As we near the end of this incredibly challenging year, I want to address one of the toughest, non-physical aspects of managing LVSD 20% and NYHA Stage IV: The constant need to advocate for yourself.
When I traveled, I made sure I learned basic phrases and understood local laws. In my current life, the "local language" is medical jargon and the "local law" is bureaucratic procedure (as I touched on with the financial post). Because my heart is functioning at just 20%, I cannot afford to be passive.
When Symptoms Become Language
When you have Stage IV heart failure, your symptoms are your primary way of communicating needs to the medical team. But anxiety and fear can scramble the message.
I’ve had to learn how to communicate effectively, especially when speaking to my GP or specialists, or interacting with the Community Care Team:
Be Specific, Not Vague: Instead of saying, "I feel bad," I now use clinical observations: "My weight is up 1.5kg since yesterday," or "My breathlessness (dyspnea) scale is now a 7/10 at rest." This factual language cuts through ambiguity and triggers the correct response.
The Power of Paper: I ensure that the Community Care Team has a copy of my most recent medication list and my emergency plan. When I was housebound last Friday, having this documentation ready was essential to a smooth handover.
Insist on Understanding: The medical world is full of acronyms ($\text{LVSD}$, $\text{EF}$, $\text{NYHA}$). Never agree to a treatment or prescription you don't fully understand. My life depends on this knowledge. If I don't know why I'm taking a drug or what a change means, I stop the conversation until it's clear.
Advocacy as Energy Management
Fighting for care takes immense energy, which I barely have. Therefore, I must choose my battles wisely.
Pre-Plan the Conversation: Before any appointment (even a virtual one), I write down my three most important questions. This ensures my limited focus is used efficiently, and I don't forget crucial information when brain fog sets in.
Delegate When Possible: This is the benefit of the Community Care Team. They are often excellent advocates. I give them permission to speak on my behalf or communicate details to a doctor, saving my own breath and energy.
If you are facing complex illness, remember: you are the most critical member of your own care team. Your voice is your most powerful tool. Use it clearly, precisely, and often.
What is one specific question or piece of medical information you wish you had known earlier about your condition?
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