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 working, and I was getting worse—swelling, shortness of breath, crushing fatigue.

Then I was offered a spot in a clinical trial for a transcatheter tricuspid valve replacement. I said yes. That decision gave me a second chance at life and more time with my family.

Here are some myths I hear all the time—and what was true in my experience:

Myth vs. Fact (from my journey)

Myth 1: “Trials are only for the sickest people.”My fact: I was very sick when I qualified, and the trial was designed for people like me who didn’t have surgical options. But not every trial is like mine—many studies include people at earlier stages or at risk. It depends on the trial’s goals and inclusion criteria.

Myth 2: “You’re a test subject with no control.”My fact: I had to sign informed consent after everything was explained in plain language—risks, benefits, visits, and my rights. I could leave the trial at any time. Saying yes did not mean giving up control.

Myth 3: “They’ll treat you like a guinea pig.”My fact: My care was closely watched. There were safety checks, scheduled follow-ups, and people to call with concerns. Every U.S. trial must be reviewed by an ethics board (IRB) before anyone enrolls. I was a patient, not a guinea pig.

Myth 4: “Trials are risky and that’s it.”My fact: There is risk—that’s real. But for me, the bigger risk was doing nothing. The trial offered a path when I had none. I weighed the risks with my doctor and family and chose the chance at more life.

Why I Said Yes

After two years on hospice, I didn’t have another option. Surgery wasn’t possible, medicines weren’t working, and I was only getting worse. When my doctor offered me a clinical trial, I said yes.

👉I said yes because I trusted my care team.

👉I said yes because my family and I wanted me to have a chance.

👉And I said yes because, even after everything, I still had hope, even though I really didn't know what for..

That trial didn’t just give me a procedure—it gave me time. More mornings with my husband. More laughter with my kids and grandkids. More chances to enjoy the everyday, ordinary moments I thought I had already lost.

That second chance is why I share my story—because every patient deserves the chance to understand their options and make their own educated choice.

Questions you can ask your doctor

• Am I eligible for any trials? What phase is it?

• What are the possible benefits and risks for someone like me?

• How many visits will I need and what happens at each one?

• What costs are covered by the study vs. my insurance?

• Who is the sponsor, and how is safety monitored?

• If I join, can I stop later? What happens to my care if I do?

I’m alive today because a clinical trial existed—and because I was given the chance to join it. If you’re considering a trial, you deserve clear information, real support, and the space to decide what’s right for you.

💬 Drop your questions or concerns in the comments. If you want to talk one-on-one with someone who’s been there, who gets it.👇👇👇

The HeartBridge Collective is a patient-led initiative. We are not medical professionals and do not provide medical advice, diagnosis, or treatment. Our goal is to share lived experiences and connect patients with resources—not to replace guidance from your healthcare provider. Always consult with your doctor or medical team for any health-related decisions.

#HeartBridgeCollective #PatientVoice #SelfAdvocacy #HospiceSurvivor #ListenToPatients #HeartHealth #Heart2HeartTalk #TricuspidValveMiracle #ClinicalTrials #ResearchMatters