HGF

Welcome Message

On the behalf of our team and myself, welcome to our Website.

Heart of a Giant Foundation (HGF) was born from my personal journey and steadfast commitment to advocacy, resilience, and positive change. Throughout my journey to receiving a heart transplant, I gained a unique insight into the challenges and intricacies of our healthcare system. This life-altering experience ignited my passion to support others navigating similar paths, a journey I understand intimately.

Meet the Founder

Meet Somaneh 'Bouba'!

Business Professional, Entrepreneur, and Heart Health Advocate

Somaneh "Bouba" Diemé is an accomplished engineer, passionate entrepreneur, and dedicated community leader committed to empowering patients, caregivers, and the broader community in heart health. As a long-time heart patient turned community health innovator, Bouba leverages his unique experiences and skills to foster connection, learning, and growth among patients and healthcare professionals.

Personal Journey and Mission:

Bouba's journey began over a decade ago when he was diagnosed with a congenital heart condition, leading to a prolonged battle with chronic heart disease and, ultimately, a life-saving heart transplant. This personal experience ignited his commitment to raising awareness, providing support, and driving positive change for those affected by heart conditions, particularly in at-risk communities.

Heart of a Giant Foundation:

As the founder of the Heart of a Giant Foundation (HGF), Bouba has led the organization to achieve significant milestones in empowering individuals at high risk of heart conditions. The foundation's programs focus on education, support, and direct intervention, helping individuals achieve self-sufficiency and improved quality of life.

Global Impact and Leadership:

Bouba is renowned for his advocacy and leadership in healthcare innovation, focusing on preventing heart diseases and improving patient outcomes. His mission to enhance local and global health is fueled by his social connections, professional knowledge, and personal experience with heart failure. By volunteering within his community and bringing a unique perspective from living in diverse parts of the world, including areas with limited resources, Bouba continues to make significant strides in raising awareness and driving positive change.

Community and Beyond:

Based in Boston, MA, with his family, Bouba's impact extends beyond his local community to his home countries of Mali and Senegal. His dedication to fostering connections and improving healthcare initiatives has made him a sought-after speaker and collaborator.

Contact Information:

For speaking engagements, collaborations, or partnership opportunities, please feel free to reach out to Bouba. Together, we can make a difference in the lives of those affected by heart conditions. Contact details can be provided upon request.

Key Achievements and Focus Areas:

- Education: Providing comprehensive heart health education to at-risk communities.

- Support: Offering resources and support networks for patients and caregivers.

- Direct Intervention: Implementing programs that directly improve the quality of life for individuals with heart conditions.

- Advocacy: Raising awareness and driving changes to enhance heart health outcomes globally.

Bouba's unwavering commitment and innovative approach inspire and empower individuals and communities worldwide.

Bouba’s Blog

Welcome to My Blog!

Welcome to My Heart Health Journey Blog

Hello, I'm Somaneh "Bouba" Diemé, a passionate advocate for heart health and the founder of the Heart of a Giant Foundation. I'm thrilled to have you join me here as I share my personal journey with heart failure and life as a heart transplant recipient.

From 2012 to 2022, I survived congestive heart failure caused by a congenital heart defect, leading to open-heart surgery to implant an LVAD (Left Ventricular Assist Device) pump. After a six-year wait, I finally received a heart transplant in late 2022. This journey has not only shaped my life but also fueled my commitment to improving patient outcomes and empowering individuals to lead healthier lives.

Through this blog, I aim to:

-Share my unfiltered experiences as a heart failure survivor and heart transplant recipient.

-Provide insights into the patient's perspective, making it more relevant to the improvement of therapies and healthcare systems.

-Empower and educate others about heart health, advocacy, and the power of community support.

-Inspire hope and resilience in those facing similar challenges.

Join the Journey.I invite you to be part of this journey, engaging with my stories, learning from my experiences, and contributing to the conversation. Together, we can drive positive change in heart health outcomes and improve the lives of patients worldwide.

Thank you for your support and for being part of this community!

New to the blog? Start by exploring some of my key posts and don't forget to subscribe to stay updated on new content.

Disclaimer: The information shared on this blog is based on my personal experiences and is not intended to replace professional medical advice. Always consult with a healthcare provider for any medical issues.

Latest Blogs

BATTLE OF HEART DISEASE: OVERCOMING OBSTACLES WITH ARMIN MUZAFIROVIC

healthy lifestyle| health + medicine

May 24, 2023•8 min read

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:

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.

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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.

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