John’s Countdown

By Hadil Zureigat , MD, Third-Year Internal Medicine Resident, Cleveland Clinic , Aspiring Hematologist / Oncologist

The cases that stick with us as doctors are not always the most medically interesting. On the contrary, for me, they are rarely related to the underlying pathology. They are the ones where an interaction with a patient touches us on a personal level. I have come to realize that patients teach us so much more than we teach them. And the lessons we learn from them can change us forever.?

One of the more memorable stories that comes to mind involves a man in his 60s, whom I'll refer to as John. He was a distinguished professor — educated, soft-spoken, and remarkably kind. Every time I entered his hospital room, he was in bed either engrossed in a document or at his computer, with a large window offering a serene view of a garden outside. For more than three decades, John had battled Evans syndrome — a rare autoimmune disorder where his immune system attacked his own red blood cells and platelets, causing recurrent anemia and thrombocytopenia. Despite years of managing the condition with various treatments, including cutting-edge therapies, his recent hospitalization was different. His need for blood transfusions had escalated to the point of requiring multiple transfusions daily.?

John struggled to accept the terminal nature of his illness. He had lived with this condition for many years and viewed it like many other chronic illnesses — something that could be managed with the right interventions. I don’t believe he ever fathomed that it had the potential of ending his life. But a slower-progressing disease does not necessarily mean a better prognosis. He was on immunosuppressive agents and was getting transfusions sporadically. I don't believe he ever thought of a time when these agents would no longer be effective or when his transfusion needs would become this dire. His low counts, though they could be remedied with transfusions, were now a major barrier to him having any sense of normalcy.?

Initially, he would often say things like “I am a healthy man, my counts just run low” or “I’ve been dealing with this condition for years.” After explaining to him that there were? no more agents to offer, he made it his mission to look up every experimental agent or case report ever written on Evans Syndrome. We made sure, as a team, to never dismiss any of his suggestions, irrespective of how unrealistic they were. Every morning, we discussed every option he proposed, with me explaining why certain approaches wouldn't suffice given his circumstances. It was crucial for me that he felt listened to and empowered, especially as the reality of his condition settled in over time. He was dying, but it was a process that ensued gradually. It wasn’t that he was healthy one minute and dying the next. It was a slow burn, making it harder for him to realize where he was along his life’s timeline. As he was becoming more fatigued and limited in his ability to perform any activity without becoming very tired, he was starting to realize that he wasn’t as healthy as he thought he was. John could now see that the life he knew and enjoyed would no longer be possible.

As physicians, we are trained to preserve life, but seeing someone like John grapple with the inevitability of death was moving, challenging, and eye-opening. We did our best to tailor our approach to match his emotional state, to meet him halfway, and to offer support as we navigated this journey together. It was very important for me that John did not feel pressured or pushed to consider hospice. Gradually, he found acceptance and a measure of peace. I realized that John’s persistence stemmed not from denial, but from a desire for a sense of control over his fate. He eventually chose hospice. This lesson on the fragility of life taught me how important it is to preserve and maintain a patient’s hope, even — or especially — when their days are numbered.

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