardioselectivity beta-blocker with potassium channel-blocking effects. Essentially, it modifies nerve signals in the heart and elsewhere, slowing and regulating the heart’s rhythm. As I collected the medication from the pharmacy, I prayed it would prove effective.

Not long after starting the treatment, I suffered one of its potentially fatal side effects. Sitting in a rocking chair at the back of the classroom, grading my freshman students’ Romeo and Juliet skits, I was engrossed in the first group’s performance when suddenly I blacked out and missed the rest of the act. When I regained consciousness, still seated in the chair, I applauded along with the class. Throughout the remaining presentations, I drifted in and out of awareness. Fortunately for the students, I awarded everyone high marks since I had no real sense of how well they had performed.

Following the class, I headed straight to the nurse to explain what had happened. She promptly scolded me and urged that I go to the hospital immediately. I contacted my friend Terry, who gave me a ride to the emergency department. There, the doctors performed several tests to determine the cause of my condition. Much to my dismay, they informed me that I was allergic to the medication, which had triggered a severe ventricular arrhythmia—a dangerous abnormal rhythm originating in the heart’s lower chambers. This condition carries the risk of sudden cardiac arrest. Consequently, I was admitted to the hospital for a week to gradually stop the medication and seek a workable treatment for my heart problems.

Several months later, I fainted again while at work. This time, an ambulance was called to rush me to the emergency room. After undergoing blood tests, an electrocardiogram, and an MRI, I awaited the results alone in the emergency cubicle, as Ericka was still at work. Eventually a young doctor entered and delivered my diagnosis in a monotone voice: “It appears you are experiencing heart failure. Do you have any questions?”

Did I have any questions? Was he serious? My mind was flooded with countless queries, yet overwhelmed, I couldn’t voice a single one. I merely stared at him with a blank expression before quietly replying, “No…. thanks.”

After receiving my new diagnosis, Dr. Mahoney felt he was no longer the right doctor to manage my care. He advised me to consult the heart transplant specialists at the Nebraska Medical Center. Although overwhelmed with fear, I contacted the department, shared my diagnosis, and sought their guidance. They referred me to Dr. Hyden and arranged a thorough evaluation to examine my overall health. Following routine cardiac tests – including blood work, an echocardiogram, an electrocardiogram, and a stress test – Dr. Hyden determined I was a suitable candidate for a heart transplant. Despite my father having a heart transplant years before, the thought of undergoing it myself made me feel queasy. Still, I consented to undergo further assessments.

In the ensuing weeks, I participated in multiple appointments at Nebraska Medicine, including pulmonary function tests, a psychological evaluation, and a heart catheterization. Whether fortunate or unfortunate, depending on perspective, I was ultimately deemed an appropriate candidate for the transplant. Dr. Hyden scheduled several further consultations to explore my options before placing me at the bottom of the transplant waiting list.

As I gradually advanced on the waiting list, I underwent surgery to correct the improperly implanted ICD. Once that issue was resolved, various medications were prescribed in an attempt to mitigate the impact of heart failure on my other organs. When these measures proved ineffective, the decision was made to implant a Left Ventricular Assist Device (LVAD). This procedure took place in 2019, after which I spent eight months effectively immortal, provided I remained connected either to an electrical outlet or to a pair of batteries roughly the size of VHS tapes, albeit considerably heavier.

On the night of January 10th, 2020, I was sound asleep when my phone suddenly rang. Awake and convinced this was the awaited call, I quickly reached for my phone on the nightstand, slamming my hand down in urgency. In my flustered attempt to press the green button and answer, I accidentally ended the call instead. Overwhelmed with panic, I scolded myself and began to hyperventilate. Ericka immediately got out of bed, switched on the light, calmly soothed me, and helped me re-dial the number that appeared on my screen.

"Hi, this is Tara. Did you just try to reach me? I’m terribly sorry for hanging up on you!" I all but shouted into the phone.

"Let’s take a big breath, Tara," came the voice on the other end. "This is Alicia from the transplant center, and we have a heart available for you." After explaining some details about the heart that I no longer remember, she asked the all-important question, "Do you accept this heart?"

As her question hit home, I couldn’t imagine saying no—after all, the gift of a new heart represented not just a chance at survival, but a profound opportunity to embrace life anew. Also, knowing that this precious organ was coming from another person’s loss made the decision feel even more profound. Despite being more afraid than I had ever been in my fifty-three years, I knew that to refuse such an offer would mean giving up the one chance I had of seeing my children grow up.

Softly, I answered, "Yes." In that instant, time appeared to freeze as a rush of feelings—relief, nervousness, and deep thankfulness—flooded my being. The long wait, the uncertainty, and countless prayers had all led to this transformative moment. Nurse Alicia calmly walked me through the upcoming steps, the schedule, and what to anticipate upon arriving at the hospital, offering comfort amid the chaos of my thoughts. That late-night call was more than just news; it was a symbol of hope, signaling the start of a fresh chapter and the opportunity for renewed life.

The rest of that night is a blur. Overwhelmed by fear, my mind shut down during the ride to the hospital, where my future remained unknown. Unlike movies, where the procedure might end with me waking up and warmly chatting with loved ones a few hours later, my reality was quite different. I spent days engulfed in a haze of medication, lying helpless in the ICU, connected to more IVs and monitors than I had ever encountered. Yet, when I finally comprehended that my heart transplant had succeeded, an immense joy overwhelmed me—a powerful fusion of relief, gratitude, and exhilaration. After enduring years filled with doubt, medical exams, and moments of terror, learning that my body had embraced the new heart felt like a miracle. I recalled the many prayers, the steadfast support of family and friends, and the extraordinary commitment of the healthcare team who made this dream a reality. In that instant, every hardship, every injection, and every hospital visit seemed to vanish in significance, replaced by growing hope and deep gratitude for the precious gift of time. It was as if the world had unfolded before me once again, brimming with infinite possibilities and the vibrant beat of life pulsating steadily within.