エピソード
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Takeaways:
Coping is an active process that requires setting goals and taking control over the choices we face.
Balance is crucial in coping, and it involves managing stress coming into our lives and releasing it through physical exercise and relaxation breathing.
Sorting worries into three boxes (things we have control over, things we will have control over later, and things we have no control over) helps us focus on what we can change and let go of what we can't.
Making choices is inevitable, and every choice has positive and negative consequences. It's important to make the best choice with the information we have at the moment.
Preventing future regret involves imagining ourselves at our hundredth birthday and reflecting on what we would be glad we did or wish we did more or less of.
Releasing emotional energy through physical exercise and relaxation breathing can help achieve balance and stability in coping.
Coping requires practice, patience, and the use of tools and support from others. Emotional distress is a normal reaction and should not be pathologized.
Take inventory of what is getting in the way and identify practical solutions.
Coping with stress does not mean having no stress at all.
Embrace the uncertainty of life and focus on doing the best with what you have.
Sound Bites:
"Control is the core concept."
"Recognizing that a lot of what we worry about belongs in the box of things we have no control over."
"Every element of every decision has some element of choice."
"You can control what you can touch."
"The emotional exercise is something that I use on a daily basis."
"If I don't want to regret at my 80th birthday, I gotta come back to my 25th or 30th and really think about then."
Chapters:
00:00 Introduction and Background
10:20 The Three-Part Coping Process
37:11 Conclusion and Q&A
49:01 The Importance of Emotional Exercise
56:16 Using the Book as a Workbook
01:04:53 Doing the Best with What You Have
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Lewis Howe shares his journey towards optimal health and wellness, specifically focusing on living with hypertension. He discusses his diagnosis, the lifestyle changes he has made, and the importance of managing blood pressure. Lewis emphasizes the motivation to maintain good health for his children and future grandchildren. He also highlights the connection between mental health and physical health and the impact of his mental well-being on his overall health. Lewis concludes by discussing the perception of lifestyle changes and the positive effects he has experienced. In this conversation, Lewis C. Howe discusses the work of Heart of a Giant and the importance of making small changes for a healthy healthy lifestyle. He emphasizes the need to find a routine and balance and the benefits of preparing favorite foods with healthier ingredients. Lewis also highlights the importance of monitoring blood pressure and provides tips for accurate readings. He encourages individuals not to give up on their health goals and to make choices that show self-love. The conversation concludes with a call to action to join the Heart of a Giant community and care for one's heart.
Takeaways
Managing blood pressure requires making lifestyle changes and being consistent with them.Maintaining good health is important for oneself and the sake of loved ones.Mental and physical health are interconnected, and caring for both is crucial.Small changes in diet and physical activity can significantly improve overall health. Making small changes can lead to a healthy healthy lifestyle.Finding a routine and balance is essential for maintaining a healthy lifestyle.Preparing favorite foods with healthier ingredients allows for enjoyment without sacrificing health.Monitoring blood pressure and recording readings can provide valuable data for managing hypertension.Chapters
00:00Introduction and Background
02:53Diagnosis and Lifestyle Changes
05:35Managing Blood Pressure
09:21Motivation and Long-Term Goals
13:01Mental Health and Physical Health
22:09Perception of Lifestyle Changes
24:36Physical Activity and Optimism
25:14The Work of Heart of a Giant
26:28Making Small Changes
27:20Finding a Routine and Balance
28:30Preparing Favorite Foods with Healthier Ingredients
29:46Being Conscious of What You Consume
30:15Cooking for Yourself
31:17Taking Small Steps Towards a Healthy Lifestyle
32:01The Pleasure of Eating Healthy
33:29Enjoying Healthier Options
34:26Monitoring Blood Pressure
35:39Limiting the Damage
36:19Tips for Monitoring Blood Pressure
37:25Recording Blood Pressure Readings
38:27Taking Blood Pressure Readings in a Relaxed State
39:01Taking Multiple Blood Pressure Readings
39:28Recording Blood Pressure Readings
40:26Using Blood Pressure Readings as Data for Doctor Visits
41:23Not Giving Up on Health Goals
42:16Loving Yourself and Making Healthy Choices
43:32Enjoying Life and Making Healthier Choices
44:39Wrap-Up and Call to Action
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Timestamps
[00:02:41] Challenges caregivers face.
[00:08:25] The role of caregivers.
[00:10:56] Supporting caregivers' critical role.
[00:15:32] Medication adherence and tips.
[00:19:05] Timing of medication administration.
[00:24:23] Grounding techniques for self-care.
[00:29:20] Becoming an educated caregiver.
[00:33:37] Effects of self-silencing on caregivers.
[00:37:51] A cancer scare wakes him up.
[00:41:22] Caregiver support and resources.
[00:46:00] Navigating challenges of accepting care.
[00:52:29] Ubuntu and interdependence.
[00:54:00] Podcasters' final words.Detailed Synopsis
In this episode, the hosts delve into relying solely on internet research for medical information and the importance of trusting medical professionals. They share personal anecdotes and stories to emphasize the need for a balanced approach to health education. One host recounts her mother's doctor advising against getting stressed out by "Dr. Google" and going down rabbit holes. The hosts acknowledge the challenges of navigating the vast amount of online information but stress the significance of trusting the expertise of medical professionals and not becoming overwhelmed by excessive research. They highlight the importance of advocating for one's health while recognizing self-diagnosis limitations.
The hosts also express their appreciation for caregivers and the crucial role they play in the lives of their loved ones. They validate the feelings of self-doubt and pressure that caregivers often experience despite their exceptional efforts. The hosts understand the immense emotional toll caregiving can take, including feelings of overwhelm, distress, depression, and anxiety. They shed light on the social isolation that caregivers may face due to their responsibilities' time and energy demands, preventing them from engaging in other activities.
Furthermore, the hosts emphasize the symbiotic relationship between caregivers and patients, highlighting how the caregiver's skills and emotional investment significantly impact the patient's health outcomes. They stress the critical role that caregiver support plays in ensuring positive outcomes for heart patients.
Overall, the hosts validate caregivers' hard work and dedication, recognizing the emotional labor they invest in their role. They emphasize the importance of early understanding and support for caregivers on their caregiving journey.
In addition, the hosts discuss the societal pressure placed on caregivers, particularly women, to prioritize the needs of others over their own. They reference an article highlighting caregivers' tendency to self-silence and prioritize others. The hosts stress the significance of caregivers expressing their needs and advocating for themselves. They explain that self-silencing can have detrimental effects on the body, such as autoimmune disorders, and can contribute to feelings of overwhelming distress, depression, and anxiety. The hosts also acknowledge the self-imposed pressure that caregivers often feel to excel in their role and the potential for social isolation due to the demands of caregiving. Ultimately, the hosts emphasize the need for caregivers to prioritize their well-being and seek support when necessary.
Quotes
00:03:27 - "Often, patients require an advocate or certainly benefit from having an advocate with them as they navigate the healthcare system."
00:03:58 - "Sometimes, the caregiver may feel that they're not doing enough."
00:09:44 - "I mean, it's essentially a symbiotic relationship, right?"
00:11:06 - "I think that it's critical to feel part of a team."
00:14:20 - "However, I do find that most of the times people feel extremely, extremely guilty, but that should not be."
00:19:26 - "But if they're at the location of the thing that you do daily, it's more likely that the person may, well, will remember, and then it becomes part of that activity or that process."
00:23:35 - "Sleep deprivation certainly can negatively impact how a person can provide care for others as well as themselves."
00:27:35 - "I just want to tell all the caregivers out there that you know you guys are doing an amazing job."
00:29:20 - "No, no, no, you had chest pain when you were walking up, you know, like when we're going up the stairs, like tell them, tell them more."
00:33:52 - "Essentially, people get sick from not advocating for what they need."
00:36:08 - "And so just, you know, I'll give you one anecdote in terms of where the boundary wasn't the healthiest for the caregiver, and the caregiver could have adjusted it."
00:38:10 - "He takes accountability for his health."
00:43:59 - "I think it's important, like I know, like you know, people want to preserve their independence kind of, and they don't want to bother people, um, but you know, just like, I guess giving people a heads up would be nice you know in terms of your family members loved ones and hey you know I know if you feel comfortable of course sharing the information often, you know you may not feel comfortable sharing your personal."
00:46:41 - "I mean, I found that when I was caring for my mom, I realized that on days where things were difficult with her, my blood pressure would spike, you know."
00:49:54 - "I just want to make a quick comment. And just to emphasize what you just said, I think asking for help, whether you're the patient or the caregiver, is key."
00:53:31 - "We see you; you are doing your best, and thank you for that." -
Jodie Hall's story emphasizes the importance of putting oneself first and seeking support when facing health challenges. Her experience with congestive heart failure at a young age sheds light on the significance of early diagnosis and proper medical care.
At 19, Jodie discovered that she had congestive heart failure. Despite this diagnosis, she continued with her daily life, not fully understanding the seriousness of her condition. It wasn't until she was in her thirties that she noticed the symptoms and sought medical attention. This delay in recognizing the severity of her condition highlights the importance of early diagnosis and regular check-ups.
Jodie's journey also emphasizes the significance of seeking support from loved ones and medical professionals. When she was initially diagnosed, she faced the challenge of not being able to see her newborn son due to hospital regulations. However, her mother provided significant support during this time, ensuring that her son knew her identity and maintained a connection despite the physical separation
Throughout her journey, Jodie emphasizes the importance of putting oneself first and taking care of one's own well-being. She recognizes the significance of rest, stress management, and proper nutrition in managing her condition. By prioritizing her health and needs, she is better equipped to care for others and face the challenges that come her way.
In conclusion, Jodie Hall's experience with congestive heart failure at a young age highlights the importance of early diagnosis and proper medical support. Her journey showcases the resilience and determination of individuals facing health challenges. It serves as a reminder that it is possible to overcome adversity and live a fulfilling life with adequate support and mindset. By putting oneself first and seeking help from loved ones and medical professionals, individuals can navigate the challenges of a health diagnosis and find strength in their journey toward recovery.
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Meet Somaneh Bouba, a heart transplant recipient who has overcome tremendous challenges in his 6-year long heart transplant journey.As a dedicated husband, father, senior corporate manager and social entrepreneur, Somaneh has navigated his way through the complex world of heart transplantation with grace and resilience. His personal experiences have given him unique insights and perspectives on the challenges those recovering from a heart transplant face.
Navigating the complexities of heart transplant recovery.The crucial role of robust support networks during health challenges.Mastering medication management and side effect mitigation.The emotional rollercoaster post-heart transplant.Cultivating a grateful and positive mindset to weather any storm.
Join us as Somaneh shares his inspiring story and offers invaluable advice for fellow and future transplant recipients.
In this episode, learn more about:
Connect with me:
Instagram: livingwithheartdisease.podcast
Facebook: https://www.facebook.com/heartofagiant.foundation
YouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
Catch the bonus content on our Youtube channel.
https://www.youtube.com/@heartofagiantDid you enjoy this episode? A free way to support our show is by leaving it a rating and review on Apple Podcasts. It’s a chance to tell us what you love about the show, and it helps others discover the Living with Heart Disease podcast.
Apple Podcast
https://podcasts.apple.com/us/podcast/episode-10-inspiring-journey-from-heart-failure-to/id1567454596?i=1000608329515
Spotify
https://open.spotify.com/show/4aJeFMvnXyazgGuhR8A4Xs?si=6d9f19949f514714&nd=1
Chapter Summaries:
Time-stamped summary of this episode:
00:00:00 - Introduction,
Bouba Somaneh begins the podcast episode by thanking the audience for joining and introducing the topic, which is his own heart disease story.
00:01:25 - Bouba talks about his early diagnosis of dilated cardiomyopathy and how he managed to live with it through medication and lifestyle changes. He also talks about moving to Senegal, launching a business, and getting accepted into President Obama flagship’s Young African Leadership Initiative.
00:04:27 - Bouba talks about how his condition got abruptly worse a few days after arriving in the US for his fellowship and had to be put on the transplant list. He talks about the significant operations he had to undergo and the life changes he had to make, including moving with his wife to Boston and staying with his in-laws for a year.
00:12:38 - Bouba talks about receiving the call for a new heart on a Friday afternoon and how he everything to get to the hospital. He talks about the procedure and waking up two days later
00:15:41 - He discusses his recovery and ICU stay after his heart transplant,the intense monitoring in ICU, his struggles with blood pressure and balance, and passing out once in the hospital. He also talks about the attention and focus of the nurses and the patience required during recovery.
00:21:41 - Bouba discusses the medication and adjustments required after his heart transplant, including antirejection medications and vitamin intake. He talks about the importance of being aware of side effects and having a support system during recovery.
00:25:46 - The day before he got the phone call for the transplant, he received an offer for a new job which he accepted while in ICU. Bouba talks about negotiating his start date with his employer and the importance of proper operations and compliance for the Foundation.
00:29:15 - Bouba discusses the importance of having a solid support system during recovery, including managing children and helping them understand the transplant process.
00:30:05 - The joy of hearing his new heart and the excitement of others at the hospital. He notes that his kids visited the hospital to listen to his new heartbeat. They were amazed by the sound. These moments were fun.
00:30:38 - Bouba talks about the difficulty of being at the hospital away from his boys It was not easy for the boys, especially the younger twin, who had difficulty with the absence Thankfully, his attitude changed for the better once Bouba returned home.
00:31:22 - Bouba expresses gratitude for his medical team, friends, and family, and everyone who supported them during his recovery. He highlighted The Heart of a Giant at the Foundation team, who kept leading work. He had something to look forward to, which helped them stay positive throughout the process.
00:31:55 - Bouba talks about his plans for the future, including delivering at home, working on the Foundation, and helping others going through similar experiences. -
Ep 13: Battle of Heart Disease: Overcoming Obstacles with Armin Muzafirovic
The complex world of heart transplant surgeries and the road to recovery.Uncover the crucial role of a support system in managing heart disease and treatment.Third, empower yourself as a patient advocate to take charge of your own heart health journey.Finally, understand the urgent need for organ donors and increase awareness about heart transplantation.
Against all odds, Armin refused to let his diagnosis define him. But a ski trip to Colorado brought an unexpected twist, changing everything he thought he knew about his condition. What happened next was an ongoing battle, and Armin's incredible resilience kept him fighting every step of the way.
“In life, not everything is perfect, and sometimes we have obstacles that come our way...But being that rebellion that I was at 16, I didn't want to listen to healthcare providers. But as you physically see how your body is on the inside, when I saw my heart compared to a normal 17-year-old, I knew at that point that this is really serious.” - Armin.
Bouba sits down with his guest Armin Muzafirovic to talk about the ups and downs of his heart journey. Armin has navigated the challenges of living with heart disease since his mid-teens. His journey began with a diagnosis of muscular dystrophy, followed by discovering his heart condition. Despite these setbacks, Armin has remained determined to live life to the fullest, continuously seeking activities that push the boundaries of his physical capabilities. Armin's story offers a unique perspective on the impact of heart disease on daily life and how he has adapted to his new reality.
In this episode, learn more about:
Find out more about Armin here:
Instagram: https://www.instagram.com/armin.muza/
More from Living with Heart Disease:
Episode 5 - Life with an LVAD while waiting for a heart transplant
Connect with me:
Instagram: livingwithheartdisease.podcast
Facebook: https://www.facebook.com/heartofagiant.foundation
YouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
Catch the bonus content on our Youtube channel.
https://www.youtube.com/@heartofagiant
Did you enjoy this episode? A free way to support our show is by leaving it a rating and review on Apple Podcasts. It’s a chance to tell us what you love about the show, and it helps others discover the Living with Heart Disease podcast.
Apple Podcast https://podcasts.apple.com/us/podcast/episode-10-inspiring-journey-from-heart-failure-to/id1567454596?i=1000608329515
Spotify https://open.spotify.com/show/4aJeFMvnXyazgGuhR8A4Xs?si=6d9f19949f514714&nd=1
Chapter Summaries:[00:00:00] - Introduction,
Bouba introduces the podcast and guest, Armin, a heart transplant recipient, and sets.
The goal of the conversation is to understand a patient's perspective on living with heart disease.
[00:03:13] - Initial Diagnosis,
Armin discusses being diagnosed with heart failure in his mid to late teens, despite feeling healthy and athletic, and how it affected him and his plans for the future.
[00:06:23] - Ski Trip Incident,
Armin recounts a ski trip incident where he experienced shortness of breath, low oxygen, and a spike in troponin levels, leading to a mini heart attack and hospitalization. He also describes his symptoms of heart failure and the need for an ICD implant.
[00:09:27] - Managing Heart Disease,
Armin reveals his rebellious attitude towards being a heart patient, how he still played sports and lived life to the fullest despite his condition, and the importance of meeting strict criteria for treatments like pacemakers and ICDs.
[00:13:12] - Medical Complications,
Armin discusses the difficulties of managing heart disease, including the side effects of diuretics and the challenges of going to the ER for urinary problems. He also touches on the most prolonged surgery period during his ICD implant and the struggles of balancing school with frequent bathroom trips.
[00:16:18] - Hospitalization and Online Learning,
After being hospitalized for heart failure, Armin had to stay home due to edema and other symptoms. He had to call his school, where they had no prior experience with online learning. Armin managed to do his finals and pass with flying colors despite not being physically present for most of the classes.
[00:23:05] - Overexertion and Passing Out,
Armin passed out after overexerting himself while trying to pick up his brother from the bus stop. His feet were swollen due to edema. He fell unconscious and was shocked back by his ICD. He woke up in the hospital, and the doctors discovered that his leads were hitting his diaphragm.
[00:26:17] - Tachycardia and LVAD Surgery: During a car ride to the hospital, Armin had 40-60 episodes of SVT tachycardia, a severe heart failure symptom. After arriving at the hospital, he had an emergency LVAD surgery due to his low ejection fraction, dangerously low at 15-20%.
[00:29:27] - HeartMate 2 and RVAD,
Armin had both an RVAD and LVAD implanted with the HeartMate 2. He spent 33 days in the hospital and used Doppler machines to check his pulse. He was grateful to be alive thanks to the LVAD, but he knew he had a long road ahead.
[00:30:44] - Early Days with LVAD,
The guest recalls his early days with LVAD and describes how he felt constantly monitored and disturbed in the ICU. He mentions the challenges of sleeping and eating in the hospital and highlights the warmth of the RVAD pumping blood out and in as a comforting experience.
[00:35:45] - Delirium and Recovery,
The guest talks about his delirium and the chemical imbalances in his body, making him feel like he was on fire. He recalls when he thought an X-ray technician was trying to kidnap him and how his mother had to change his dressing from the hospital until the heart transplant.
[00:39:01] - Battery Life and Edema,
The guest discusses how he had to be physically cautious with the LVAD and could not go anywhere because of the drive line. He highlights the importance of constantly charging the batteries and mentions the compression stockings he had to wear due to Edema.
[00:41:21] - Dress Rehearsals and School,
The guest mentions how he had to cancel school for the next two years because of his surgeries and describes the challenges of being in and out of the hospital every month due to Edema and potential calls for transplant. He talks about how he missed a full-ride scholarship due to his health condition.
[00:43:15] - Donor Specific Antibodies,
The guest recalls how he got a call at 2 AM about a potential heart and how he and his father drove
[00:44:37] - Diuresis and Dry Weight,
Armin discusses diuresis and reaching his dry weight before a potential heart transplant. He shares how he lost 40 pounds within a week and the toll it took on his body. He also talks about how he was bumped to 1A on the transplant list after getting a Milrinone 24-hour IV pump.
[00:53:18] - Unexpected Shock,
Armin recalls the time he was shocked twice by his ICD and how he was airlifted to a hospital. He shares how he got bombarded with Valentine's Day cards from nurses and how it brought a sense of humanity to his situation.
[00:57:53] - Second Potential Heart,
Armin talks about getting a second potential heart in March and going through all the necessary blood tests before going for the operation. He shares his excitement and hope for the future.
[01:08:10] - Life after Heart Transplant,
Armin discusses his recovery after the heart transplant, including physical therapy and medication. He shares how grateful he is to the donor and their family for giving him a second chance at life. He also talks about his plans for the future, including going to college and pursuing his dreams.
[00:59:13] - Preparing for the Heart Transplant,
Armin talks about getting ready for his heart transplant surgery, walking into the operating room, and the medical team preparing him for the procedure. He also talks about his previous surgeries and how he knew some of the nurses from before.
[01:01:02] - The Long Surgery and Recovery,
Armin talks about the length of his heart transplant surgery and the need for the transplant to be done quickly due to the time-sensitive nature of the procedure. He also talks about his recovery and his challenges post-surgery, including high white blood cell counts and fevers.
[01:03:25] - Communicating After the Surgery,
Armin talks about his communication with doctors and nurses after his heart transplant surgery. He explains that he used paper and a notepad to communicate, and he had certain doctors and nurses he preferred to share with.
[01:06:22] - The Road to Discharge,
Armin talks about his journey to discharge from the hospital after his heart transplant surgery. He discusses the importance of being safe and waiting for all testing to be completed before leaving the hospital. He also talks about his joy when he finally got home and saw his family.
[01:11:07]- Gratitude and Support,
Armin reflects on his heart transplant surgery and expresses gratitude for his family, healthcare providers, and EMS professionals who supported him throughout his journey. He talks about how important it is to have a support system during
[01:13:19] - Importance of Support System,
Armin emphasizes the critical role that a support system plays during the transplant process, particularly in managing emotions and medications. Having family and friends to cook meals and provide emotional support helped him through the difficult times.
[01:18:30] - Staying Active After Transplant,
Armin talks about the importance of staying active after the transplant and how he maintains his physical fitness through weight training and exercise. He also mentions the importance of balancing exercise with other aspects of life, such as work and school.
[01:23:02]- COVID and the Transplant Games,
Armin shares how he was training for the Transplant Games America in San Diego before contracting COVID-19. He planned to participate in track and field and basketball but had to cancel due to his illness. He remains hopeful for future games.
[01:25:30]- Maintaining Mental Health,
Armin stresses the importance of seeking help for maintaining mental health after a transplant. He recommends taking things one step at a time and staying organized, including breaking down tasks into smaller, more manageable pieces.
[01:27:09] - In conclusion,
Armin emphasizes the importance of maintaining physical and mental health after a transplant and encourages others to seek support from family, friends, and medical professionals. He stresses the need to stay positive and take things one step at a time.
[01:27:49]- Why Share?
Armin shares that as a former patient and future doctor, he understands the importance of advocating for oneself and others. He speaks about volunteering for his local organ procurement center and sharing his story at medical conferences to help educate and motivate patients.
[01:29:06] - Taking Control,
Armin emphasizes the importance of being one's advocate as a patient and understanding one's medical treatment. He encourages patients to speak up, share their insights, and take control of their health.
[01:30:48]- Giving Back,
Armin discusses his volunteer work at his local organ procurement center and speaks to patients waiting for transplants. He shares his insights and experiences to help others going through the same journey and inspires listeners to cherish each moment in life.
[01:32:08]- Looking Ahead,
Bouba and Armin discuss Armin's plans to become a doctor and continue advocating for patients. They express excitement for what's to come, and Bouba emphasizes the importance of sharing one’s journey and experiences to inspire and motivate other patients and caregivers.
[01:33:09] - Words of Wisdom,
Armin shares his words of wisdom for patients and their caregivers, reminding them that they are not alone in their journey and encouraging them to cherish each moment, tell their loved ones they love them, and know their "why" in life.
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Bouba chats with Olivia Rose to talk about her heart disease journey.
After suffering two strokes and heart disease, Olivia Rose, an elite athlete, courageously fights for her life and embarks on an inspiring journey of self-discovery and resilience to defy the odds.
Olivia Rose is a thriving survivor, heart transplant recipient, and former LVAD patient living with heart disease. In addition, she is a natural bodybuilder and former athlete who has inspired others with her resilience and determination.
Olivia Rose was 25 when she was diagnosed with a heart condition in 2014. She had two strokes, an LVAD to help her heart, and was told she only had 15% of her heart functioning. Despite this, she remained positive and found strength in her family, friends, and athletic background. Through her determination and her mother's unwavering support, Olivia Rose eventually received a heart transplant and is now living with a new heart. She inspires many, overcoming immense challenges and finding joy in the little moments.
Catch the bonus content on our Youtube channel.
https://www.youtube.com/@heartofagiant
Other episodes you'll enjoy:
Episode 5 - Life with an LVAD while waiting for a heart transplant
Episode 9 -The Better Half of Heart of a Giant Speaks on LWHD
Episode 10 - Inspiring Journey From Heart Failure to Transplant: A Chat With John Sanson
Find out more about Olivia here:
Instagram: https://www.instagram.com/i.am.oliviarose/
Connect with me:
Instagram: livingwithheartdisease.podcast
Facebook: https://www.facebook.com/heartofagiant.foundationYouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
Did you enjoy this episode? A free way to support our show is by leaving it a rating and review on Apple Podcasts. It's a chance to tell us what you love about the show, and it helps others discover it as well.
Apple Podcast https://podcasts.apple.com/us/podcast/episode-10-inspiring-journey-from-heart-failure-to/id1567454596?i=1000608329515
Spotify https://open.spotify.com/show/4aJeFMvnXyazgGuhR8A4Xs?si=6d9f19949f514714&nd=1
Chapter Summaries:[00:00:01]
Today is a special day. I'm here today with Olivia Rose. There you go. Olivia Rose. That's how we know her publicly. It's a great honor to have you on this podcast, and she was definitely one of my inspirations, mainly because we connected a long time ago and had been following her journey from a distance.
[00:01:15]
Like, okay, so I was a bodybuilder, a natural bodybuilder, back when this happened. And I've always been an athlete that's been born. So I've been playing volleyball, t ball, basketball, tennis, soccer, track, everything, and flat football even. And so I was at a competition in Pittsburgh, and I started feeling nauseous backstage, and I suddenly started falling to the floor, and I was having a stroke at that time, and I didn't know.
[00:04:25]
That was the second stroke.
[00:04:26]
Yeah. So then they did a thrown back to me the procedure where they go in your brain and take out the clot. And my right side was affected at that time. So right now, my right hand still shakes. My right side, my right hand still shakes. So my legs were wobbly sometimes, and I had speech problems. But the speech right now is so great compared to before. I can't even tell you. It was so bad.
[00:09:10]
They have a heart for me. I said yes. So we got to run back home, either grocery store, run back home, get on my start and drive straight to the hospital.
[00:11:22]
Yeah, I was so shocked. I was like, what? Have a heart-to-heart me. It feels surreal. It does feel surreal. I was also so grateful the whole time.
[00:16:44]
I did the same. Was it what, five years? What did you see?
[00:25:38]
I'm independent. I like being independent, doing things by myself, doing things for myself, and not having anybody come and tell me what to do. So my mom and I bump into pets a lot. I like to do my own thing, and she wants to come and bring me back to reality.
[00:32:11]
Because you are very active, the LVAD allows you to get some of the activity. How important was it? What did it mean to you to be able to do hiking still, and were you social? Were you able to go hiking with other people?
[00:38:35]
I was. I was walking around with this bag, LVAD, and a bag in my backpack. I didn't feel pretty. I lost everything. I was walking around looking like a boy.
[00:48:52]
I was a personal trainer before I started doing bodybuilding competitions. So yeah, I was training before. -
"If it wasn't for Ivy, I probably wouldn't be where I am. So I thank God for her. It wasn't easy. " - George Boakye-Yiadom
Bouba talks with George about the ups and downs of living with a heart condition.
George Boakye-Yiadom is a mental health coach, fashion designer, and technology consultant. He is the founder the Boak Group LLC and works at of Fathers Uplift. He is married with three children and recently underwent a heart transplant.George Boakye-Yiadom was a professional basketball player playing in Russia when he experienced a sharp pain in his chest and was diagnosed with heart failure. He was quickly put on a Balloon Pump and then an LVAD. During this difficult time, his wife Ivy found him a therapist and mentor, Charles Daniels (Co-Founder of Fathers’ Uplift), who helped George rebuild his life. George developed an interest in fashion, starting a company called The Boak Group, and later became a technology consultant and a coach at Fathers Uplift. Despite his heart condition, George was able to travel to Ghana with his LVAD. With the support of his wife and family, George has been able to make a successful transition from professional basketball player to entrepreneur.
In this episode, you will learn the following:
1. George Boakye-Yiadom's incredible journey from playing professional basketball to living with a heart condition, LVAD device, and now a heart transplant.
2. His inspiring story of how his wife, Ivy and his mentor Charles helped him rebuild his life, including pursuing a career in fashion, technology consulting, and mental health coaching.
3. His experiences traveling with an LVAD, including to Ghana for his wedding, and his hope to play basketball again in the Winter League.
Find out more about George here:
Instagram: https://www.instagram.com/theboakgroup/
Connect with me:
Instagram: livingwithheartdisease.podcast
Facebook: https://www.facebook.com/heartofagiant.foundationYouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
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Chapter Summaries:[00:00:01]
Today we have another giant who also lives in Boston. We're looking forward to talk about his journey. We have a very similar journey, including the LVAD, and now he had a heart transplant. We'll go through a few of the ups and downs, but also some of the beautiful moments.
[00:00:30]
I work for a mental health outpatient clinic that primarily serves fathers and their families. He says he went from normal to needing something to support his heart in just a few months. George recently had a heart transplant.
[00:08:01]
The LVAD has 46 hours on each battery. He had to replace his batteries by year three, but did travel to Ghana with his LVAD. How was that showing up at the airport with this device?
[00:12:28]
How did you start picking up all these activities, now your a counselor, a coach, a fashion designer, technology consultant. Everything. We do, at the end of the day, is about people, right? And it's about those relationships.
[00:17:30]
As a former basketball player, George wants to introduce his sons to basketball. He wants to join the Winter League in November. Are you taking it easy? It is about eight months post-transplant.
[00:21:11]
The transplant happened last October, the end of October 2021. I woke up mid-surgery trying to pull my tube out. I'm still dealing with diabetes and working on it. My nutrition has been pretty good. I just got to find a healthy balance.
[00:26:29]
I went back to work in February, but I was working virtually. So when it comes to doing my fashion stuff, I haven't done any fashion shows. But I am selling my old stuff, and people are buying it.
[00:31:24]
"I went from 310 to 240 in months. Mostly water.
What is it like being a dad? He's amazing.[00:34:12]
I'm really amazed at the love that people show you on instagram. How are your friends responding to all the changes you've been through? Has anything changed besides being able to join them at all the parties and things like that? I'm excited to play basketball with them again.
[00:36:28]
"Always think positive, and positive things will come. The only difference between a millionaire and a broke person is how they think " "I want to meet your beautiful kids, and for you to meet mine "
-
John Sanson was diagnosed with dilated cardiomyopathy in 2016. After undergoing an LVAD and a transplant, he lives in Houston, Texas, with his wife, two dogs, and a cat. John works in the coffee industry, does photography, and is currently working on a documentary series about coffee. He is now facing $50,000 worth of medical debt due to the high cost of doctor visits but is thankful to have a job understanding his medical needs.
In this episode, you will learn the following:
1. John Sanson's story of being diagnosed with dilated cardiomyopathy and going through LVAD and a transplant in five or six years.
2. The financial burden of navigating the healthcare system and its medical debt.
3. John's creative projects include photography and a coffee documentary series.
Find out more about John here:
Instagram: thejohnsanny
Other episodes you'll enjoy:Episode 9 -
The Better Half of Heart of a Giant Speaks on LWHD
Episode 3 -
Patient Education and Research
Episode 7
- The 757 Renaissance Man on his journey with the LVAD
Connect with me:
Instagram: livingwithheartdisease.podcast
Facebook: https://www.facebook.com/heartofagiant.foundationYouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
Have you loved this episode? A free way to support our show is by leaving it a rating and review on Apple Podcasts. It’s a chance to tell us what you love about the show, and it helps others discover the show as well.
Chapter Summaries:
[00:00:01]
John Sanson was diagnosed with dilated cardiomyopathy back in 2016. Since then had LVAD, then a transplant. John went from no symptoms to fully symptomatic in three days. He was amazed at how quickly all of this happened.
[00:02:52]
Right now, I'm 240. I started my journey when I had my LVAD. I lost 140 and got down to 200. But prednisone and other transplant meds do work on your body. So I went back up to 240, which I'm still happy with.
[00:03:37]
"I don't know how to react to that. I don't know how to react to that. So when he started showing symptoms, he went to his cardiologist. Eventually, he was in end-stage heart failure.
[00:04:41]
I was still in denial. The idea of a transplant for me was a shock. Going in and out of the hospital was a struggle.
[00:08:58]
The biggest support has been my wife, and we've had family that has been able to help out. I did catch COVID once when I still had my LVAD. So that's been another navigation. In the early years, we were self-sustaining.
[00:11:18]
Navigating the insurance has been the biggest headache. I've seen all three primary transplant clinics here in Houston. One of them is the best.
[00:13:26]
I'm sitting on about $50,000 worth of medical debt that I can't pay just because I'm barely making ends meet. So I work in the coffee industry. I also currently work on a documentary for a video series about coffee. How do you sustain some of these expenses?
[00:15:39]
The five-ounce is a traditional size, like a flat white style cup. Photography started about 10 or 12 years ago, alongside some graphic design work. The current project I'm working on was a random throw in the air.
[00:17:21]
Right now, I am starting to manage my workplace's Instagram. It's more about engagement and helping businesses. How can the public or any of us support you, and what would you like?
[00:19:10]
I got my LVAD in September 2019, four months before the pandemic went crazy. I had my transplant in March of 2021. Some of the challenges dealt with include syncope and a pulmonary embolism. Those are probably the most challenging part and the worst for me.
[00:25:05]
(Talking about his Wife) She already enjoyed cardiac while she was a nursing school. When she saw the opening, she applied for it and went for it. It's funny how this life stops you on the path, and then you find a way around it, sometimes even better.
[00:26:09]
I was only on the list for 28 days. I had the LVAD in September 2019. I had a driveline infection that ended up spreading to my blood. Is back to working. Day-to-day is pretty standard. My whole thing is to fight back for normality.
[00:31:40]
"Our biggest thing is trying to travel again, " John says. "We've been able to take a few day trips here in Texas, but to go out of state and travel is going to be kind of a big thing."
[00:32:20]
I was diagnosed with heart failure five years ago. What do you want for the future?
[00:37:01]
I would say the transplant's recovery was much easier than the LVAD’s. After your two months of laying the sternum hill, I was pretty much regular life within two or three months afterward. When are you going to Florida? That would be eventually.
[00:40:01]
"I wish for me that you would have a system versus opt-in because, with as many people that could be having everyday life, the transplant, I think, just did not do that " 22 people a day die waiting. Only 60% of people put action behind donating their organs. So take that first step and register.
[00:43:20]
I have to close with a discussion about coffee. What is your favorite coffee at the moment? What are your last words in general? What do you say to your support system, starting with your wife? And what do you have to speak to the general public?
-
Anyone facing a heart journey knows how much a support system makes life easier. The core of our support system is often our spouses and life partners. Our talk today is about the better half of Heart of a Giant.
Welcome to Living with Heart Disease. Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share challenges and triumphs. Discover what it means to survive and thrive with heart conditions.
Today’s main guest is Desirée, Bouba’s life partner. Now years into the heart journey, Desirée can reflect on the thoughts, feelings, actions, and questions she had early on. She gives her take on major events that happened in Bouba’s heart condition journey. On top of that, Desirée gets a chance to explain how she processed those moments, and if there is anything she feels differently today.
Bouba says that he wouldn’t be here without Desirée’s love, care, and strength. As a caregiver, Desirée saw Bouba when he was out and about, when he was home, and when he was at the hospital. She talks about seeing Bouba’s energy and presence change depending on where he was. Together, Bouba and Desirée uncover their different perspectives from those parts of the journey.
Back then, the couple was younger, on the way to starting a family, and figuring life out. There are topics that they never officially talked about, which is natural when living life, but doing so now helps them understand each other better. Today’s conversation is proof that communication is necessary, even when we think we know what’s happening.
During this live discussion, we speak about a spouse’s perspective of living with heart disease. Desirée says the journey started off confusing, and shares what troubled her. As communication improved and she learned more, the journey became another part of the meaningful life she creates alongside Bouba. Desirée doesn’t forget to mention all the people who gave her encouragement and support so she could continue to be a source of strength for Bouba and her children.
The live audience is filled with people who witnessed the couple’s growth over the years. Everyone chimes in on the Heart of a Giant couple living such an outstanding journey. Listen as we talk about what major choices the couple made in their journey and Desirée’s story as the dependable spouse in a heart health journey. Enjoy this conversation that reminds us of the huge support that comes from spouses.
Timestamps:
[01:42] - Des and Bouba retell fond memories, such as how they met and their adventures together.
[07:31] - Des shares what went through her mind when learning about Bouba’s heart condition diagnosis.
[16:06] - How did life change after the diagnosis, and how did Des adapt?
[20:25] - Where did Des go to find support for herself?
[27:27] - Des talks about being in Dakar as the couple started to plan family life together.
[33:15] - When supporting someone, it can be difficult to understand personal choices or sensitivities that patients go through.
[39:51] - What was going on for Des and Bouba professionally during the earlier years of the heart journey?
[47:58] - This email prompted Des to make an emergency visit and travel to the other side of the world. What happened?
[01:01:22] - Des recalls the ups and downs of traveling to the hospital from across the world. Who helped her along the way?
[01:11:09] - The journey we’re on together requires resilience and finding meaning in our present life.
[01:15:10] - Let’s hear from our live audience!
[01:25:23] - This is what Heart of a Giant is about.
Links/ Resources:
Desirée Allen
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.Net
-
People feel inspired when you talk about the topics you care about with passion. More so, people feel moved to take action when they see your dedication. Advocacy can show the tangible changes that your efforts make, and start a ripple effect of positive action. Our talk today is about leading heart health advocacy.
Welcome to Living with Heart Disease. Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share challenges and triumphs. Discover what it means to survive and thrive with heart conditions.
Today’s main guest is Allyson Perron Drag. Allyson currently works as the Government Relations Director and Regional Lead for the American Heart/American Stroke Association for the last 15 years. Her role is to manage, plan, direct, and implement the advocacy programs to influence local, state, and national public issues related to the American Heart Association’s mission in Massachusetts, Maine, and New Hampshire.
Anytime Allyson sees a problem her first reaction is to question how to fix the problem. Her heart health advocacy extends to related concerns such as tobacco policy, postpartum care, and food security. At this time, Allyson has won several awards for her role as Government Relations Director, including Lobbyist of the Year, Beacon Hill’s Most Beautiful, Coach of the Year, and The Blake Cady Award for Leadership in Tobacco Control. All the progress inspires Allyson to continue her commitment towards solving systemic and behavioral issues within society.
During this live discussion, we speak about what it takes to pass a policy. Lobbying is a group effort. Allyson shares how policies are built and changed with help from people active in the issues. In advocacy, there is a balance between taking a break and working towards progress. Everyone participating in their own way, when they can, fuels the campaigns moving heart health support forward.
Allyson focuses on building heart health support during and after incidents, but she also encourages more investment into preventive healthcare. Listen as we talk about the journey behind the advocacy programs Allyson leads to influence local, state, and national public issues related to Heart Health. Enjoy this conversation that reminds us to use our voice for positive advocacy.
Timestamps:
[02:14] - Allyson Perron Drag is an advocate for heart and stroke patients.
[04:33] - Allyson talks about progress made on tobacco policy and reducing the consumption of sugary drinks.
[10:51] - Allyson describes troubles around stroke incidents in the commonwealth.
[15:46] - How did Allyson get into heart health advocacy?
[19:38] - Allyson talks about passing new policies and she answers questions from the live audience.
[27:42] - How does Allyson keep herself motivated to continue her work?
[37:24] - Are there new policies Allyson is working on? She talks about school food, postpartum care, and more.
[42:16] - The cost of living is causing unnecessary complications. What are Allyson’s thoughts?
[50:00] - Advocacy can show the tangible changes that your efforts make.
[52:38] - Let’s talk about the connection between cardiovascular health and mental health.
[57:16] - Figure out something positive to advocate for.
Links/ Resources:
Allyson Perron Drag
Twitter
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.Net
-
We are more than just heart failure. We have heart failure, but it is not a limit on who we are as people. We are multitalented and dimensional. Without a doubt, we should enjoy our lives. Our talk today is about living with humor and giving life your all.
Welcome to Living with Heart Disease. Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share challenges and triumphs. Discover what it means to survive and thrive with heart conditions.
Today’s main guest is Shawn Connors, an LVAD-enabled man, avid heart health educator, and enthusiastic advocate. Shawn is a self-proclaimed Renaissance Man. In his own words, he explains that “a Renaissance Man is a man who is skilled at all tasks he attempts and has wide-ranging knowledge in many fields.” He shares his thoughts and insights on his two podcasts: the LVAD Talk podcast and the Renaissance Man 757 podcast.
Born with a heart condition, Shawn had open heart surgery at 3 years old during a time when it was not a common procedure to do on children. Doctors told his parents he’d be lucky to see his teenage years. Decades later, Shawn is a family man living his life to the fullest. Shawn is a widow/single father, computer nerd, gamer, Christian, sneakerhead, and foodie.
During this live discussion, we speak about what it’s like to be in the journey alongside someone living with heart disease. Shawn’s family shares their thoughts and curiosities in this chance to speak transparently about the journey. We also have an engineer of heart technology who opens a moment for us to give feedback on what innovations could help us in the future.
Laughter is Shawn’s therapy, and he is spreading his zest for life with us all. Listen as we talk about fatherhood with heart disease, Black History, and an LVAD vs. a transplant. Enjoy this conversation that reminds us to make everyday a good day.
Timestamps:
[02:35] - Shawn Connors shares where the name “757 Renaissance Man” came from.
[06:44] - Shawn speaks about his parents’ role in his heart journey. How did they influence Shawn as he grew up managing heart disease?
[10:46] - How much did faith mean in Shawn’s journey? He talks about how God knows what you need before you need it.
[18:57] - Bouba and Shawn discuss how their heart disease journey influences their dedication as fathers. What mindset helps them stay grounded?
[24:57] - Shawn talks about prepping for the LVAD.
[30:39] - What are the differences between getting a LVAD or a transplant?
[37:15] - Shawn describes the mutual effort to support his wife through pancreatic cancer.
[42:17] - How can you make the most out of life after unexpected difficulties?
[49:46] - Bouba and Shawn talk about the Pittsburgh Steelers and the Dallas Cowboys.
[55:28] - Do you want to be a Renaissance Man?
[01:03:36] - Shawn gives his thoughts on success and happiness.
[01:09:41] - Shawn talks about Black history, the current times, and hope for the upcoming generations.
[01:16:50] - Who is in our live audience today? Listen to our audience discuss being a spouse of heart disease and technology for heart conditions.
[01:28:22] - Make everyday a good day.
Links/ Resources:
Shawn Connors
LVAD Talk podcast
Renaissance Man 757 podcast
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.Net
-
Sharing your story and building a community along the way is impactful. Your journey can be filled with excitement, empathy, resilience, and joy. Every time you make a new connection, you’ll realize that you never know who your story will resonate with. Our talk today is about finding the courage and passion to live with heart failure.
Welcome to Living with Heart Disease. Listen to the patients, support systems, and care providers who have resolved to become healthier. Join host Somaneh Bouba as we share challenges and triumphs. Discover what it means to survive and thrive with heart conditions.
Today’s main guest is Aiste Staraite who hails from the Northern European country of Lithuania. Aiste travels often having visited over 40 countries including living in Toronto, London, and Dubai. She claims that her passion for traveling opened her vision and shaped her understanding of different people and their cultures. It makes sense why she can be such a relatable storyteller.
Aiste believes her mission is to help others.
Still as active as she can be, Aiste remains positive and educational for others as she shares her journey of living with heart disease on social media. The LVAD was her first operation in her entire life, so it was a bit scary for her. She didn’t know what to expect. Since she remembers that feeling, she tries to be a representation for others.
During this live discussion, we share what our lives look like these days. We also hear from each other about why it’s important to listen to your body and we get tips on rebuilding our emotional health when life is heavy. You’ll also hear a special appearance of our previous episode’s guest Mel Field as a live audience member.
Aiste says, “I had to find the positivity and strength to come back to life and want something.” Listen as we talk about sharing our stories and building community. Enjoy this conversation that proves we are all examples of what it’s like to live with heart disease.
Timestamps:
[02:27] - Aiste Staraite describes her eclectic life of traveling, and what it was like to adjust her life for managing her heart disease.
[06:31] - Aiste thinks about how miraculous her journey is every time she thinks back to the moment she got her LVAD.
[13:30] - What happens when you address the symptoms, but not the problem?
[21:22] - Aiste explains how her dad helped her to have a more positive mindset during the earlier parts of her heart disease journey.
[27:02] - Aiste recalls when she was in the hospital at the same time as her father. How did it impact her health journey?
[36:52] - When did Aiste begin feeling better? She describes the need to remain active when you are living with heart disease.
[47:20] - After an unexpected health complication of a ruptured cyst, Aiste says her quality of life and emotional health went down.
[52:07] - Aiste says that the ability to listen to her body is what helped her the most in her recent journey. Listen to her describe her eating habits and the diets she experimented with.
[54:25] - Sharing your story and making community along the way is impactful. You never know who your story will resonate with.
[01:03:27] - How does Aiste keep the friendly relationships she develops while connecting with the heart disease community all over the world?
[01:09:25] - When you share your story, even medical professionals become more educated about what it means to live with heart disease.
[01:16:11] - There are no mistakes in life. Only perception.
[01:19:09] - What inspiring and interesting books are we reading lately?
[01:28:41] - Take care of your health, physical and emotional.
Links/ Resources:
Aiste Staraite (@aistestaraite)
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.Net
-
Heart disease can change our physical health, but how often do we address the impact heart disease has on our identity? Part of our heart health journey is about rebuilding. We change our view of our identity and the role we play in the lives of our loved ones. Our talk today features stories about managing the physical and mental challenges of heart disease.
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 Mel Field (who based in London, UK with her lovely family). She was diagnosed with a heart condition at 28 around the time she first discovered the news of her pregnancy. Mel’s doctors shared that she was experiencing dilated cardiomyopathy, but they were not sure if it was simply happening with the pregnancy. After a year, Mel still felt symptoms, and it was clear to her that she would need to manage her heart health going forward. Mel is here to share her story and lessons learned from her years of living with heart disease.
Mel is someone who brings fun and laughs to conversations, and today she is bringing her light to a vulnerable topic. She opens up about balancing the physical and emotional challenges of managing her heart health. Health changes can mean that a person must reimagine their identity. Mel remembers how she got through the earliest part of learning to work with her body to continue enjoying life. She also explores how her heart health might impact her family.
Mel’s support system shares what changes happened in their life after Mel’s diagnosis. She reveals her habit of wanting the best for the family, and not wanting to be a burden on her loved ones. Her family thinks she is far from being a burden, and they get the chance to share their thoughts with Mel directly. The discussion becomes a therapeutic session that’s all about how we can rely on each other.
Mel is persevering in her journey alongside her amazing support system. Listen as we talk about not being alone while we constantly evolve as people dealing with heart disease. Enjoy this conversation that is both lighthearted and vulnerable.
Timestamps:
[02:32] - Mel Field describes how she found out about her heart issue.
[05:26] - Mel recalls what went through her head while raising kids and managing heart disease at the same time.
[09:47] - When your health changes so drastically, it can cause you to rethink your identity. How do Mel and Bouba deal with relearning who they are?
[16:34] - How can life be adjusted to managing heart disease? How can your support system be included in these adjustments?
[26:42] - Mel talks about her experience reentering the real world after her diagnosis. She talks about what’s different in her daily routines, grocery trips, and interactions with friends.
[35:26] - Mel says she learned about the LVAD from the Instagram community mainly. She also speaks about realizing the need for individualized healthcare for heart disease.
[40:37] - Mel and Bouba discuss what they learned about their individual health experiences, and how they listen to their bodies.
[42:46] - Did Mel see any life improvement after getting the LVAD?
[47:33] - Mel shares her thoughts on persevering in her journey, and wanting the best for herself and her family.
[56:00] - Mel’s support system gives a response for how their lives changed after her heart disease.
[01:02:53] - Do physical challenges outweigh the mental challenges of a heart disease journey?
[01:11:03] - Listen to these stories of having an ICD (implantable cardioverter-defibrillator). What can someone expect?
[01:19:16] - Being vulnerable can give others the courage to also express their experiences.
[01:25:35] - Mel shares friendly photos and memories of living with heart disease.
Links/ Resources:
Mel Field Instagram (@MEL.FIELD.988)
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.Net
-
Some people light up an entire room with their presence. They are the ones who bring love and laughter wherever they go. One interaction with them is unforgettable. People who make the most of life inspire everyone else to do the same. Our talk today celebrates the contagiously energetic life of Evelyn Charrisse McRae.
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 guests are Jazmine McRae, and Tawana James (daughter and sister-in-law, respectively), who cared with a big loving heart for our dearly missed Evelyn Charrisse McRae. The two women transparently share their thoughts about being caretakers in the heart disease journey. Evelyn Charrisse McRae mostly went by the name “Charrisse”, so that’s the name used in today’s show as Jazmine and Tawana talk about where the caretaker role fits into their relationships with Charrisse.
Despite sharing tales of emergency hospital visits, Jazmine and Tawana never forget to mention how determined Charrisse was to make the most of life. Charrisse had a will to enjoy life. Everyone could feel that energy. Bouba felt the same way when meeting Charrisse for the first time. He appreciated her positive energy and independence. In this conversation, everyone shares the lessons they learned from witnessing Charrisse live a full life.
More family and friends share their thoughts as a live audience. Everyone reminisces about their memories with Charisse, whether hilarious or heartfelt. As everyone gathers, they encourage each other to embrace both joy and grief. Learn their approaches to managing self-care as caretakers, communicating with patients, and making crucial decisions about the caretaker in emergency moments.
It’s an honor to share Charisse’s story and the story of those who loved and helped her. Listen as we explore the perspective of the loving family and friends in a patient’s support system. Enjoy this friendly gathering to celebrate a life well lived.
Timestamps:
[01:51] - Bouba talks about the first day he met our dearly missed Evelyn Charrisse McRae.
[05:37] - Tawana James, Charrisse’s sister-in-law, explains how she ended up living with Charrisse as a caregiver. Tawana says Charrisse brought life to her home.
[11:03] - Jazmine McRae, Charrisse’s daughter, funnily recalls her mom’s will to enjoy an independent life.
[15:11] - How can caretakers manage their self-care?
[19:58] - Jazmine and Tawana talk about Charrisse being a dog-lover.
[25:26] - What was “family life” like with Charrisse?
[31:25] - Jazmine helped organize her family and friends to do a walk in honor of her mother.
[38:34] - Everyone reminisces about the medical professionals who build a personal connection with patients.
[43:32] - Jazmine and Tawana talk about how they kept in touch with Charrisse to check on her emotional and physical condition.
[50:25] - Charrisse’s family recalls the final moments they shared. What are their different experiences of the same event?
[01:00:31] - Everyone lifts their voice in song.
[01:03:00] - Jazmine and Tawana express their thoughts about making decisions as the caretaker. They also talk about how Charrisse still shows up in their life today.
[01:11:23] - Why is it important to allow children to see grief be expressed?
[01:13:30] - Charrisse’s close family, friends, and support system exchange their memories of the lively person they all loved.
[01:42:55] - Live your best life, and leave your legacy.
Links/ Resources:
Heart of a Giant
Heart of a Giant Foundation (HGF)
Heart of a Giant on Heart-Failure.NetJazmine McRae
Tawana James
-
Doesn’t it feel great to speak with someone who understands you? It’s common for people to connect with someone who has a similar lived experience. Through advocacy, people can connect; and educate each other. Most importantly, they can empathize with one another. Our talk today creates an open dialogue for patient education and research in the heart condition community.
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 Wendy Coe Borsari. Wendy manages Hypertrophic Cardiomyopathy (HCM) as she contributes to the education and research happening in the heart condition community. Her family history with the condition stretches as far back as seven generations. After her children were diagnosed, Wendy became even more active in advocacy for HCM and other genetic cardiomyopathies.
More and more, Wendy strives to make sure the patient voice is front and center of what cardiology professionals are doing. She helps humanize research studies while also empowering patients to learn more about their conditions and understand the results of the studies they participate in. Wendy works with the Sarcomeric Human Cardiomyopathy Registry (SHaRe), pharmaceutical companies, and community initiatives. She is motivated to get the heart condition community talking and taking action towards a brighter, more educated future.
Choosing a topic of conversation can be more important than deciding to have a conversation. What are topics the heart condition community must start talking about? Today’s live audience members bring their insights on topics specific to their journey. Together, everyone talks about how to ask for help, and how to be open to receiving help from a support system that doesn’t always know what you need. The conversation also touches on living with noticeable heart condition devices and more.
Wendy encourages people to connect with others to build a community that advocates for each other. Listen as she discusses SHaRe, the international push to contribute to research, and strong relationships with medical teams. Enjoy this community dialogue of patient education and research.
Timestamps:
[02:10] - Wendy Coe Borsari is very active in outreach and education initiatives throughout the heart condition space. How did she get started?
[04:46] - Wendy explains her family history of HCM, and how her mother inspired her interest in research.
[09:49] - What are the usual HCM symptoms that show up in daily life? How are people able to monitor the condition?
[15:39] - Wendy shares what happened when she decided to lessen the amount of medications she was using.
[22:04] - How can you develop a trusting relationship with your medical team as a patient?
[24:56] - Wendy discusses SHaRe, new advancements in heart condition treatments, and the international push to contribute to research.
[30:27] - Who is part of Wendy’s support system?
[35:09] - How does Wendy approach talking about heart conditions with kids? She retells personal experiences with her own children to explain her mindset.
[39:07] - Wendy helps connect HCM communities across the country. Listen to Wendy describe how she gets communities to engage with each other.
[47:43] - Is it possible to manage safe exercise with a heart condition? What is the impact of including exercise in a heart condition journey?
[54:34] - What motivates Wendy to continue advocating for herself and others? Advocacy is what helps the community move.
[58:09] - How is the collective narrative of the heart condition journey being captured?
[01:04:03] - What are urgent challenges Wendy believes the heart condition community should be addressing now?
[01:09:48] - Can people adjust to life with a noticeable heart condition device?
[01:18:53] - Support education and advocacy in the heart condition space. Let’s build a community that takes care of each other.
Links/ Resources:
Heart of a Giant
Heart of a Giant Foundation (HGF)Wendy Coe Borsari
https://heart-failure.net
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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 BlogSistas with Heart
Instagram | FacebookLetsTalkPPCM
LetsTalkPPCM -
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
