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đ What If the Treatment That Could Save Your Life Is Still Being Tested?
Hey friends, â¤ď¸â𩹠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¤ď¸â𩹠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
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đš Somewhere between MyChart and policy, we lose people.
Simply because connection was never the systemâs design goal in the first place. đą 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
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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
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Clinical Trials: Where the Follow-Up Breaks Down Before the Finish Line
Iâm not here to throw shade â just to shine some light. ⨠Clinical trials save lives.Iâm living proof of that. They give people like me a second chance when options run out.But even with all the science and structure behind them, trials still have a deeply human side that doesnât always get enough attention. What Iâve learned and what we talk about often at HeartBridge Collective is that connection can start to fade even before a trial ends. People move on.Coordinators cha
Nov 5, 20252 min read
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I Saved My Breath to Survive
I stayed silent just to keep breathing. Today, my words carry purpose. When youâre fighting for your life, you speak in survival.You write in whispers.You breathe between words and sometimes between syllables. Talking was hard and some days, impossible.Iâd pause mid-word just to catch air, or stay quiet to save what little I had.I had to choose them carefully, like spending the last coins of breath! Back then, breathing took all my focus, so I spoke in pieces.Short. Choppy.
Nov 4, 20252 min read
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âď¸ Hope Has Luggage Now
The invitation that changed everything. Because sometimes, the seat at the table is the miracle. Iâm so excited! We are headed to Dublin, Ireland for the #GHHUnite Summit đ The Global Heart Hub brings together people from all over the world who care about heart health â patients, caregivers, doctors, and researchers. We come together to learn, share ideas, and make sure patientsâ voices are heard. đŤ Why This Means So Much Itâs hard to describe what this invitation means t
Oct 30, 20253 min read
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đĄ Getting There Is Part of Care
Making Clinical Trials Easier to Reach and Easier to Live Through When I first tried to join a clinical trial, I had no idea how much time, travel, and hope it took. I drove to another state three times, chasing a chance at life.The first two trips ended in disappointment, a quiet, heartbreaking âno.â By the third, I was exhausted and scared, but hope wouldnât let me stop. That final trip changed everything. It gave me my second chance at life . My daughter took time off work
Oct 28, 20254 min read
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Healing Isnât a Solo Journey â Itâs a Bridge We Cross Together
When One Patient Reaches Out, We All Learn Something Thereâs something about walking beside another patient that opens your eyes all over...
Oct 21, 20253 min read
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The Day My Body Gave Out in a Grocery Store
đ A Moment Iâll Never Forget. Right before I went into hospice, I could feel my body getting weaker every day. Still, I tried to keep...
Sep 11, 20251 min read
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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 wasnât possible for me, medicines werenât...
Sep 9, 20253 min read
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Medical Innovation Is Moving FastâBut Ethics Needs to Catch Up đ¨
We are living in an extraordinary era for medicine. Every day, it seems we hear about new breakthroughs, from revolutionary medical...
Sep 2, 20253 min read
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Healing Didnât End With the ProcedureâIt Started With My Story
This isnât just a story about heart disease. Itâs a story about hope âand how a clinical trial saved my life and gave me a brand-new...
Aug 7, 20253 min read
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This Is the Gap No One Wants to Talk About
Why does care disappear when we need it most?The system stops at the procedure. We donât. They saved my lifeâand then handed me discharge...
Jul 24, 20252 min read
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Left at the Door: The Burden of Caregiving During COVID
How Pandemic Policy Redefined the Role of Family Caregivers I want to talk about a group of people who rarely get the spotlight but...
Jun 11, 20253 min read
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When Your Doctor Says Yes⌠But the PBM Says No
Why the people deciding your treatment arenât the ones trained to treat you. Right?! Itâs absolutely wild. Your medically trained doctor,...
May 29, 20253 min read
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This Is What Life After Hospice Looks Like
Advocacy wasnât the planâbut it became my purpose. Advocacy is deeply personal for me. Iâm a two-year hospice survivor living with...
May 28, 20253 min read
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Your Heart Talks Through SymptomsâAre You Listening?
Sometimes, the body whispers before it screams. Heart failure isnât just âyour heart is not working.â Itâs your lungs gasping. Itâs your...
May 21, 20252 min read
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Real Talk: Building My Second Chance Took a Village
I talk a lot about second chancesâbecause Iâm living proof they exist. But the facts are, I didnât get here on grit alone. It took a...
May 19, 20252 min read
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The Interview Every Patient Deserves
Questions Every Doctor Should Be AskedâBefore You Trust Them With Your Care I canât tell you how many times Iâve been let down by a...
May 15, 20254 min read
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From Barely Breathing to Truly Living â Why I Wonât Stay Quiet About TVR
Why am I talking about Tricuspid Valve Regurgitation (TVR)? Because talking about it creates change.Because sharing our stories makes...
May 14, 20252 min read
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"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."
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