Yesterday, I had a candid conversation with the VA social worker who manages the VA’s caregiver program. She informed me that my personal blogs and anecdotal updates aren’t considered sufficient—they want input directly from my doctors. However, I believe my dialysis team is uniquely positioned to provide meaningful insights, given the daily data you receive from my cycler and your frequent interactions with me. You see me and my health trends more consistently than any other provider.
My Current Health: The Data and My Experience
To put it plainly, I feel like I’m on a downward slope—a negative first derivative, for those who appreciate a mathematical analogy. My physical abilities are declining: walking any distance has become a challenge, my knees are stiff, and I often have to pause after standing to regain feeling in my legs and feet. Even minimal exertion leaves me winded and needing to rest.
Dialysis now ties me to the cycler for over 10 hours each night. While I used to be someone who never napped, I now find myself dozing off in the afternoons without even trying. Fatigue is a constant companion.
Increasingly, I rely on Linda for support in daily life—meals, laundry, taking care of Dickens (our Golden Retriever), making decisions, and providing rides. This growing dependence is a direct result of my declining health.
(For those less familiar with calculus: the first derivative measures the rate of change. A negative value means things are getting worse. In this analogy, I am the function, and my health is trending downward.)
Looking Ahead: Questions for the Care Team
Linda will be joining me at our next team meeting with Dr. Turner on June 19. She has a growing list of important questions, including:
- What support services are available for dialysis patients in our area?
- Given the data, which suggests I have an average of 11.6 months to live, what is your perspective?
- Can we review my medications? It seems overdue.
- What has been your experience with caregiver requirements for patients like me?
I’m sure more concerns will arise before our meeting next week.
Why This Matters
I share this not just for myself, but for my care team. Your ongoing monitoring and feedback are vital. The numbers from my cycler and your observations are the most objective record of how I’m doing. My hope is that, together, we can address these changes proactively and ensure I have the best support possible.
Thank you for being my window into the medical side of this journey.
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