Instinct is often the best guidance we can have. For an invisible disease, the patient has the most significant insight into what’s going on with their body. Learning to trust those hints can be lifesaving in times where professional counsel and the patient’s instinct don’t match up. Our talk today focuses on not being afraid to trust your voice in leading your heart failure journey.
Instinct is often the best guidance we can have. For an invisible disease, the patient has the most significant insight into what’s going on with their body. Learning to trust those hints can be lifesaving in times where professional counsel and the patient’s instinct don’t match up. Our talk today focuses on not being afraid to trust your voice in leading your heart failure journey.
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 Tina Marie Marsden. Tina shares her heart failure journey through writing the Pretty Lady Chronicles, a blog series. Her blog touches on experiences of Peripartum Cardiomyopathy (PPCM), congestive heart failure, and managing life with an LVAD. In addition, she is an advocate for women and shares her perspective as a black woman to help others in the journey feel less isolated. First, she talks about what sparked her blog, then goes on to share why she started Sistas with Heart for her Heart Sistas.
Tina’s belief in herself is absolutely contagious. Her close support system, including her mother and her colleague-turned-friend Michelle, joins the conversation ready to share the impact of Tina’s health journey in their lives. Audience members discuss dual transplant stories, heart device facts, and decisions related to heart failure procedures. Also, a few Heart Sistas in the live audience share their own advocacy efforts. From a nonprofit leader to a cardiac nurse, the Heart Sistas have an abundance of inspiration to share.
Tina emphasizes the need and right to speak up when you feel something is off with your body. Listen as she shares lessons on recognizing seemingly harmless symptoms, managing your voice not to be dismissed or disregarded, and working with care providers as a team effort. Enjoy the real-life tale of a Pretty Lady vs. Heart Failure.
Timestamps:
[03:12] - Tina Marie Marsden explains where the idea for the Pretty Lady Chronicles came from.
[07:12] - Tina says she was shocked with her diagnosis at 28 years old after having an active life for so long.
[10:52] - Before diagnosis, a couple of symptoms Tina remembers are shortness of breath and fluid retention. What was the final sign?
[15:16] - Tina and Bouba talk about looking into family history to understand heart failure. Do genetics always connect to present heart failure?
[20:00] - Tina shares her perspective on how her identity as a black woman impacts her health journey. She discusses viewing care providers as a team going towards the same goal.
[26:53] - What is it like to have an LVAD (Left Ventricular Assist Device)?
[33:32] - Michelle, Tina’s colleague, says she didn’t know about Tina’s heart condition at first. She talks about trying to show up for Tina as a friend.
[39:57] - Why does Tina choose to be a proactive advocate for heart failure?
[47:13] - You are the MVP of your life.
[53:45] - How does LetsTalkPPCM impact the community?
[01:00:33] - What is it like to have a heart condition as a medical professional, especially a cardiac nurse?
[01:09:47] - Women impact everyone in society, so it’s valuable to listen to their stories.
Links/ Resources:
Heart of a Giant
Heart of a Giant Foundation (HGF)
Tina Marie Marsden
Pretty Lady Chronicles Blog
Sistas with Heart
Instagram | Facebook
LetsTalkPPCM
LetsTalkPPCM