top of page
Search
Becoming the Long-Term Data: 5 Years After My EVOQUE Tricuspid Valve (TTVR) and What Comes Next
January 2026 marks the start of my fifth year living with the EVOQUE tricuspid valve, which I received through the TRISCEND II...
Oct 233 min read
When Frustration Becomes Data: A Simple Act of Patient Advocacy
A reminder that every reaction, emotion, and question tells a story worth hearing. There's a moment in every care journey when you feel...
Oct 143 min read
The Everyday Battles That No One Sees
The unseen moments that define what it means to keep going. At one point in my journey, my whole life felt ruled by lab results. Every...
Oct 92 min read
A Toddler of Fluid? Hospice Diary Note
A look at the real truth of living and sometimes laughing through hospice. When I was in hospice, I kept a diary. It became my way to...
Oct 72 min read
A Mother–Daughter Journey Through BRCA2
Walking side by side through surgery, caregiving, and hard choices. I had posted previously about testing positive for the BRCA2 gene ....
Oct 22 min read
✨ 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....
Sep 303 min read
My Backyard Therapy ~ a little love letter from my heart to yours
There are hours you can count and hours you can’t, the kind that fold into one another until days feel like a single long breath. I...
Sep 253 min read
What if ‘We don’t know’ isn’t the end of your story — but the beginning?
The words hit you like a wave: “We’ve run all the tests, and we just don’t know what’s wrong.” For a long time, I thought those words...
Sep 232 min read
Not a Lab Rat. A Patient With a Voice.
Living through a trial taught me the truth and why patients need to be heard . I never gave clinical trials much thought. In my mind,...
Sep 162 min read
The Day My Body Gave Out in a Grocery Store
💔 A Moment I’ll Never Forget. Right before I went into hospice, I could feel my body getting weaker every day. Still, I tried to keep...
Sep 111 min read
The Guinea Pig Myth: Myths vs. Facts Every Patient Should Know.
I spent two years on hospice because my tricuspid valve disease had no good options. Surgery wasn’t possible for me, medicines weren’t...
Sep 93 min read
My Heart's Journey: Living with AFib and A-flutter
How Heart Valve Disease Taught Me to Listen to My Body's Other Rhythms Hey everyone, you know I'm a big advocate for heart valve disease...
Sep 42 min read
AI Mapped My Heart—But My Doctor Saved it!
Data Shapes the Plan. Doctors Shape the Outcome. AI helped map my heart during my EVOQUE valve procedure —but it didn’t save my life. My...
Aug 261 min read
Clinical Trials: From Dark Spots to Safety Rules
Learning from the Past to Protect You. We’ve all heard about new medicines that help people live longer and feel better. Some can even...
Aug 53 min read
How Many More Will Die Waiting for a Cure That’s Stuck in Testing?
Every life-saving treatment starts with a clinical trial . You can’t approve a cure no one is willing to test. I didn’t say yes to the...
Jul 172 min read
Not Just Bloating—This Was a Full-Blown Crisis
My scale decided my dose. My labs decided my life. No one prepares you for the mental load of managing fluid overload. Every ounce...
Jul 152 min read
Diary of a Dying Woman: I Was Drowning From the Inside Out—And No One Believed Me
April 17, 2020 – From my hospice diary: I’m back in the hospital—swollen, tired, and uncomfortable. My legs feel heavy and tight. My feet...
Jul 102 min read
My Rent or My Medicine: No One Should Have to Choose
People are breaking down in Facebook comments—because they can’t afford their Eliquis. It’s hard to read.Some are skipping doses.Others...
Jul 82 min read
Women Were Left Out of Research—And We're Still Paying the Price
Let’s talk about something that doesn’t get enough attention. Before 1993, most women weren’t included in medical research. Not because...
Jul 32 min read
Patient Responsibility: A Conversation We Need to Have
Being quiet won’t protect you—but being informed just might. If you're anything like me, you didn’t choose this health journey—but here...
Jul 12 min read
"If no one else was telling their story, then maybe I needed to tell mine. And maybe, just maybe, that would give others permission to share theirs too."
bottom of page