The Gift of Life, Twice: Charles Cook on Why Organ Donation Matters

Episode Summary

In this deeply moving episode of Amplify: Elevating Patient Voices, we sit down with Charles Cook—a two-time deceased donor transplant recipient who received a life-saving heart transplant in 2016 and a kidney transplant in 2017. 

Charles shares his extraordinary journey—from being diagnosed with a genetic heart condition at 17, to surviving a massive stroke, to enduring years of recovery and ultimately facing end-stage heart failure. His story is one of resilience, faith, and an unshakable commitment to “keep banging”—his personal mantra for overcoming life’s toughest obstacles. 

In recognition of National Organ & Tissue Donation Awareness Week, this conversation highlights the life-saving impact of organ donation, the importance of representation in healthcare, and why Charles has dedicated his life to giving back through advocacy and patient support.

Why You Should Listen

•  Hear a powerful, real-life story of survival against overwhelming odds 
•  Understand the true impact of organ donation—from a recipient’s perspective 
•  Learn how resilience and mindset can shape outcomes in the face of adversity 
•  Discover the importance of advocacy and representation in healthcare systems 
•  Be inspired to take action and help amplify patient voices 

Episode Highlights

• 00:00 – Introduction to Charles Cook and his powerful story 
• 03:30 – A life-changing diagnosis at 17—and losing a dream overnight 
• 12:30 – A sudden stroke and a near-death experience on the highway 
• 21:00 – Facing heart failure and the reality of limited time 
• 23:30 – The life-saving role of an LVAD as a bridge to transplant 
• 27:00 – “Keep Banging”: the mindset that carried Charles through 
• 31:00 – Advocacy, representation, and addressing disparities in care 
• 38:00 – Life after transplant and finding purpose in giving back 

About the Guest

Charles Cook is a two-time organ transplant recipient, receiving a heart transplant in 2016 and a kidney transplant in 2017 at Toronto General Hospital. 

He is an active volunteer and advocate, working with organizations such as the Kidney Foundation of Canada, the Transplant Ambassador Program, and the African Caribbean and Black Organ Health initiative. 

Driven by gratitude for the “two gifts of life” he received, Charles is committed to paying it forward by supporting patients, raising awareness, and advocating for more equitable access to transplant care.

Medical Disclaimer:

The content shared on Amplify is for informational and educational purposes only.

Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.

Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Transcript

SPEAKER_02 0:01

Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations. I'm Ursula Mann.

SPEAKER_01 0:12

And I'm Brent Courtney. Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.

SPEAKER_02 0:21

From personal journeys to policy shifts, these are the voices shaping a healthcare system that listen.

SPEAKER_05 0:32

Hi, I'm Ursula Mann, and I'm here today with my colleague Christine P. Sopia for our episode of Amplify. Christine, I'm really excited. Today we're going to be chatting with someone who has a very interesting story as a two-time deceased donor transplant recipient. What are your thoughts on today's show?

SPEAKER_03 0:52

I'm really excited about the today's show because I've met Charles on a couple of instances, like in 3D. I've met it a number of times on Zoom or otherwise. And he's, I don't know, he's got that voice of reason. I don't know. I I can't, maybe it's the voice is amazing, but it's also just when Charles talks, you listen. That's the best way I can put it. Some people have that aura, and he's one of these individuals. And he's got a great story to tell, and he's got a lot to say. So I'm always interested in hearing more from Charles and listening to his story and his thoughts.

SPEAKER_05 1:28

So where was the first time that you met him? It sounds like you really got drawn in and you were interested and wanted to learn more. When was the first time you connected?

SPEAKER_03 1:37

I had heard about Charles before I actually met him, but I met him at an advocacy day for the Kidney Patient and Donor Alliance Canada at Queen's Park a couple of years ago. Like I said, we had a very brief conversation there because it was a very busy day and there were lots of people there. But like I said, he is somebody that is very interesting to listen to. I hope that we will have the opportunity to see each other again at Queen's Park, possibly this year, again advocating for transplant first.

SPEAKER_05 2:06

And so, in terms of all these interactions, what is one word that comes to mind when you think of Charles? The voice of reason. I don't know. It's more than one word. I'm sorry, but yeah. That's okay. It's a good list. The voice of reason. Okay, let's dive in a little bit further. So I was really interested to learn that Charles was not originally Canadian but moved here summer of 2006, popping over from the US. And as mentioned, he is a two-time deceased donor transplant recipient. He received a heart in 2016 and a kidney in 2017 at Toronto General Hospital. He received two gifts of life, he says, and now strives to do whatever he can to pay these gifts forward because he realizes, he says, he can never pay them back. And so I'm interested to hear more about his journey, the lessons he's learned, and what's happening. Charles volunteers with several organizations, a few of which are the Kidney Foundation of Canada, the Transplant Ambassador Program, and the African Caribbean and Black Organ Health YouTube channel. Charles, welcome to today's show. Thank you.

SPEAKER_00 3:15

I'm glad to be here. Thank you guys for having me.

SPEAKER_03 3:17

It's wonderful to have you over. And so let's start Charles with your health journey, because that's where it all began, really. All this work that you're doing in this particular ecosystem that started with that health journey. So tell us a little bit more about that.

SPEAKER_00 3:31

All right. It's pretty wild and crazy, but let's go ahead and get into it. I was born with a heart condition called HCM, which stands hypertrophic cardiomyopathy. My mom had it, her mom had it. I was born with, but I didn't get diagnosed until I was 17 years old. Unfortunately, when I was 17 years old, I was a midshipman at the United States Naval Academy, and that kind of blew my whole plan at 17. I had the next nine years of my life planned out. And they said, Nope, you can't go any further with this health condition. You have something that could kill you. Good luck. Have a nice life. And that was it.

SPEAKER_05 4:05

Wow. Charles, then getting chills. That's not news you want to hear.

SPEAKER_00 4:10

No, especially when you're 17 and you have the whole rest of your life planned out and you're going to do great things, and you're told that you can't. So I went into the academy at 17. I turned 18 on Boxing Day when I was home for Christmas leave. And then a few weeks into the second semester, they said, You're no longer a midshipment. I had to figure out what I wanted to do with my life. So any 18-year-old that had a whole lot of life experience, I just went into denial. There was no follow-up or anything. So I just bumped along, tried to figure out a few things, and eventually landed in hospitality management, which was a restaurant business. And I did that for 17 years. Went from the dish pit, started off as a dishwasher at 19 until I was hiring managers for a restaurant company back home in Atlanta. And I was driving home from some interviews one day and had a massive stroke behind the wheel of the car on the highway in five o'clock traffic.

SPEAKER_03 5:03

Oh my goodness.

SPEAKER_00 5:04

I didn't hit anyone. No one hit me. Lived to tell about it. At that point, I was married to a young woman from Ontario. And we said that we know that this stroke is just the beginning of the bad stuff that can happen because of the HCM.

SPEAKER_05 5:20

And were you having symptoms at this point in time? Were you managing anything?

SPEAKER_00 5:24

None whatsoever. It was maybe they got it wrong at the academy because I've had no issues whatsoever.

SPEAKER_05 5:29

How did you end up getting diagnosed? Because you had no symptoms.

SPEAKER_00 5:32

So we got to go way back to when I was 17. So at the academy, I went in July of 1986. So dating myself. So for a quick math for anyone listening, I just turned 57 on Boxing Day. I'm very happy about that.

SPEAKER_05 5:46

Happy birthday. Happy birthday.

SPEAKER_00 5:48

Thank you very much. We'll get to that later on in the story about why that's so important. But you go in the summer and it's like boot camp. But what I say is really it was a mental and physical beatdown where they're weeding out the weak, then they start weeding out the strong. And there's a whole bunch of physical stuff that you do. I excelled in that because back in high school, I played football, I wrestled, I ran track. So the physical stuff was no issue. Once the summer ends, the upperclassmen come back because they've been out doing their stuff during the summer, and they say it's called the return of the brigade. So the first order of business for the returning upperclassmen is to start figuring out who's who and what's what out of the class of incoming freshmen, which is what I was a part of. So they said we're gonna have a motivational platoon run on Saturday morning. And sure enough, Saturday morning rolled around. They drug us outside. We went for a run. And at the beginning, it was like every other run I've been on since I've been to the academy. I was up front with the leaders helping to set the pace. And all of a sudden, I started getting these chest pains. Shortly after that, I experienced one of the strangest sensations I've ever had in my life. It felt like all the blood my body had drained in my legs, which had somehow been turned into lead, and I could barely move them. So while I'm running, everybody else is catching up to me and passing me, and one of my upperclassmen gap alongside me, said, What's wrong with you? And I said, I'll find out, sir, because nothing like this has ever happened to me before. So they said, knock it off, go back to the hall, which is the building where we lived, and call it a day. So then I'm thinking, this is right about the time that the weather's starting to turn. So I think maybe I have a bronchial infection or something. And so I figured I'd go running the following week in warmer temperatures and stuff. So after class, a couple times I went that next week and ran after school and same symptoms showed up. So then I went back to the upperclassmen and let them know what was going on. I said, go to the clinic, get yourself checked out. So it went in order. I went to the clinic, they did tests, said we need to do some further testing, sent me to the hospital on base, same thing. And then they sent me to Bethesda Naval Hospital, which is one of the top hospitals in the country. At one point, it was where they would send the president, he became ill. And that was where I was diagnosed. The doctor that saw me was actually the chief cardiac surgeon of the Navy, and he said, We see midshipmen here at the hospital all the time due to the proximity to the academy, but it's very rare for me to ever have to tell one of them that their career's a midshipment might be over. That happened 40 years ago this summer, and I still can't remember another word that he said because it was just too much. I'd given everything to get to this point, and now it's just gonna get wiped out like it never happened. So that was really tough. And eventually, after I finished out that semester, went home for Christmas leave, came back for a couple weeks, and then my company officer called me aside and said, Hey, decisions come down that you're gonna get your medical separation as of right now, then you're done. You're no longer a midshipman, and I had to go back home and figure everything out.

SPEAKER_03 8:56

So it's a double whammy because not only are you getting that news about your health condition, but like you said, your dream is just wiped out instantly.

SPEAKER_00 9:04

Exactly. Yep.

SPEAKER_05 9:06

And at that age, you're thinking about your dream.

SPEAKER_00 9:08

Absolutely.

SPEAKER_05 9:09

You're supposed to feel pretty invincible at 17.

SPEAKER_00 9:12

I say tempe tall and bulletproof. You nailed it, Ursula. Exactly.

SPEAKER_05 9:16

So you're focused on what you wanted to do. You went back home and then you ended up in pivoting and ending up in the hospitality sector.

SPEAKER_00 9:26

Yes. That's quite a pivot. But one thing I have to say that will also come up a little bit later is when I got home, I'm 18. Oh my god, my life's over. Nothing good is ever gonna happen to me again. How can I go on? My dad let me mope around for two days, 48 hours. That third day he came home from work. He said, You got a job yet? Oh gosh. I said, But bad, my whole world just got turned upside down. I'm doing my best just to try to hang on here. He said, Look, you're 18 years old. You got the rest of your life to live. This is a tough blow, but sitting around here feeling sorry for yourself ain't gonna do you any good. What you need to do is figure out what you want to do with your life, get up off your butt and go do it. Now, when he told me that, I wasn't trying to hear that. I'm like, that's harsh. But looking back now through all the stuff that I've been through since then, that was the key moment that my dad taught me you have a choice in every situation. I could have thrown my hands up, cried, oh, woe is me, and allowed myself to become a victim of my circumstances, or I could choose to stand up and fight and try to improve my situation. That's what I did then, and that's what I've been doing ever since. And that leads us up to why I'm still here today.

SPEAKER_03 10:36

See, this is why I told you he's the voice of reason.

SPEAKER_00 10:40

I've never been called that before.

SPEAKER_05 10:43

I can understand the getting drawn in. I'm leaning forward already. There you go.

SPEAKER_00 10:49

Thanks for listening. I love telling the story because it reminds me of how blessed I am.

SPEAKER_05 10:54

You're on the 401 and you're driving.

SPEAKER_00 10:58

No, this is back down in Georgia still.

SPEAKER_05 11:00

Okay.

SPEAKER_00 11:01

So after school, I graduated and then went to work for a restaurant company back home in Atlanta. And at the very end, I started off as a restaurant manager. It was the year that the Olympics came to Atlanta back in 1996. And then I got the chance to leave operations to go into HR and began hiring managers for the company as a recruiter back in 2001. Then we were promoted or reclassified as employment managers. And I did that for the rest of the time that I was with the company. I was with the company for a total of 10 years. So two years in operations, eight years in HR. Regional Employment Manager was my title. And I hired managers to help run the restaurants. People would interview, and then we'd find a spot for them, which was the difference between a recruiter and an employment manager was a recruiter. Hey, come and work for us. We're great. Employment manager is come work for us. We're great, but we're going to train you. We have a strategy for where you're going to go, what team you're going to fit in, and that. And I'd finished up my interviews in a particular restaurant because one of the managers wanted to transfer to another place, so we need to find a replacement. So I did my interviews. The general manager of that restaurant walked me out to my car. I said, I think we got a good batch here. We'll probably be able to find that replacement. And then I was going to be in another place the next day. So I had called and let the person I was going to be working with that day say, Hey, I'll see you in the morning. Put the phone down and then I'm driving. I get on the highway, and then I don't get very far. And I say, I don't feel weird. And the way I describe it is if you were sitting in a bathtub and you're filling it up with warm water, you feel the warmth come up over your feet, over your ankles, over your shins, over your thighs. By the time that warm, fuzzy feeling crept up to my chest, I was just thinking, please God, don't let me pass out because I'm driving down the highway. And right about that time, out of nowhere, completely without warning, wham! Massive right brain, ischemic stroke hit, completely wipes out the entire left side of my body. I lose consciousness. The car goes off the road, hits a culvert, which lost it to the air, like on the Dukes of Hazard, which again, I'm aging myself. Car comes down, I come to I realize I'm no longer on the roadway, and I try to steer to get back on the road. And as my grandma would say, my stroke addle brain, I wound up oversteering and went across two lanes of five o'clock traffic, and then the car stopped on the right-hand shoulder. This is highway 316. That year was determined to be the third deadliest highway in Georgia. I didn't hit anyone, no one hit me, but somebody back in traffic had seen all this craziness and stopped to check on me, called 911, and then waited with me until the paramedics got there. Paramedics arrived on scene, they pulled me out of the car. They thought I'd had like a diabetic coma or something. So they took me to the nearest emergency room. And then in the emergency room, they determined that I had a stroke. And throughout my entire journey, the only time that I've been scared, because there's a lot of stuff where I should have been scared, but I don't know. I just haven't been. I have faith that God's going to get me through. But I remember I was laying on the exam table and the nurse said, You don't feel that, do you? And I looked over at her and she's wailing on my left arm. I said, Feel what? And it's just weird. You know how they say your life flashes before you? What went into my mind instantly was not about me. It was about my family. I have two young kids and a wife, and I'm like, Am I gonna be half a man now? I'm not gonna be able to provide for my family. Am I gonna become a burden? All that, just like that. And they said, Have you ever been on a helicopter ride? And I said, No. They said, Well, we're going on one tonight. So they took me up to the roof, they strapped me in a helicopter, flew me back across town to the other side of the city where I've been working. And then that was where little miracle number two happened because that was the exact location of the North Georgia Stroke Center. That was what they specialized in. So they're able to get the medicine in my body within the three-hour window, because once you have a stroke, you only have three hours before there's permanent irreversible damage.

SPEAKER_03 15:09

Wow, I didn't know that.

SPEAKER_00 15:10

So they got that into me, but it was just wait and see because the left half of me was gone. There was no movement, no sensation on the entire left side of my body. I was completely blind in my left eye, and left side of my face was slowly trying to slide off my skull. That's the condition that my wife and kids found me in that night when they made it to the hospital. See, part of my job was I had 40 different restaurants that I was responsible for, and I was in a different one each day. So I was on the highway every day, and that they didn't even know where I was. And that was the thing that I was always concerned about. I told them I love you before I left the house every day because I knew just probability-wise that with the craziness that goes on the highway, driving that much in all these different places, there was one day, most likely, I was not gonna be able to come back home to them, which is what my goal was every day. And that happened to be the night. And the doctor called my wife aside and said, Things don't look good. Start preparing yourself for the eventuality that if he comes home, he being me at all, then he's gonna be coming home in a wheelchair.

SPEAKER_03 16:13

How old were you at the time?

SPEAKER_00 16:15

36.

SPEAKER_03 16:16

Oh my goodness.

SPEAKER_00 16:17

Yep. Wow, yeah, just getting going good.

SPEAKER_03 16:20

And uh so that's pretty scary.

SPEAKER_00 16:22

Oh, it was very scary, very scary.

SPEAKER_03 16:24

But yet, in all that scariness, you had, like you said, you definitely had a guardian angel looking after you.

SPEAKER_00 16:30

Absolutely.

SPEAKER_03 16:31

Because you could have died on that highway.

SPEAKER_00 16:33

Absolutely. Uh this is a crazy thing. I hardly ever tell this part of the story. So, well, first of all, 12 days later, I got up and walked out of the hospital under my own steam. So they were wrong about that because my mom and dad had visited me. Another crazy thing, this happened on my mom's birthday. Oh wow. March 9th is a very important day for me. That was her birthday, and she thought that I had forgotten to call her on her birthday. I was like, no, mama, I was a little bit busy trying to stay alive. I didn't forget. But she said, because she'd heard the kind of prog notes and stuff set, she put her hand on my chest and she said, Chucky, they don't know everything. And she was right because they thought I was not gonna be able to walk, and I walked out of the hospital.

SPEAKER_03 17:17

So was this another one of your dad talks that said okay, snap out of it now?

SPEAKER_00 17:22

No, that was it's more my mom.

SPEAKER_03 17:24

So both of them had that intervention on you. Okay.

SPEAKER_00 17:27

Oh, that's what I was gonna say. You said the guardian angel. So my mom told me that I got out of the hospital 12 days later. And at that point, I was oh my god, how do people stay in hospital for 12 days? That's crazy. And I was able to, from the state troopers' report, find out the person who had talked to me or whatever waited with me when the paramedics got there. And they had a contact number on it, and I called them up and just said, Hey, you might not remember me, but I'm the guy that you stopped that had the wreck. And because this was around Easter time, and I said, I'm an Easter miracle, I'm still here. Thank you so much. You know, what you did helped save my life. And uh, the guy's name was John Love. I was like, Oh, it was just really cool.

SPEAKER_03 18:06

So you walked out of there 12 days later. Yep, and what happened next? Because we know you're taking us to the point where you're getting a new heart. So what happened?

SPEAKER_00 18:16

So then I began 14 months of the longest and hardest rehab and recovery I've ever had to endure. It was rough, but everything's a foundation. 17, 18, you learn that things don't always work out the way that you plan, sometimes through no fault of your own. So this is a thing that didn't work out like I planned with the stroke. I've never had to go through anything really physical, but that rehab and recovery. I had every specialist you can think of. I had a physical therapist, an occupational therapist, an ocular therapist because my the muscles in my eye had lost control. Speech therapist, a lady came and she shot sonic waves into my face to try to get the nerves and muscles to work again. And then a, of course, a neurologist, and then a cognitive therapist who is another person that was put into my path that has helped me immensely. And the first thing he says, it's gonna sound corny, but the old Charles is gone. You need to learn to love yourself for who you are, and that has been in the back of my mind through many things since then. And so then 14 months are done. I try to go back to work. There's too much residual damage in my brain for me to do the job that I had because the neurologist said you're never gonna work full-time again. So at that point, my wife and I had talked and said, like I said, we knew the stroke was the beginning of the very, very bad stuff that was gonna happen as far as the outcomes from the HCM. So we said, if something happens to me, then we want her and the kids to be around a large support system available. So that meant moving to her family because back in Georgia, just my mom and dad, they were getting older, they weren't in the best of health themselves. So that's how we wound up in Canada. When the kids got out of school in the summer of 2006, we made that big move. We were supposed to go in 2005, that was the plan, but everything got pushed back a year later because of the stroke. So then I get up here, find a cardiologist. Fortunately, you know, almost immediately, and I told him about the HCM. He said, There's two things I can tell you. There's no cure for it, it never gets any better. I'm like, great.

SPEAKER_03 20:24

Oh wow. A cheerful person.

SPEAKER_00 20:27

Yeah, exactly. Tell it to me straight so I know what we're dealing with. And then he said, When you turn 40, I'm gonna start sending you down to Toronto General because they do the heavy lifting on end stage heart failure, and we know how this is gonna end up. And he said, I'd rather them have a rapport with you, a relationship, they know your medical history, than you turning up on your deathbed and who's this guy saved my life.

SPEAKER_03 20:50

That was probably a good idea.

SPEAKER_00 20:52

Absolutely was. So I was being seen, kind of I would get a checkup here in Kitchener at a six-month, and then the next six months I would go down to Toronto General, and that went on. And then in January 2015, so 11 years ago, almost to the date, a couple weeks from now, I went down for a regular checkup and I didn't get to go home for a hundred days.

SPEAKER_03 21:13

Wow. And you're the guy who didn't like to be in a hospital.

SPEAKER_00 21:17

Exactly. I was like, hey, 12, this is crazy. How do people do this? And what happened was I went in for the checkup, and my doctor asked me some questions about how I'm like, I don't feel really good. I'm tired, I can't walk anywhere, I'm out of breath all the time. And then she said, You're scaring me. So they sent me to do a second test that was kind of like a stress test. And it's like, your heart's worn out when they got the results from the person who did the stress test gave me the results. I took them back to Dr. Ross, hand delivered them. And she said, Yeah, this is what I thought we're gonna admit you. And the funny thing was, I thought she was saying, I'm like, Yeah, I know eventually you're gonna admit me, but I thought I would go home and say, Hey, I gotta go into the hospital, be Whatever, get things straight and then go back. She said, No, come with me now. And so I was admitted to the hospital. And then I found out, of course, way later that the reason that they didn't let me go was because the results of the test showed that I was basically the over-under on my life expectancy with my heart was 30 days. If they let me go, they didn't know if I'd live long enough to come back for a follow-up appointment. Wow. So they didn't happen to have a heart in a fridge somewhere with my name on it saying, hey, Charles, we were waiting. Here you go.

SPEAKER_03 22:32

Right. I was going to say that. So essentially you were hospitalized for those hundred days waiting for a heart because that was your only option.

SPEAKER_00 22:38

Nope. I wouldn't have remembered 30 days was what they thought that I would live.

SPEAKER_03 22:42

Yeah, no, exactly. But you said you were in for a hundred days. So were you there the 100 days waiting for that heart transplant?

SPEAKER_00 22:48

No. Oh immediately what they said was, you're not going to make it. My heart's done. So they got to do something to keep me alive long enough to be able to be put on the list. Because when they did that second test, it showed that my heart was worn out to the point that I needed a transplant, but it also showed that there was so much pressure built up inside my chest from my body making do with the heart in as bad a shape as it was. That the surgeons had learned, transplant surgeons, over time, that if they'd taken a perfectly good heart, put it into a cardiovascular system that had as much pressure as mine did, that heart would literally explode. I would die, they lose the patient, they lose the heart. That's not good. So they need to come up with a better plan. So the team got together and they decided that the better plan would be to give my heart a helper called an LVAD, left ventricular assist device. That's what that stands for. It was a mechanical pump that they attached to my heart. They cut my chest open, stuck it on my heart. And then that pump was going to do two things. First and foremost is keep me alive because the ACM had caused my left ventricle to get so thick that it couldn't contract properly anymore, which is what put me into heart failure. And then that pump would be able to do that work that my heart couldn't do on its own anymore. So that would keep me alive. And then the doctor said that, or figured that once that proper blood flow had been restored, then the pressure to my chest would come down on its own. And then once that pressure was down, it'd be safe for me to receive a transplant. They put me on the waiting list and then away we go.

SPEAKER_03 24:22

So essentially they offered you a bridge until you could get that heart.

SPEAKER_00 24:26

And that's what they call it. A bridge. An LVAD is a bridge to transplant.

SPEAKER_03 24:30

Exactly. Got it.

SPEAKER_00 24:31

Understood. Good deal. Yes.

SPEAKER_05 24:33

So you received a heart, and then a year later, you received a kidney transplant. Do you remember what was going through your mind on the days that you found out? Okay, we have an organ for you.

SPEAKER_00 24:46

Let's back up a little bit. So we know that the heart condition is why I needed a heart transplant, why I got the LBAD. Now, the thing was, I told you about the plan. Go in, get the LBAD, it'll keep you alive. Pressures come down. That well, things didn't go according to plan when I went into surgery. Everything that could have gone wrong did go wrong, include me dying twice on the table. They brought me back. I lost a lot of blood during that surgery, which caused my kidneys to run dry for too long. They wound up dying. They finally got the LBAT in and then they got me into recovery. But because of that blood loss, they were giving me transfusions. All that blood in, bled out. I caught an infection. That infection led to another. That kept me down to C V I C U for almost seven weeks. Nobody thought I was going to get out or live, but I did. So that was what added up to the 100 days. I finally got out after 100 days, was home for three weeks. Then I had to go back and do it all over again because the first LVAD was about to gum up with broken down red blood cells, and then I'm gone. So I did a second LVAD. The first was in January, so this is in May. When I did the second one, it worked great. But when I woke up after that first LVAD, first of all, nobody thought I was going to wake up, but I did. And I'm like, what's going on? Because I had the LVAD, which runs on batteries or electricity. I had an electrical cord hanging out of my belly that I look down and I see it. It goes to this unit called the wall unit that charges the batteries, and then that plugs into the wall like a lamp. That's weird, but that's what they prepared me for. This is how LBAD works. What I wasn't prepared for was looking down, seeing the tubes coming out of my chest, going to this machine I've never seen before. There's red stuff in it. And I was like, what is that? That looks like blood. Is that my blood? And they explained to me, you lost your kidney function during surgery. You're on dialysis now. No idea what's going on. So that was why I needed two transplants. And the doctors decided to do the heart first because it was a more vital organ. Make sure that takes and is up and running very strong. And then add the kidney on secondary.

SPEAKER_03 27:01

So I'm going to go back to what I said earlier. I I gave you more than one word, Ursula, but I clearly the word I should have picked is resilience to describe Charles. Resilience.

SPEAKER_00 27:12

Yes, absolutely. That is what I always say when people ask me one word to describe yourself. That's it. I can take a punch, that's for sure. And life has given me a few.

SPEAKER_03 27:22

There's a lot to unpack on that health journey, but in the interest of time, I want to get to your motto, which I think is now obvious to everybody who's been listening to the story, which is you got to keep banging. And so tell me a little bit about the ways that you've been keeping on banging since your transplant of both the heart and the kidney.

SPEAKER_00 27:44

Let me explain fully keep banging. Okay.

SPEAKER_03 27:47

Yeah.

SPEAKER_00 27:47

Two words. Lifeless obstacles in all of our paths. Our job is to keep banging at the one directly in front of us till we knock it down. Then we move on to the next one because there's always going to be a next one. So you never give up, no matter how bad the odds are. You just hang in there and keep banging one day at a time, one obstacle at a time.

SPEAKER_03 28:05

That is so true.

SPEAKER_00 28:06

That's the only thing that's, you know, worked for me, all the philosophy and that stuff is just stuff's gonna happen. You don't give up and you prioritize whatever is the most important thing for me to stay alive today, that's what I'm gonna tackle. And then you move on to the next thing and on down the line. But as far as what you said, what I've done since then, one of the only things I ever asked to do was to be a part of the TAP program, the transplant ambassador program, which is the most rewarding work that I've ever done. Because it took all of this craziness and it gave purpose to it, that I could sit across from someone and say, This is all the stuff that's happened to me, but I'm still here. Tell me how you got across from me, and then let's put our stories together and see if we can make a more positive outcome by working together on down the line. And that was where it all started. So, what I was gonna say was I had that weird thing where I woke up and found I was on dialysis, didn't even know about it. And I was very angry, I was very frustrated, very confused, angry because I didn't even know or felt that I've been informed that my kidneys were at risk, although they could have told me I was in a bad state. Then I was confused because you're working on my heart. I don't even know how my kidneys are involved with that, and then frustrated because there's nothing I can do. So once I became ambulatory, which was my favorite medical terms, that which meant I could get up and walk, I just walked out of my room, went into the first door that was open, happened to be another patient's room, just unloaded. They were kind enough to listen to me, and then they said, Hey, let me tell you what my story is. And in that instant, everything changed for me, my whole perspective outlook in that, because they're saying things went wrong with them. So I'm not alone, I'm not the only one that's ever happened to, which is what you think whenever you get punched in the nose, you can't see too far past that pain. But if you step back, then you get that broader perspective. And then number two, well, they're sitting here talking to me, so they're still alive. So obviously they found a way to deal with their stuff. If they can do that, I can do that too. And that is the message I want to share with everyone is I'm there's no training for this or whatever. I'm just a guy that decided from the beginning, whatever life throws at me, if it doesn't kill me, then I'm gonna conquer it. And if I can do that, then you can do that too. And I'm living proof that a lot of stuff can happen and you can make it through it. And so that is what I wanted to share. And TAP gave me the opportunity to do that, and it was super special because I was doing it at the hospital where I actually did my dialysis in center that I was trying to do home hemo, and then I got to go back as a TAP ambassador and talk to the people in the home hemo training unit, and that was where it all started.

SPEAKER_03 30:53

And the rest is history, as they say. But Charles, you're also very much involved with the African Caribbean black community, we'll put it that way, because there's more words to it, but they're escaping me right now. And so tell me a little bit about your involvement with them and what took you there in the time we have left. And if we need to explore this further, maybe it'll be a subject for another podcast.

SPEAKER_00 31:13

But I part two.

SPEAKER_03 31:15

Exactly.

SPEAKER_00 31:16

No, it's very good, very good. So it kind of links with TAP. The thing that we're saying is that the best possible outcome for someone with kidney disease or one of the best choices is to get a living kidney transplant. I received a deceased donor, but a living kidney transplant would be even better. And when they were getting the ACB organ health YouTube channel advisory committee together, they came to me and said, Hey, we've done some research, it's called the Action Project. And one of my mentors and great friends and teachers is uh Dr. Isvan Muchi. And his research showed that as a black person in Canada, I would be 60 to 70 percent less likely to receive a living kidney donor transplant than a white person or the general population.

SPEAKER_03 32:06

Interesting.

SPEAKER_00 32:07

And that really hit home with me because I'm selling this to everyone that I'm talking to, find a living donor, but I can't get it myself.

SPEAKER_05 32:15

And unpack that a bit more for us. What's the why as to how that happens?

SPEAKER_00 32:20

There are lots of reasons why that's just the data. When you just run the raw numbers, that is what the percentages are. So with the ACB Oregon Health YouTube channel, we needed to get that information out there. And one of the things is I don't see faces that look like mine in all of my health journey. There's uh one story that kind of comes to mind right away going back to my hospital away from home, Toronto General. Of course, with all the work they've done, they put into me. I'm still alive, I'm a great champion of the hospital. It's one of the best hospitals in the world. Before the pandemic, um I think in 2018, 2019, they said, Hey, we're gonna start a series called Someone Like Me. And it was about heart disease, and you can't tell, you know, what uh there's no typical uh look to a person that has heart disease. So they said, Would you be willing to be a part of this? I said, Yes, absolutely. And they uh did an article, had a picture of me sitting on a picnic bench across the street of the part from where we live, and it the caption was this is what happens when the world's best heart team goes to work. I'm the result, and that is true because they saved my life. And I was supposed to be the first, and then a little while later, they're supposed to be a second person and so on, just to show that somebody like me could be anyone because of the pandemic timings, everything. My picture and poster stayed on the main elevator door in the lobby of Toronto General Hospital for over two years, never changed. And I am thinking at first it was like really cool. Well, I have a picture of me, like, hey, that's me in front of it. But I got to thinking as I learned more about how the ACB community doesn't have access to these life-saving cures or treatments, excuse me, the word is not cure, so no cure for kidney disease, then the treatment, then that's wrong, and we need to do something about it. I found out other stuff as well, but the EGFR calculation, that's what I was trying to think of.

SPEAKER_05 34:28

Sure. Do you want to give the for our listeners the long version of that?

SPEAKER_00 34:31

Because you're referring to the filtration rate of the kidneys, estimated glomerular filtration rate, which basically is how your kidneys judge the function, how well it's working. And it was artificially inflated for people of African descent. And I'd seen that on my blood work because I did a lot of blood work, as I'm sure you can imagine, and it said for people with African descent, multiply this number by 1.15, which for years I'd seen it, and my doctor said this is just how we do it, and didn't make any sense. But then with Dr. Muchi's research, that's part of it, is if you and I have the same kidney function and raw number, but mine's multiplied, that inflates it that says my kidney's working better than yours when it's not, which means that I'm referred later uh to a neprologist or whatever, which means I'm referred later to transplant specialists. And by the time I actually get to the point that they say, Hey, Charles, sorry, your kidney function is to the point that you got to go on dialysis. That's it. And that's not right.

SPEAKER_03 35:36

So your numbers are uh they're essentially misleading because they give the impression that your kidney function is higher than it actually is.

SPEAKER_00 35:45

That is absolutely correct, and that has hurt a lot of people. So that was one of the things besides tap that I worked on trying to get changed. And as of last year, we were able to do that. That's no longer everybody said that we don't use that. We don't use a race. I'm like, why do I have to see the verbiage every time I get my report? Because that still makes me feel some kind of way when I have to read that, and now it's gone.

SPEAKER_03 36:08

Interesting. So I'm very much involved with that organization and getting the message out and showing people of the African-Caribbean black community a face that looks like them, like you said, so that they can relate and understand your reality. Because I remember when I attended that talk, there was a lot of talk about anti-black racism. And I'm a white person, it hasn't been my experience. I always am fascinated to hear the stories because it's all part of that learning to understand, to be able to understand what other people are facing over and beyond what every one of us is facing in our healthcare system, which has a lot to they did great things for you, but we all agree that there's a lot of work to be done to improve it.

SPEAKER_00 36:53

Absolutely. And that's my thing is I have had a wonderful experience as far as the treatment that I've received and the process and that. But I know my story is not the only story. There are far too many people that have had bad experiences, and that was what uh I was trying to get to with the someone like me with my poster on that door. I had to think after a while, was it up there because they were celebrating a great story or were they celebrating a rare story?

SPEAKER_03 37:28

Yeah, that's a good point.

SPEAKER_00 37:29

And so I want my experience to be the norm, not the exception, yeah. Not the outlier. Exactly.

SPEAKER_05 37:38

I want to say that really resonates with me, and I want to say thank you for sharing that. I think it is really important that we all get to see people that look like us. I'm the only white blonde person in my house. And if I wasn't, I don't think I would notice things that I do. And representation really matters, and it's really important. So thank you for all the work that you're doing sharing this with us with regards to the African Caribbean black community.

SPEAKER_00 38:04

Thank you for the opportunity.

SPEAKER_03 38:06

So let's end on something fun. Charles, tell us about one of your passions outside of the Transplant Ambassador program and how things are going there.

SPEAKER_00 38:18

The thing that I love the most that gets me through the winter in Canada, since I'm a Georgia born and bred human being. This is the worst time of the year for me. But the NFL, the National Football League, my hometown hero, Atlanta Falcons, did not have a great year this year, as they haven't since everybody knows 28-3 in the Super Bowl with the Patriots that we lost. We blew the biggest lead in Super Bowl history. Our team has never recovered. We finished 8-9. They fired the coach this morning and the general manager. Things are tough. We got to keep banging. We got to go back to the drawing board and see what we can do. But now the playoffs are here. And one of my nephrologists, actually, the nephrologist here in town, is a huge Buffalo Bills fan. So I'll be cheering for the Bills because this could be their year. There's no Patrick Mahomes, there's no Lamar Jackson. This is their best shot. If they're gonna do it, now's the time for them to do it. So go, Bills.

SPEAKER_03 39:17

Charles, I think your team should hire you as a motivational speaker to get out of their funk and go out there and keep banging. Possibly win next year.

SPEAKER_05 39:28

I love that. And Charles, I know there has to be more conversations because our teammate Brent is a huge football fan and even does a bunch of coaching at the university. So more conversations coming. I'd love that. But thank you so much for sharing everything you did today. Your journey, keep banging, is going to be ringing in my head for the rest of the day, as well as resilient. And the one word that comes to my mind is actually motivational.

SPEAKER_00 39:56

Thank you. Oh my God, you guys hit both of them.

SPEAKER_05 39:59

Really, Christine, your comment to that he could help motivate the team, I think is a really good one because that's what I was thinking of as well. And also thank you for all the work you're doing with regards to representation matters and educating on how important it is that we're able to see people that look like us and understand different perspectives to help make things better collectively for everybody that's involved.

SPEAKER_03 40:24

Absolutely. Thank you so much, Charles. It was a pleasure seeing you once again.

SPEAKER_00 40:28

Good to see you too. And hopefully this won't be the last time. You guys take care.

SPEAKER_03 40:32

I'm sure it won't be. All righty. More time coming. Have a good one. Bye-bye now.

SPEAKER_04 40:43

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