top of page

Search


đ«Taken Off Diuretics at 69: Why the News Felt So Big
Why good medical news can still feel scary when youâve lived through heart failure Friday, I walked into my cardiology follow-up feeling pretty confident. Iâve been feeling really good. Like⊠good-good. More energy. More good days than hard ones. That stretch where you finally start to exhale and think, âOkay⊠maybe weâre steady.â So I expected a normal appointment. Maybe a âkeep doing what youâre doing.â Maybe a small adjustment. But what I heard instead? I was not ready for
6 days ago3 min read
Â
Â


Brain Fog After a Heart Event: The Part Nobody Warned Me About
Thereâs a part of the recovery manual thatâs missing. Hell, there is no recovery manual. After my heart event, my brain changed . And Iâm not talking about âoops, I forgot where I put my keys.â Iâm talking about a system failure . Iâm talking about the lights being on, but the wires being frayed. Iâll be in the middle of writing a blog⊠or sharing my lived experience⊠something I know in my bones⊠and then my mind goes blank. đ The word disappears. đ The thought disappears.
Jan 223 min read
Â
Â


ICH E6(R3) & Patient Experience
What the New Clinical Research Guidelines Mean for You Clinical research is changing. Here is what it actually feels like for you. When youâre a patient or a caregiver in a clinical trial, you donât care about "regulatory updates" or "global compliance." You care about whether the study fits into your life. You care about whether you feel heard, safe, and respected. đâ€ïžâđ©č There is a new global guideline called ICH E6(R3) that is currently reshaping the future of research.
Jan 211 min read
Â
Â


Why âMildâ Heart Valve Leaks Matter: A Guide for Patients
Tricuspid Valve Regurgitation, Explained in Plain Language Iâm listening to a non-invasive cardiologist  explain tricuspid valve regurgitation (TR)  grades, and I hear this a lot: âMildâ and âtraceâ are clinically irrelevant.They donât matter. I understand what that means medically .But hereâs the truth â it still matters to patients. Let me explain why đ đ©ș What Doctors Are Taught In medical training and guidelines: Trace or mild TR is very common Many healthy people have i
Jan 133 min read
Â
Â


Some roles in life find us long before weâre ready for them â and caregiving is one of them.
A reflection on love, responsibility, and learning to care for yourself while caring for someone else. I was caregiving long before I was able to consent to caregiving and simply because I loved my mom and I knew she needed help. I think one of the hardest parts of being a caregiver and someone who grew up in that role is youâre faced with understanding your own mortality, as well as others, very quickly. You quickly learn how complicated and unfair life is. You quickly learn
Jan 63 min read
Â
Â


Heading Into the New Year: What This Year Taught Me About Advocacy, Care, and Speaking đ
As this year comes to a close, Iâve been reflecting on the last 12 months of my personal life. A lot of it was heavy. A lot of it required honesty â even when I didnât feel ready for it. If Iâve learned anything this year, itâs this: life doesnât wait for us to feel ready. A Year That Didnât Pause âł This year, my husband Louis faced a cancer recurrence while I was dealing with my own cancer scare. There was no pause button.No moment where life slowed down so we could catch o
Dec 31, 20253 min read
Â
Â


Systemic Silence: Why Black Women Are Still Dying of Heart Disease
Our Most-Listened Episode of 2025 đ This episode showed up big on Spotify Wrapped â with 63% more listens than any other episode this year. And honestly, that doesnât surprise me. Because this conversation needed to happen. â€ïž Why This Episode Matters In this roundtable episode of Heart to Heart Talk, I sat down with Azure Burrell and Katherine Waddell to talk about an issue that still doesnât get the attention it deserves: Black womenâs heart health . đ« Heart diseas
Dec 25, 20252 min read
Â
Â


From Oxygen Tanks to Ocean Walks: Rachelleâs Second Chance at Life
Proof that healing is possible, even when the journey takes longer than expected. Rachelleâs story reminds us that second chances are worth the wait. First off, my name is Rachelle, and I'm thrilled to share my journey with you. Originally from Colorado, I now call Oregon home, and I'm grateful for the fresh start. I've always been passionate about exploring the mountains, and the views are simply breathtaking. However, it was during these adventures that I first noticed som
Dec 23, 20253 min read
Â
Â


When Rare Cancers Damage the Heart Valves (Carcinoid Heart Disease) and Why This Feels Personal â€ïžâđ©čđ„
Why awareness, earlier answers, and patient voices matter in carcinoid heart disease and valve care âš What I Learned Today I love sharing the things I learn along the way, especially when itâs something I wish patients were told sooner. Todayâs lesson? How some rare cancers can damage the heart long before anyone realizes whatâs happening and why this matters more than people think! Some rare cancers, like carcinoid tumors, can release too much serotonin into the bloodstream.
Dec 18, 20254 min read
Â
Â


The Hard Questions We Donât Talk About Enough đŹ
â€ïžâđ©č A patientâs perspective from someone who lived early feasibility When youâre one of the first people to receive a new heart valve, you learn pretty quickly that innovation is both a miracle and an evolving standard of care. I was an early feasibility EVOQUE patient â part of the group whose outcomes helped shape future FDA approval. The valve saved my life. But being in that first wave also meant stepping into a space where long-term answers were still being written. Th
Dec 16, 20253 min read
Â
Â


The Simple Tool Every Woman Should Use to Check Her Heart Health
Get a free personalized guide you can take straight to your doctor. Knowledge can be life-saving.And when it comes to heart valve disease, sometimes the only difference between catching it early or ending up in a crisis ⊠is knowing what to ask. I found a tool I really wish more people knew about â especially women. We get brushed off way too often as âtired,â âstressed,â or âjust busy.âMeanwhile, our hearts might be working twice as hard just to keep up. This quick assessme
Dec 11, 20251 min read
Â
Â


đ Show-and-Tell: What Patients Really Need to See Before Saying 'Yes' to a Clinical Trial
Some days, clinical trials remind me of show-and-tell back in kindergarten. Remember that? You didnât just talk  about your awesome toy â you brought it in! You showed it. You let people hold it, look at it, and ask questions to really understand what made it special. Honestly⊠I wish clinical trials were more like that. Before anyone tries to âexplain the benefitsâ or hands me a huge stack of papers with words I can barely pronounce, I want to see  â really see â what this t
Dec 9, 20253 min read
Â
Â


No Two Humans Are Alike â So Why Do We Treat Medicine Like They Are?
Your story, your chemistry, your care â no one elseâs body works like yours. Have you ever stopped and thought about how no two people are exactly the same?Not even identical twins. We might share the same diagnosis or take the same pill, but inside, our bodies work in their own way.Our genes, hormones, gut bacteria, past illnesses, and even how we handle stress make us unique.Thatâs what makes life interesting and what also makes medicine complicated. đ§Ź Medicine Talks in Av
Dec 4, 20252 min read
Â
Â


Why Healthcare Feels So Cold â A Patientâs Perspective
How a Century-Old Mindset Still Shapes the Way Patients Are Seen and Heard Iâve been thinking a lot about why the doctorâpatient relationship can feel so distant.And when you peel back the layers, it goes way back â more than a hundred years. Where This All Started Around 1910, the Flexner Report  reshaped medical training across the U.S.It pushed a strict âscience first, emotions lastâ model. By the 1920sâ1950s, that mindset had become the blueprint. Doctors were taught to:
Nov 27, 20252 min read
Â
Â


What Clinical Trial Data Canât Show â But Patients Can
Because lived experience explains the âwhyâ behind every statistic.  â€ïžâđ©č I canât shake this one line that keeps echoing in my head: âData comes alive through a real human story.â  ⚠It sounds like something youâd jot down during a meeting about âimpact,â right?But honestly⊠that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through đ Most of us bounce between two very different worlds. 1. The World of
Nov 25, 20253 min read
Â
Â


Caregiver Month: Honoring the People Who Carried Me Through My Hardest Season
When people hear my story, they often focus on the hospice part â the swelling, the breathlessness, the fear of not waking up the next morning. But thereâs a side of that season that doesnât get talked about enough: The people who kept me here. Because I wasnât the only one fighting for my life. As my heart was failing and the symptoms were spiraling, Louis was going through chemotherapy. Two sick people in the same home. Two battles happening at once. Survival didnât feel li
Nov 20, 20252 min read
Â
Â


đ„ If IRBs Want to Protect Us, They Need to Hear Us â All of Us
Iâve been thinking about something we donât talk about enough in the research world: Sometimes the very systems meant to protect us  end up silencing us . We see it with pregnant women being excluded from studies. But letâs be honest â it doesnât stop there. đ« Safety Shouldnât Mean Exclusion IRBs (Institutional Review Boards) exist to keep people safe. I respect that. Their mission is critical. But safety shouldnât mean exclusion. And protection shouldnât mean making decisi
Nov 20, 20253 min read
Â
Â
đ What If the Treatment That Could Save Your Life Is Still Being Tested?
Hey friends, â€ïžâđ©č I wanted to share something thatâs been on my heart â and honestly, a big part of why Iâm still here. Saying yes wasnât easy. It meant trusting a system that wasnât built for women like me.But that âyesâ gave me life â and a purpose to change what wasnât meant for me. â€ïžâđ©č Most Women Donât Realize How Left Out Weâve Been Itâs time to change that. Even though heart disease is the #1 killer of women , weâre still underrepresented in the research meant to sav
Nov 13, 20253 min read
Â
Â


đč Somewhere between MyChart and policy, we lose people.
Simply because connection was never the systemâs design goal in the first place. đ± Today I got a notification in MyChart â that little ping thatâs supposed to make managing your care easier. It told me to schedule my final clinical trial appointment. So, I followed the instructions. I scheduled my echo. A few minutes later, the phone rang â it was the clinical site coordinator asking to reschedule the appointment I just made. Turns out, the doctor assigned to my study is onl
Nov 11, 20253 min read
Â
Â


đ When the Data Becomes Personal: What a 0.25 mg Dose Means After 38 Years
Sometimes healing isnât loud â itâs one quiet change that means everything. When Dr. Beglin told me he was cutting my BUMEX  to just 0.25 mg every other day , I sat there shocked. I havenât been without a diuretic since 1987 , when I was diagnosed with idiopathic fibrosing mediastinitis  â a rare disease of unknown causes, that creates scar tissue to grow inside the chest, squeezing the lungs and blood vessels and making it harder for my heart to work. Back then, medicine was
Nov 6, 20252 min read
Â
Â
"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