"e-Patient Dave" deBronkart

 

Beating the Odds: 
e-Patient Dave's Unyielding Battle Against Kidney Cancer

From Diagnosis to Triumph, a Journey of Empowerment and Community Support

Introduction: A Harrowing Start

January 2007 was the worst month of my life. It started with a simple shoulder X-ray and ended with a diagnosis that shattered my world: stage four kidney cancer. My doctor called to say my shoulder was fine, but a spot on my lung, found by coincidence, led to further tests – CT scans, biopsies, and ultrasounds. The verdict was grim. The cancer had spread throughout my body, leaving me with a median survival of just 24 weeks. One night, I woke up at 1 AM, overwhelmed by the thought that I might not see my daughter's wedding or any future grandchildren. But amidst the shock and despair, a question emerged: What can I do to help myself? Thus began my journey as an empowered, engaged e-patient, seeking knowledge and support online to fight for my life.

1. The Unexpected Diagnosis

A simple shoulder pain led me to the doctor, but what followed was beyond my wildest fears. The incidental finding on my X-ray revealed something in my lung. After numerous tests, it was confirmed: I had stage four kidney cancer. The news was devastating, and my prognosis was dire. The thought of my impending death, of missing out on life's milestones, was almost too much to bear. But I knew I had to do something – anything – to fight this disease.

2. Turning to the Internet

Faced with a desperate situation, I turned to the internet for answers. I googled tirelessly, seeking any information that could give me a fighting chance. My search led me to a patient community, ACOR.org, recommended by my doctor. This online network connected me with others facing the same battle, providing invaluable support and advice. Suddenly, I wasn't alone; I was part of a community of fighters, armed with knowledge and ready to tackle my diagnosis head-on.

3. The Power of Patient Communities

Joining ACOR.org was a turning point in my journey. Within hours, fellow patients shared their experiences, recommended doctors, and suggested treatments. This community support was crucial, offering insights that only those who had walked the same path could provide. It transformed my outlook from isolation to empowerment, giving me the information I needed to make informed decisions about my treatment.

4. Embracing Patient Portals

One thing I appreciated about my hospital, Beth Israel Deaconess, was their patient portal. This online tool allowed me to access my medical records, read CAT scan reports, and view lab results. Though some of the information was over my head, I shared my password with family and friends who understood medical jargon better. Their help was invaluable, enabling me to stay informed and engaged in my treatment process.

5. High-Dose Interleukin-2

My treatment plan included high-dose interleukin-2, a physically demanding regimen. Thanks to my patient community, I was already familiar with this treatment and its side effects. This knowledge made me a more informed partner in my care, preparing me mentally and physically for what lay ahead. Conversations with those who had undergone the same treatment reassured me and provided practical tips to manage the challenges.

6. Managing Communication

The overwhelming support from friends and family, while heartening, became an additional burden as I struggled to keep everyone updated on my condition. To ease this, I turned to CaringBridge, a website that allowed me to maintain a journal. This platform enabled me to share updates at my convenience, reducing the stress of constant communication and keeping everyone informed and connected.

7. Tracking Progress

As treatment progressed, my focus was on one question: How’s it going? Without fancy tools, I used Excel to chart my tumor sizes based on radiology reports. Watching the tumors shrink on my homemade chart was a huge morale booster, making me feel actively engaged in my fight rather than a passive recipient of treatment.

8. The Impact of Patient Engagement

People often ask if patient engagement makes a difference. One of the first pieces of advice I received on ACOR was from a nurse who said that active involvement in researching your condition improves your outcomes. My experience validated this. Being informed and proactive about my treatment moved me above the median survival rate, a testament to the power of patient engagement.

9. A Remarkable Recovery

Six months after my diagnosis, my treatment concluded, and I had beaten the odds. I regained the weight I had lost, and two years later, I experienced the joy of walking my daughter down the aisle. My survival was not just a personal victory but also a testament to the power of patient empowerment and community support.

10. The Changing World of Healthcare

The internet has revolutionized healthcare, making it possible for patients to access information and connect with others like never before. Being an e-patient – engaged and empowered – is not an abstraction. It's a reality that all of us may face. When a health crisis hits, the internet provides tools and connections that can make a significant difference in our outcomes.

11. Knowledge Sharing

Online patient communities facilitate powerful exchanges of knowledge and information. Being part of these networks allows patients to learn from each other’s experiences, share insights, and support each other through challenging times. This collective wisdom is a vital resource for anyone facing a serious health condition.

12. Empowerment Through Information

Access to information empowers patients to take an active role in their care. Whether it's understanding treatment options, managing side effects, or tracking progress, being informed helps patients make better decisions and collaborate more effectively with their healthcare providers.

13. The Role of Technology

Technology, from patient portals to online communities, plays a crucial role in modern healthcare. These tools provide patients with access to their medical records, facilitate communication with healthcare providers, and connect them with support networks. Embracing technology can enhance patient engagement and improve health outcomes.

14. The Importance of Support Networks

Support networks, both online and offline, are essential for patients facing serious health challenges. These networks offer emotional support, practical advice, and a sense of community, helping patients navigate their journey with more confidence and less isolation.

15. Moving Forward

Looking back, my journey as an e-patient has been one of empowerment and resilience. The support and information I received from online communities were instrumental in my recovery. As we move forward, it's crucial to continue advocating for patient engagement and the use of technology to improve healthcare outcomes for all.

Conclusion: A Journey of Hope and Empowerment

My battle with stage four kidney cancer was the fight of my life. It was a journey marked by despair, determination, and ultimately, triumph. Through the support of patient communities, the use of technology, and a proactive approach to my care, I beat the odds. My story is a testament to the power of patient engagement and the potential of the internet to transform healthcare. As we embrace these tools and communities, we pave the way for better outcomes and a brighter future for patients everywhere. (e-Patient Dave Blog 2007-2011)