What Happened When 60 Patients & Caregivers Met for “Patient Day 2017” at Edwards Lifesciences?

Something special recently happened. More than 60 patients and their care partners traveled to Edwards Lifesciences, a leading heart valve manufacturer in Irvine, California, to meet each other, to share their stories and to inspire action within our community – the heart valve patient community.

This day is appropriately called… Patient Day!!!!!

Luckily, Edwards asked us to attend Patient Day 2017 and film the wonderful moments of this unique event that included meet-and-greets with the heart valve assembly teams, panel and group discussions, a campus and manufacturing tour and more. My favorite part of the day was watching patients meet the Edwards employees who made their valves by hand.

Ready to see what happened at Patient Day? Watch the video below…

 

 

Thanks to the patients and caregivers who traveled – from near and far – to participate in Patient Day. And… On behalf of our community, I want to extend a mighty thanks to the entire Edwards team for empowering the patient voice at “Patient Day 2017.”

Keep on tickin!
Adam

P.S. Here is a written transcript of the Patient Day 2017 video:

Ronald Young: The doctor told me that the valve was going downhill. They gave me 12 months. When you get to the stage that you don’t think you’re going to go on much further.

Christine Rekash: I found that when I was going through my surgery and my diagnosis, there was very little information out there that was available.

Ron Nussle: When I was first diagnosed with aortic stenosis, to be honest, I didn’t know what it was. Something I’d never heard of and all of a sudden, there’s this thing that’s ultimately going to be life-threatening.

Joyce Shelby: I was scared. What would happen to my family? How could this happen? Why did this happen to me? There’s a sense of loneliness because people can support you, but does a person really understand what you’re going through?

Christine Rekash: I think it has to come from within, that your life does not end with your valve disease.

Joyce Shelby: This is part of who I am and what I’ve been through, and this is an opportunity to share stories and also to help others.

Mike Mussallem: Patient Day really is transformative for Edwards. It’s a chance for us to think deeply about what do patients care about, and so when we get a chance to learn more specifically from them, not their doctors, not their hospitals, not their insurers, but from patients themselves, that there’s a compass for us to think about where we go next.

Christine Rekash: Take a new lease on life, become involved with your community.

Joyce Shelby: That’s what community is about, something that you can share. That means so much to me. There’s nothing that you can put on that. There’s no price tag.

Rose-Marie Ann Scheel: I have a feeling of kinship with these people. We’ve traveled the same path. We are, in fact, a family.

Mike Mussallem:  One of the most meaningful things that gets to happen on Patient Day is when a patient gets to meet the sewers, the people that were involved in the construction of their valve, in person.

Ron Nussle:  Before the procedure, I couldn’t walk across the street. You turned my life around. What you folks have done, what you’ve put together – again, you think of it just as an object, but now the object has a face. You’ve done a great job. Thank you so much.

Socheata Iep:   I got the chance to meet my patient, and it made me feel amazing and proud of what we done, how important what we do is, not just what it’s work saving life.

Mike Mussallem:  Nothing is more incredible. To have a patient put their arm around you and say thank you, I’m here because of you, then I think that stays with you really for a lifetime.

Ronald Young:  Twelve months ago, I wouldn’t have thought I would’ve been here. I’m here. I feel great. Life is wonderful. All I can do is thank Edwards, and the doctor, and everyone else that looked after me.

Adam Pick
Written by Adam Pick

Adam Pick is a patient, author of The Patient's Guide To Heart Valve Surgery and the founder of HeartValveSurgery.com.

To learn how Adam has helped millions of people with heart valve disease, watch Adam's video, subscribe to his free newsletter, or visit his Facebook, or Twitter pages.

  • Ludmila Khalid

    Post per-fusion syndrome or “Pump Head”.
    Is there anyone who wold consider sharing own experience of this post operative condition.?

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