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.
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.foundation
YouTube: https://www.youtube.com/@heartofagiant
Twitter: https://twitter.com/LWHDpodcast
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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?