✨ The Silent Fears of a Heart Valve Patient ✨

Giving words to the worries I carried inside.

I talk a lot about hope and second chances, but the truth is I carry fears with me too. They don’t always show, because I’ve done a lot of hard work to move past them. Some days I rise above them, other days I wrestle with them, but they’re part of my story. Here are the fears that shaped me and what I’ve done to keep moving forward:

1. Fear of the Unknown I was once told, “there’s nothing more we can do.” I was placed on hospice care, not knowing if I’d live to see another season. Even now, every new test or strange symptom makes me wonder: what if this is the one that ends it? 

➡️ What helped me: I leaned into faith and asked questions until I understood my choices. Learning more and speaking up gave me back a little control over the unknown.

2. Fear of Losing Control There was a time I felt like a fixture in my own home. I couldn’t even cross my living room without help. My husband and two adult children carried me. My son cared for his dad, who was fighting his first round of cancer at the same time, while my daughter drove me to out-of-state doctor visits we prayed would give us answers. Losing my independence made me feel like I was disappearing piece by piece. 

➡️ What helped me: I learned to accept help without shame and celebrate small steps of progress. Each time I walked a little farther or managed something on my own, I reminded myself that control can return in pieces.

3. Fear of Being a Burden Sometimes I look at my family and wonder, am I asking too much? Caregiving is heavy work. My husband was fighting cancer, my children were juggling their own lives, and still they were carrying me too. I never want my survival to feel like a weight on the people I love most. 

➡️ What helped me: I started talking openly with my family about how I felt. They reminded me I wasn’t a burden, I was loved. That honesty helped me let go of some guilt and focus on healing.

4. Fear of Being Forgotten or Unheard In all the support groups I found (2017–2020), I never saw much if any talk about tricuspid valve disease. It felt like others didn’t understand or talk about what I was going through. My doctors were kind and supportive, but they couldn’t fully know what it was like to live inside my body. I felt invisible. 

➡️ What helped me: That silence became my fuel. I turned my frustration into advocacy so no other patient with tricuspid valve disease would feel left out of the conversation again.

5. Fear of Time I spent two years in hospice, waiting for something, anything, to change. My world shrank to a single chair in my living room. That waiting felt like time was slipping away, stolen day by day. Even now, I fear running out of time, not just for myself, but for other patients still waiting for hope. 

➡️ What helped me: I began using my time with purpose mentoring, sharing my story, and building community. Instead of watching the clock, I try to make each day count.

💬 These fears don’t erase courage they walk side by side. The difference now is that I’ve learned how to name them, share them, and not let them control me. That work has given me strength, and it’s why I keep showing up for myself and for others.

👉 What’s a fear you’ve faced that pushed you to grow stronger?

#HospiceSurvivor #PatientVoice #HeartBridgeCollective

#PatientAdvocacy #SelfAdvocacy #Heart2HeartTalk