When the Body Betrays the Gift

This is the view out of my window as I finish typing this blog update about my current bout of rejection.

Nearly a year ago, I was fortunate enough to mark the fifth anniversary of my heart transplant during a tranquil retreat with the Eves, a remarkable group of women from my church. This milestone represented more than just a personal victory; it was a heartfelt moment of gratitude and introspection, enveloped by the love and encouragement of women who have supported me throughout my health journey. The calm atmosphere of the retreat created an ideal environment for exchanging stories, sharing laughter, and raising a small toast with moonshine shots, a reminder of the strength drawn from our community. As we came together, I was filled with a profound sense of renewal and optimism, celebrating not only the precious gift of a renewed life but also the deep connections formed through mutual fellowship and perseverance. This anniversary stood as a powerful tribute to the wonders of contemporary medicine, the strength of friendship, and the steadfast faith that sustained me through every obstacle.

In September, I started experiencing flu-like symptoms such as a persistent fever, overwhelming fatigue, and shortness of breath. Hoping it was just the flu or COVID-19, I used at-home tests, but both came back negative. This worried me because I’d already gone through three episodes of rejection before and knew how important it was to pay attention to my body’s warning signs. Still, I understood that rejection wasn’t a major concern at this stage, since effective treatments were available. I contacted Dr. Hyden, my transplant physician, who admitted me to the hospital for tests and a biopsy to confirm the rejection. With the culinary camp with my daughter scheduled soon, a significant event we had anticipated since spring, I hoped to be discharged in time to attend. My initial biopsy results fortunately indicated no signs of rejection, allowing me to proceed to camp with Josephine.

During my time at camp, I was surprised to discover that my second test revealed early signs of rejection, something I hadn’t expected. Dr. Hyden, always attentive and comforting, quickly modified my treatment plan and prescribed a month-long course of prednisone to control the rejection and lessen inflammation. Although the diagnosis was troubling, I believed we had detected the rejection soon enough to avoid a ten-day hospital stay for plasmapheresis. Confidently, I remained at camp with Josephine, energized enough to cook thanks to the high doses of prednisone. Naively, I assumed this fourth episode of rejection would be easily overcome.

However, when my prednisone was tapered from 60 mg down to 20 mg, the troubling symptoms of rejection resurfaced, vividly illustrating how crucial this medication is in managing my condition. Prednisone, a potent corticosteroid, is vital in suppressing my immune system to stop it from attacking transplanted organs or tissues. When the dose was higher, it kept inflammation and immune responses in check; reducing it, however, let my immune system become active again, which brought back the symptoms. By the time my follow-up biopsy occurred on November third, I anticipated the results would confirm rejection. Yet, once again, the initial test showed no signs of rejection. I was left incredulous, doubting my own symptoms, blaming my age and poor fitness, and criticizing myself for laziness. Since hospitalization for plasmapheresis wasn’t required, I chose to drive home to visit my mother in Sioux Falls.

On November sixth, my mother was scheduled to undergo a biopsy on a kidney mass, a procedure that stirred both anxiety and hopeful anticipation for clarity about her health. I felt deeply relieved and thankful to be able to join my sister and brother in supporting her at the hospital during such a delicate moment, providing much-needed comfort. My siblings usually take care of Mom, so they left after her procedure was finished. I stayed with her throughout her recovery and helped her get home safely afterward. Throughout the night, as I checked on her and ensured she had the necessary help, profound gratitude filled me. Living far away, I rarely get the chance to care for her regularly, so I treasured this precious time together.

The following morning, as Mom and I peacefully enjoyed breakfast in the den, my phone abruptly rang, breaking the tranquility with urgent news—I had to return to Omaha immediately. The seriousness of the situation became clear: I was suffering from acute heart rejection and needed prompt medical intervention. My mind raced, worrying over who would remain to care for Mom after my departure. Though reluctant to leave her alone, I accepted the necessity to go. Eventually, I learned that my daughter Sophia was on her way to stay with Mom, allowing me to pack and head back to Omaha for treatment. The cozy den around me blurred as I mentally prepared for the difficult path ahead, acutely aware that swift action was essential for my survival and hopeful recovery. After gathering my things, I embraced Mom tightly before entrusting her to Sophia and my highly capable siblings.

As I made my way to Omaha, a storm of anger and frustration roiled within me, intensifying with every mile as disbelief settled over the fact that my condition had worsened from a minor rejection to a severe one, causing damage to my heart. I kept revisiting the earlier biopsy results, questioning how the medical team failed to detect the warning signs that might have prevented this advanced stage. The bright windows and the seemingly endless stretch of highway reflected the suffocating walls I felt closing in around me as I thought about the damage that might have been avoided with timely treatment. Each vehicle passing by and every roadside sign seemed to reinforce my growing determination to find answers and fight passionately for my health. At that moment, the drive represented more than just reaching Omaha; it was a mental confrontation with my health’s reality and a vow to regain control over my body.

Although I knew fasting was required before having my port inserted, the irresistible allure of freshly baked cinnamon rolls got the better of me, prompting a stop at Vermillion’s Coffee Cup where I purchased a Cinnabon to eat as I drove. The warm, sticky swirl of cinnamon and sugar offered the perfect comfort before my upcoming ten-day hospital stay. Throughout the rest of the drive, I delighted in this sweet indulgence, my heart light with pleasure and amusement. Despite knowingly breaking the fasting rule, I couldn’t resist the small joy. I understood that since the procedure could be performed without anesthesia, this brief lapse wouldn’t impact my care. Contently finishing the last bite as I parked in the hospital ramp, I gathered my things and headed toward the check-in desk.

Before my port implantation, when I finally met Dr. Mezher, I casually mentioned that I had just eaten a Cinnabon prior to the procedure. His expression instantly soured with frustration, clearly displeased by my lapse in judgment. He gave me a stern reprimand about the foolishness of eating right before the procedure, explaining that this meant he had to perform it without anesthesia to prevent any complications related to my digestion and alertness during the process. I merely laughed off his concern, insisting I was unconcerned about skipping anesthesia since I had undergone similar procedures without it before. Still hopeful, he inquired how long it had been since I finished the pastry. I grinned mischievously and told him I had finished chewing it just as I parked my car in the hospital lot, which nearly caused his head to explode. Annoyed, he shook his head and left my cubicle to prepare for the procedure. My nurse arrived shortly after, and we both shared a laugh at the doctor’s expense.

Later as they wheeled me into the procedure room, the head nurse warmly introduced me to the dedicated team responsible for my care. Although Dr. Mezher hadn’t arrived yet, she introduced me to the lead resident, Mark, who would be carrying out the procedure and ensuring everything proceeded smoothly. Mark then introduced me to a young colleague nicknamed “Baby Resident Noah,” the newest team member, whose enthusiasm and eagerness to learn brought a lively energy to the room. I jokingly asked if all blame for any pain or mistakes would fall on the inexperienced Noah, which prompted hearty laughter from the staff. Meanwhile, the team busily measured and disinfected my chest where the port would be inserted and covered the area with surgical drapes. This attentive and compassionate group not only prepared the site meticulously but also helped ease my nerves.

Throughout the procedure, the team skillfully inserted my subcutaneous apheresis port with impressive speed and accuracy, all without the use of anesthesia, showcasing their expertise. While I didn't receive propofol to send me to LaLa Land, they administered fentanyl to ease the discomfort caused by the lidocaine injections. Despite experiencing no actual pain during the process, I found myself blurting out, “Dammit Noah!” at random moments, injecting a touch of humor into an otherwise tense atmosphere. Thanks to the team’s quick and efficient work, I managed to get through the procedure without the need for twilight sedation. The blend of their professional proficiency and my spirited interjections made the experience not only tolerable but unexpectedly memorable.

After the procedure, I was moved to the cardiac unit to begin my ten-day period of treatment and observation. The specialized port, intended to streamline repeated blood draws and facilitate therapeutic apheresis with greater ease and comfort, was central to this phase of care. After the nurses admitted me, took my vital signs, and recorded all necessary data, Jill from the apheresis team arrived to start my first plasmapheresis session. When Jill walked into my hospital room, her warm smile and gentle manner immediately calmed me. Having known her from previous encounters during rejection episodes, we easily fell into animated conversation as she prepared for the treatment, chatting like old friends reconnecting after some time apart. Her empathetic approach and soothing presence significantly eased the clinical nature of the procedure. We talked about family, favorite hobbies, and made jokes at the expense of “Baby Resident Noah,” which helped make the hospital feel warmer and more personal instead of clinical. Jill’s seamless blend of professionalism and heartfelt kindness not only made the treatment easier to endure but also reminded me of the healing power that compassionate human connection holds alongside medical care.

At ten o'clock, as I was preparing for bed, Nurse Riley entered to begin my Rituximab IV infusion, a follow-up therapy after the plasmapheresis I had earlier undergone. The usual calm of settling down to sleep was briefly disturbed by the soft whirr of the infusion pump and the faint antiseptic aroma as she meticulously attached the IV line. Rituximab, a potent monoclonal antibody, was being infused to specifically target the immune cells responsible for my illness, aiming to provide a more sustained effect following the immediate benefits of plasmapheresis. Although the infusion could last up to fourteen hours, I was aware Riley would come in every twenty minutes to increase the dosage. This frequent interruption would affect my rest, but at least the total treatment time would be limited to around four hours. Despite feeling irritation over the late-night procedure, I paused to contemplate the intricate balance of modern medicine, where advanced treatments intertwine with the quiet rhythms of hospital routines, finding an unexpected solace in the knowledge that this painstaking care was a vital step on the road to recovery, even as sleep slowly enveloped me.

On Saturday morning, when the on-call doctor arrived to discuss the reasons for my rejection, I had hoped for some clarity and reassurance. Instead, his use of complicated medical terminology and vague explanations only heightened my confusion and anxiety. He tried to clarify why the rejection did not appear on my initial test but was detected in the MMDX, yet I struggled to understand, overwhelmed by his confusing analogies and anecdotes. Rather than bringing comfort, his words left me more distressed, my thoughts flooded with mounting questions and fears. When I inquired about the damage reported to my heart, he confessed that he had not reviewed that aspect thoroughly and promised to provide more information the following day. His lack of clear communication left me feeling isolated, as though enveloped in a fog of uncertainty, intensifying the stress of an already challenging situation. After his departure, I turned to online research, but none of the information I found remotely resembled his incoherent explanation. Fear settled deeply, robbing me of rest throughout the day and leaving me sleepless that night.

In the morning, I nervously anticipated the doctor’s arrival, my thoughts swirling with doubts and hopes for clarity amid the uncertainty clouding my mind. Just as I stepped into the bathroom to freshen up, he knocked on the door, shouted “No updates!” and quickly turned away before I could ask him any questions. His sudden exit left me shocked and powerless, disappointment and bewilderment tumbling through me. In that instant, the silence filled with unresolved questions seemed heavier than all my worries combined, prompting a frustrated sigh of dismay. When the nurse entered, she echoed my feelings about his insensitivity, and together we shared a moment of sympathy over some Lorna Doone cookies.

Following my plasmapheresis procedure earlier that same day, I was overcome by extreme weakness and fatigue, a draining heaviness enveloping me. A few friends came by after church to visit, but once they left, I collapsed onto the bed and slipped into a deep, restorative sleep. When I awoke, sweat dampened my skin but I felt somewhat rejuvenated. The remainder of the day was spent sitting comfortably in my chair, watching Hallmark movies and snacking on the homemade banana bread Ericka had kindly brought from home. Throughout, I anxiously wondered when the Rituximab infusion would begin and hoped it wouldn’t be scheduled at night again. Unfortunately, my hopes were dashed as they initiated the IV at bedtime once more. As the medication flowed through me, my energy rapidly waned. Despite the nurse’s frequent visits, the combined effects of the treatment and emotional strain soon lulled me into sleep. Even with my concerns, I rested sufficiently and woke up feeling refreshed this morning. With renewed resolve, I committed to waiting for the doctor to finally receive answers to the questions that had been tormenting me.

This morning, I was fortunate to have a team doctor visit and take the time to address all my concerns, renewing my hope. She carefully detailed that my current rejection mirrors previous episodes, where my body developed antibodies against the transplanted heart. The plasmapheresis procedure, she explained, will remove these harmful antibodies and replace them with manufactured plasma containing beneficial antibodies to help stabilize my condition. She also reassured me that the damage noted in the report is merely a minor injury, one that should heal easily after treatment. Her composed confidence and deep expertise shifted my anxiety into optimism, providing me with a clear plan moving forward. It was a relief to recognize that I am not alone in this ordeal and that, with proper guidance and support, there is genuine potential for recovery and healing. The heavy weight of despair lifted swiftly, making way for a joyful day filled with visitors and happiness.

The prospect of spending another seven days in the hospital stirs a mixture of dread and hesitation within me; after all, hospitals, with their sterile environments and incessant medical noises, seldom evoke comfort or happiness. Nevertheless, amid the monotony and lingering uncertainty, I find a spark of hope knowing that the treatment I am receiving has successfully worked for me on three previous occasions. This reassurance transforms my hospital stay from a fearful ordeal into a purposeful path toward healing. Each day in professional care brings me incrementally closer to recovery, and this thought instills a quiet resilience during the toughest moments. Although I do not eagerly welcome the confinement and disruption to my daily life, my faith in the treatment’s effectiveness grants me profound peace and enough joy to face the coming days without complaint.

The view from my room helped me through my day of doubt.