DIAGNOSIS: Stay Away From a Mandoline
By Ailene Gerhardt, MA, BCPA, CSA®, Founder, Beacon Patient Solutions LLC & Navigating Solo Network
Host, The Navigating Solo™ Podcast
Introduction: Why This Perspective Matters
As a healthcare advocate, I’ve spent years guiding patients through complex systems, helping them make informed decisions, track labs, and navigate treatment options. Experiencing a serious health diagnosis myself has provided a profound opportunity to view the patient journey firsthand. It has reinforced lessons about communication, care coordination, and the human experience behind medical data. Insights I now bring even more fully to my professional practice.
Diagnosis and Hospitalization
In January, after years of iron deficiency anemia, my hemoglobin and hematocrit dropped to dangerously low levels. I experienced a cardiac event that required stent placement and a four-night hospitalization in a internationally renowned cardiac center. Four months later, my platelet count unexpectedly dropped to critically low levels, leading to a diagnosis of Immune Thrombocytopenia (ITP), an autoimmune condition in which the immune system attacks and destroys platelets, leading to a low platelet count and increased bleeding risk.
Hospitalization followed, including iron shots, a unit of blood, and steroid therapy. During this time, I observed firsthand the importance of coordinated care across specialties. The cardiac and hematology teams had different priorities and risks to weigh. The way they communicated, coordinated, and involved me in decisions provided a clear model of patient-centered care in action.
Outpatient Management and Monitoring
Since discharge, my care has included frequent blood draws, injections, and infusions. These interventions are essential to understanding and managing my condition, but they also illustrate the patient experience of repeated procedures and uncertainty. Each lab, infusion, or appointment is not just a data point—it carries physical, psychological, and logistical impact.
Tracking these interventions has reinforced a professional principle I’ve long advocated: maintaining detailed records empowers patients to participate actively in their care, spot trends, and communicate clearly with providers. Living this process has given me deeper insight into how patients experience what we often reduce to numbers and schedules.
Professional Insights
Several lessons have emerged from navigating this experience personally:
Patient-centered care includes human factors.
My clinicians sought insurance approval for an oral platelet-boosting medication so I could take it at home, minimizing hospital visits. This approach considered not just clinical outcomes, but the emotional, physical, and logistical impacts of treatment.
Documentation is empowerment.
Keeping organized records of labs, procedures, and interventions enables patients to see patterns, advocate effectively, and prepare for future care decisions.
The dual perspective informs advocacy.
Experiencing the uncertainty, schedule changes, and emotional toll of treatment deepens empathy and improves guidance I provide to clients.
Flexibility and adaptation are key.
Patients’ schedules, work, and routines often shift unexpectedly due to treatment or health status. Recognizing and planning for these challenges is a critical component of comprehensive care.
Reflections
Even small moments carry significance. One hematology clinician advised, “Stay away from the mandoline. Don’t go near a block of knives.” Beyond its literal meaning, it underscored how clinicians consider the patient’s broader context - safety, lifestyle, and mental well being - alongside medical management.
This experience has highlighted that medical data, procedures, and interventions are only part of the story. Understanding patients’ lived experiences, including their emotional and practical challenges, is essential to meaningful care.
Conclusion
Being both a patient and a healthcare advocate has been illuminating. It reinforces lessons I’ve shared with clients for years: meticulous tracking, clear communication, and empathetic, human-centered care are critical. Living these principles has provided insight, strengthened my professional perspective, and deepened my commitment to supporting patients as whole people, not just data points.