The Numbers Tell a Story
By Ailene Gerhardt, MA, BCPA, CSA®, Founder, Beacon Patient Solutions LLC & Navigating Solo Network
Host, The Navigating Solo™ Podcast
Introduction: Tracking as a Tool for Insight
Today marks my 33rd blood draw since my ITP diagnosis in mid-April. Twenty-seven of these were outpatient, and six occurred during two weekend hospital stays requiring intensive treatment.
For patients living with chronic or acute conditions, numbers: labs, platelet counts, infusion hours, often become the primary way of marking time, progress, and setbacks. Unlike the calendar, these data points carry not just clinical meaning but emotional and psychological weight.
From a professional perspective, this underscores an important advocacy principle: tracking numbers is not just administrative. It is a tool for empowerment, communication, and proactive care management.
Personal Perspective
Counting blood draws and platelet levels has become part of how I measure the journey. Each number represents more than a lab result. It reflects anxiety before a needle, relief when counts rise, and uncertainty when they fall. Beyond the medical significance, these numbers tell a story of perseverance, adaptation, and resilience.
Tracking these metrics also provides a tangible way to see patterns, responses to treatment, and milestones. For instance, recognizing trends in platelet counts or responses to interventions can help patients anticipate changes and prepare for upcoming procedures or adjustments in care.
Professional Insights from Lived Experience
Experiencing this firsthand has deepened my understanding of why I’ve long recommended thorough documentation to clients:
Patterns become visible.
Keeping a detailed record of labs, procedures, and interventions allows patients and clinicians to identify trends, anticipate potential complications, and adjust treatment plans proactively.
Communication is clearer and more precise.
Accurate data allows patients to share concise, reliable information with multiple providers, reducing errors and improving coordination across care teams.
Preparation supports emotional resilience.
Beyond the medical value, tracking numbers gives patients a framework for understanding their experience, reducing uncertainty and fostering a sense of agency in a system that often feels out of their control.
Progress can be acknowledged.
Recording and reviewing milestones helps patients recognize the resilience and effort inherent in managing a complex health condition, which can be validating and motivating.
Reflections on the Human Side of Numbers
What struck me most during this period was the humanity behind the data. My clinicians sought insurance approval for an oral platelet-boosting medication I could take at home, allowing me to avoid being tethered to the infusion center, as my hematologist put it. This consideration of how treatment affects a patient physically, emotionally, and logistically was just as critical as the clinical intervention itself.
The experience reinforced that numbers on a lab report are inseparable from the lived experience of patients. Each platelet count, each infusion, each appointment is entwined with hope, worry, and adaptation. Recognizing this is essential for any professional supporting patients.
Conclusion
As both a patient and a healthcare advocate, I’ve learned that numbers are more than data points. They are a map of resilience, progress, and lived experience. Documenting them not only informs clinical care but empowers patients to participate actively in their own health journey.
For professionals, this reinforces the importance of encouraging meticulous tracking, validating the patient’s experience, and integrating both data and human context into care planning.