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.

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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

EPISODE 10: INSPIRING JOURNEY FROM HEART FAILURE TO TRANSPLANT: A CHAT WITH JOHN SANSON

EPISODE 10: INSPIRING JOURNEY FROM HEART FAILURE TO TRANSPLANT: A CHAT WITH JOHN SANSON

July 06, 20235 min read

“It’s amazing how you get used to living one way, and now you’re switching to living a new way.” -John Sanson.

Episode 10: Inspiring Journey From Heart Failure to Transplant: A Chat With John Sanson

Bouba sits down with John to talk about living with heart failure, LVAD, and a heart transplant.
John Sanson is a Houston-based patient diagnosed with dilated cardiomyopathy (DCM) in 2016 and has since undergone LVAD and transplant procedures. He is an inspiration to many, having shed over 100 pounds, and is currently working in the coffee industry and producing a documentary series.

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.

 

Custom HTML/CSS/JAVASCRIPT

Find out more about John here:
Instagram:
thejohnsanny

 

Connect with me:
Instagram:
livingwithheartdisease.podcast

Facebook: https://www.facebook.com/heartofagiant.foundation

YouTube: https://www.youtube.com/@heartofagiant

Twitter: https://twitter.com/LWHDpodcast


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


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?

inspiring journeyheart failureheart transplantresiliencehealth journeyoldhgfpostspodcastIvad
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News & Media

Sign-up to stay updated with the latest news, interviews, and media appearances of Somaneh “Bouba” Diemé.

Discover how Bouba makes waves in healthcare advocacy, patient support, and heart health education. Follow his journey as he shares insights, success stories, and ongoing efforts to drive positive change in healthcare systems worldwide.

Latest News

EPISODE 10: INSPIRING JOURNEY FROM HEART FAILURE TO TRANSPLANT: A CHAT WITH JOHN SANSON

EPISODE 10: INSPIRING JOURNEY FROM HEART FAILURE TO TRANSPLANT: A CHAT WITH JOHN SANSON

July 06, 20235 min read

“It’s amazing how you get used to living one way, and now you’re switching to living a new way.” -John Sanson.

Episode 10: Inspiring Journey From Heart Failure to Transplant: A Chat With John Sanson

Bouba sits down with John to talk about living with heart failure, LVAD, and a heart transplant.
John Sanson is a Houston-based patient diagnosed with dilated cardiomyopathy (DCM) in 2016 and has since undergone LVAD and transplant procedures. He is an inspiration to many, having shed over 100 pounds, and is currently working in the coffee industry and producing a documentary series.

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.

 

Custom HTML/CSS/JAVASCRIPT

Find out more about John here:
Instagram:
thejohnsanny

 

Connect with me:
Instagram:
livingwithheartdisease.podcast

Facebook: https://www.facebook.com/heartofagiant.foundation

YouTube: https://www.youtube.com/@heartofagiant

Twitter: https://twitter.com/LWHDpodcast


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


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?

inspiring journeyheart failureheart transplantresiliencehealth journeyoldhgfpostspodcastIvad
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The Heart of a Giant Foundation, Inc. is a 501(c)(3) nonprofit organization, EIN 84-2900386. Donations are tax-deductible.

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