Heart Failure or Heart Disco?

Living with Heart Disease

Receiving a heart disease diagnosis throws you into a winding journey of information. Suddenly there’s a lot to catch up on, and while this can seem daunting at first, you start to find a rhythm as you learn. Our talk today focuses on what is helpful to know earlier in the journey so you can ease into a rhythm of your own more quickly.

Welcome to Living with Heart Disease, a Heart of a Giant production. Is it possible to live a longer quality of life after a heart disease diagnosis? Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share the challenges and triumphs. Discover what it really means to survive and thrive with a heart condition.

Today’s main guest is Melany Pertile. Melany is the mind and motivator behind the Instagram page @heartfailuregroup. Her positive and humorous perspective towards her heart disease diagnosis helps build hope for herself and others. She talks about her belief in self-advocacy for getting proper care, and the importance of having advocates in your support system.

Melany is one of the Heart Patients that will be sharing their real-life stories in a series of unfiltered conversations with inspiring voices. Each person talks about their unique stories, and shares their commitment to heart health and how they commemorate resilience in the face of adversity.

Similar to her brighter take on heart disease, Melany poses the idea to rebrand “Heart Failure” into “Heart Disco”. We discuss ejection fraction measurements, assessments for an earlier diagnosis, and staying physically active. Expressing information about heart disease is a constant education, and constant conversation. Listen to this episode to hear terms you should know early in your diagnosis, what it means to communicate with care providers as an advocate, and creating a new relationship with life after a diagnosis.

Time stamps:

[02:47] - Melany Pertile says there’s so much positive information to share and give hope with.

[05:11] - Melany finds that humor helps in the midst of being overwhelmed with a heart disease diagnosis.

[07:40] - Why is it important to have an advocate during your journey?

[13:56] - Bouba shares a story of why you should self-advocate for having a fitting team of medical professionals.

[16:27] - Melany describes the difference in access while living in a rural area seeking quality healthcare providers.

[21:05] - Melany talks about her life before her heart disease diagnosis.

[26:01] - Laura, Melany’s sister, says she is inspired by the way Melany positively handles living with heart disease.

[28:46] - Laura gives her perspective of being an advocate for patients, including doing so for her family.

[36:28] - How does Melany manage her diet?

[43:40] - What is Heart Disco? Listen to Melany’s thoughts on changing how heart failure is discussed.

[46:29] - How can you set boundaries with friends and family while living with heart disease?

[49:07] - Melany encourages everyone to find the balance between education and empathy when being transparent with the people in your support system.

[53:19] - Bouba says he began to improve the way he presents heart disease after proactively having to explain it so many times.

[56:19] - Expressing heart disease is a constant education, and constant conversation.

[58:11] - There are multiple specialists within Cardiology, so be mindful of matching with a professional for your specific cardiology issue.

[01:04:39] - What is the Sarcomeric Human Cardiomyopathy Registry (SHaRe)?

[01:06:40] - Listen to these specific examples for terms, screening, and life management of living with heart complications.

[01:08:41] - Bouba goes through pictures of living and thriving with heart disease.

[01:17:10] - It’s Heart Disco not Heart Failure.

Links/ Resources:

Heart of a Giant
Heart of a Giant Foundation (HGF)

Melany Pertile
@heartfailuregroup