In this episode I sit down with a 26 year old bodybuilder who wears an artificial heart while working out.
- How AJ ended up with an LVAD [2:14]
- How he ended up with heart failure [6:12]
- What he is trying to do with Hearts at Large [7:24]
- How to register as an organ donor [9:08]
- What he would want to tell the engineers of his medical devices [13:50]
- His fitness journey and what it’s like to workout with an artificial heart [20:59]
- How Meghan dealt with Hepatitis C treatment [25:15]
Andrew Jones is a bodybuilder and fitness junkie who wears an artificial heart. He is the founder of Hearts at Large.
Hearts at Large is a non-profit organization with the goal of supporting, inspiring, encouraging, and providing financial assistance to individuals awaiting life-saving organ transplant. The organization also strives to increase the number of registered organ, eye, and tissue donors
– [Narrator] Are you ready to master the waves of medical device product development? Well, wax up your surfboard because you are listening to Inspired by Imua, and here is your medical device product development expert, that Hawaiian-hearted hostess who will help you hang ten, Meghan Alonso.
– [Meghan] E komo mai and Alooo-ha! You’re listening to Inspired by Imua, where we help you master the waves of medical product development. Each week we interview guests that educate, guide and inspire to give you the skills that you and your product need to hang ten. If this is your first time listening, Imua is spelled I-M-U-A. It’s a Hawaiian word meaning to advance forward with passion despite rough waves. There are plenty of those in medical product development, but keep listening because we’ve got you covered. So I have a special guest with me today. He’s been through quite the journey. If you remember a few episodes back I interviewed a woman named Jan Peuquet, and my guest today has the same thing that Jan has, except he’s very unique in that he’s only 26 years old, and he’s a body builder. And he works out with a backpack on his back, and so when people ask why do you have that, he says well actually, this is my artificial heart in here. So he’s gonna tell you all about it, and tell you why you need to keep moving forward with medical engineering to design new heart products. So please help me welcome Andrew Jones, or AJ to our show. So AJ, are you ready to hang ten?
– [AJ] I am, I definitely am. It’ll be a first, but I think I can handle it.
– [Meghan] I think you’ll do just fine in our little ocean here. So I kinda gave a little bit of your background, but take a few minutes and really give us the story of how you ended up with an LVAD.
– [AJ] Well, it dates all the way back to 2012 when I first started having my symptoms of heart failure. It felt as if I was breathing through a sponge. That would be the best way to explain it. That’s been the only way I’ve been explaining it, and it was just difficulty breathing for about two years. And my body was able to compensate for that quite well, but of course there was a tipping point where I felt ill quite suddenly, very ill. I was having pneumonia-like symptoms and coughing, feeling light-headed and just tired all the time. And I felt weak, and it got to the point where I wasn’t able to work out or go to work. Found myself in my bedroom all the time. And it was kind of the opposite of what my life was before. I was very active before, and going from doing stuff with my friends and going to the gym, and basically doing all the things that I wanted to do, I found myself doing the exact opposite, and in a way that was quite depressing. And you know, 2015 is when all of that kind of, everything started, came crashing down, and I found myself in the hospital awaiting a heart transplant. And I was there for about a little bit over four months. And I was discharged–
– [Meghan] You were in the hospital for four months?
– [AJ] Yes.
– [Meghan] Wow.
– [AJ] Yeah, before then I was in and out of the hospital maybe for a few days or a couple weeks at a time, but my last stay was for the long haul. And the original plan was to wait in the hospital for the heart transplant, but you know, the universe had different plans. And I was fitted with the Left Ventricular Assist Device because my condition was beginning to further deteriorate despite being on all the medications and medicines that were allowing my heart to pump strong. And so that was the next step, had to be the next step for me to take because that would allow me to, they consider this device to be a bridge to transplant. So this is what’s gonna carry me over, allow me to continue waiting until I get my call for my transplant.
– [Meghan] Um hmm, so you’re on the list already.
– [AJ] Yes, I’ve been on the list for well over a year, yeah, and coming up on a year with the device as well. And I was able to be discharged from the hospital, so that was the very good news with getting the artificial heart. And that’s essentially, you know, where I’ve ended up today. It’s allowed me to regain an immense amount of normalcy back to my life. I’m able to see my friends. I’m able to do the things that I love and more, especially nowadays, and it’s almost challenging to remember that I’m actually still a heart patient because I feel very normal, and I feel very strong. So I can’t forget that my health and my heart condition remain top priority no matter what.
– [Meghan] Um hmm. So LVADs, you usually see older patients with them. What’s unique about your condition that a very healthy 26-year-old, someone that works out all the time, is in body building, takes good care of himself, how did you end up with heart failure?
– [AJ] It started off as a virus that had attacked my heart. And although the virus was, had left, my body fought it off, it left damage that caused my heart to go into heart failure, to succumb to the cardiomyopathy. And unfortunately, this happened way before we could catch it, so there were no signs of what virus it was. And I’ve been through many tests to test for cancers and various other common diseases, which they all came back negative. But it’s beyond the point now where we worry about what virus it was. I mean hopefully we can still figure out, try to get some sort of clues as to what really caused it, and hopefully prevent this from happening to anyone else. But again, the main priority is just getting the heart transplant and moving forward from there.
– [Meghan] Um hmm, yeah. So besides getting your heart transplant I know you’re working on something large. So tell us about that.
– [AJ] So a couple of things that I’m working on I would consider pretty large. One of them is Hearts at Large, which is my non-profit charity to, in an effort to raise awareness for organ donation to promote the miraculous process of what it means to become an organ donor, what that does for so many people. A lot of people don’t understand that when you register as an organ donor you can essentially save up to eight lives. And when you include organ ion tissue donation, you’re looking at saving eight lives and potentially enhancing more than 40, 50 lives. And one of my favorite things to do is to spit these facts at people and see their face kind of light up and say wow, is that really true? And yeah, you can fact check it. But yeah, that’s the main initiative with Hearts at Large. There simply just aren’t enough people registered as organ donors with the 120,000 plus people waiting for organ donation. That doesn’t even include the potentially millions of people who don’t have access to stable health care, who can’t make it into a hospital to even be diagnosed. So millions of people are passing away from organ failure alone, not just from waiting for an organ or for an organ transplant.
– [Meghan] So I know people can register to be organ donors when they get their license or they renew their license. But what are some other ways that they can do it?
– [AJ] People can register as organ donors online. Now that will vary from state to state. For example, here in Connecticut you can register as an organ donor right online, and you don’t have to fill out any sort of change of address form. But I believe New York would be one state that does require physical paperwork to be completed. And you know, with everything going digital these days, I just don’t understand why we haven’t, well I shouldn’t say that. It’s just now becoming a trending topic, especially with Apple beginning to include the ability for people to register as organ donors through their smartphones. So they’ve created a centralized system for people to do this seamlessly, and that’s going to, I see it… changing so many things in the organ donation space.
– [Meghan] So by the way, if no one knows what we’re talking about with that, if you have an iPhone, I just got mine out to look. So I think maybe it’s iPhone 5 or newer, or maybe six or newer.
– [AJ] Well, what it is it’s gonna be a part of the new iOS software that doesn’t come out until the fall I believe. So that’s what we can look forward to coming from Apple. Very exciting.
– [Meghan] So right now, actually right now it’s on my phone. So just so you know, if you pull up your phone, and you have it locked. So right now I’m pulling mine out, and it says slide to unlock, and then you have to enter a passcode. There’s this emergency button here on the lower left-hand side so that if a firefighter finds you, and who is this person, then so they click that, and then there’s something that says medical ID. And I have mine filled out. It lists your medical conditions, your allergies, instructions. Like I have my dog Abby that I’m concerned about, so I say if Abby is in the car with me, please take her to the nearest pet hospital if she is injured, and I will pay the bill. And then that lists your emergency contacts, and down all the way at the bottom it does say organ donor, and so I have mine marked yes. So in case you guys haven’t done that, and you want to do that, that’s a way to do that.
– [AJ] Yeah, definitely, mine is filled out as well. It’s really… It’s really important, and I don’t see why you wouldn’t wanna do something like that, a little bit of time to further protect yourself. You might as well take the two minutes that it takes to fill out that information. I’m an example of what it means to, you know, nobody’s invincible. Tomorrow’s not guaranteed for anyone. I consider myself blessed because I took it upon myself to start weight training and exercising when I first went to college, well taking it seriously and making it part of my lifestyle. I’m not sure where I would be if I decided not to do that and just kind of go with the flow, not exercise and eat whatever I want and still get this disease. Who knows where I would be? So it’s really important that we try to encourage people to take strides immediately regarding your health, whether it be exercising or filling out your medical ID on your phone. Whatever it is that can improve your health and protect you, you should be taking the initiative to fulfill that.
– [Meghan] Yeah. So back to the LVAD, if you were to see, oh do you know what brand yours is by the way?
– [AJ] My LVAD is made by HeartWare.
– [Meghan] Okay, that’s a popular one.
– [AJ] They were recently acquired by Medtronic, so that’s another name that is, anybody’s familiar with that. And I also have a defibrillator in my upper left chest, and that one is manufactured and engineering by Boston Scientific.
– [Meghan] Okay, so if you were to meet some of those engineers that worked on this product, or anyone really involved in the innovation of the product, what would you wanna tell them if you wanted to thank them, but also kind of your feedback on hey, next generation you should do this?
– [AJ] It’s really funny you say that because maybe two, two and a half months ago I actually got in touch with the Vice President of HeartWare, and I left him a message. And he put me in touch with somebody from their marketing department. And of course I was very excited to share with them what they have essentially created, what one of their devices is doing for someone. I know that they’re aware of the people that they’re helping, but I realized how my transformation, I realized what kind of impact that I was having, and I had to let them know that this was, everything that was going on. And of course, I had my thoughts and my ideas of what could be in store for the future of their devices. And just to list a few, obviously one of the big ones that a lot of people talk about within LVAD support groups is carrying the device itself. Obviously we always want our devices to be slimmer. We want them to get smaller, and that’s what’s been happening, especially with smartphones. Everything’s getting thinner and smaller and smaller, and they’re doing this and that to it. And that’s great and all, but there’s not a lot of talk about it with the medical devices. Granted that there aren’t a lot of people with my device. There may be 10,000 people with my specific device, but that doesn’t mean that we can’t have a voice in how these devices are being created. So one of the main things, one of the hottest topics for the LVAD community is how to carry this device. They provide you with a satchel or a waistband or like a fanny pack type of accessory to carry your computer, controller and batteries. And I took it amongst myself to do some digging, and I’m currently carrying mine in a waterproof Patagonia satchel pack. And I’d try to show it to you, but we’re on a audio podcast so that’s kind of–
– [Meghan] I’ll have some pictures–
– [AJ] You can see it on my Instagram, yeah, but I found this one because it works well for someone who’s active. It sits close to my body. The drive line is secure, and of course it’s waterproof, so it’s safe from the elements. I feel like a little more effort could be done to improve the accessory because not only is it important to have something that’s very safe and compact, but you know, these people are walking around with a medical device that some people may not feel too confident about being in public with. So something that would be seamless, that would not really draw attention because I’ve been walking around with this device for a very long time, and people don’t really know what it is unless they ask or I tell them. And I do get a lot of people that ask. They ask oh, you carry that backpack around, and I’m confident enough to share exactly what it is, but that may not be the case for everyone. So that’s something that should be considered. And regarding the functionality of the device itself, people with this device are required to have their blood drawn every week to measure their INR, which is a measurement of our blood’s viscosity, how thick it is. With the device your body wants to reject the device, so it wants to clot blood around it because it’s a foreign object. That puts people at risk for stroke, and we are put on warfarin, Coumadin medication to thin our blood. And this medication is very, very powerful, and incorrect dosing could put you at risk for a brain bleed or any type of internal bleeding. So I would say that we could take the technology that measures our INR and place it into this device. Of course, we could still have our INR measured at a lab every once in a while, but maybe if we were to have a readout of our INR maybe constantly or every few hours, however the process would work, we could have people be very aware of hey, my INR is too low or it’s too high. I should call somebody and let them know right away.
– [Meghan] Yeah, almost like they can do it with, the technology is there with blood glucose monitoring.
– [AJ] Yeah yeah, and even if it takes 12 hours for an update or a day, that still beats a week of making sure that you’re on the correct dosing. We could improve the response time to a high or low INR, and we could keep people at a therapeutic range for longer. For not longer, but… Just to keep them within a therapeutic range and not, have a lower risk of going outside of what they need to stay at.
– [Meghan] Yeah yeah, that’s some great feedback.
– [AJ] Yeah, I really do wish to actually get the right platform to speak on that. I think that that’s something they could definitely consider at least. But HeartWare is making, again they’re making amazing strides to advancing their technology. They are in the early stages of creating the next ventricular assist device which would be fully implantable. That’s the goal, so there would be no external accessories. There would be an entirely different ballgame, but especially with in the medical field these things take a lot of time because these are peoples lives that are essentially in their hands. So even then with a new device being introduced in the medical field, insurance companies have to approve it. They may not approve these things right away because they see it as a liability, as a risk. There haven’t been enough trials to see that this is a device that is reliable. So until then there are things that we could probably, little tweaks that we could make to improve the devices that we already have.
– [Meghan] Yeah yeah, and you are on a good platform right now for getting your feedback out there. People are gonna listen. I always tag the appropriate companies.
– [AJ] Oh perfect, excellent.
– [Meghan] So I tagged Medtronic.
– [AJ] Yeah, I’ll make sure that they see this, too.
– [Meghan] Yeah, but keep in touch with your contact there, and just be proactive and say hey, I really want to help you guys shape the next generation.
– [AJ] Oh yeah, absolutely, that is a very big goal of mine. I would love to do that.
– [Meghan] So you’ve got a lot of things going on. You’re continuing on your training, so tell us more about your training.
– [AJ] Well, with any sort of fitness-related journey, you have to start somewhere. There is rarely a day or time for you to get up and say you know what? It’s time for me to change my life. I’m gonna go get in shape and do whatever it is that I wanna do. The best time to do it I would say is not just start right now, but… Yeah, that is the best time to do it, right now. Even with you’re not even feeling comfortable because it’s going to be challenging. And if you, I feel as if you immerse yourself with this challenge, you’ll just be, you’re already gonna start off stronger than the next person.
– [Meghan] Yeah.
– [AJ] There really is no excuse for you not to be taking care of your health. That being said, I’m already a fitness nut. Have been, never have lost that drive. I was eager to return to the gym, but before I could I was recommended to attend cardiac rehab three times a week for a couple of months. And I eventually finished the rehabilitation process, and while I was there, maybe half way through is when I started returning to the gym, starting with light weight, getting my body used to moving again because in a hospital room for four months the most you can do is walk. You wanna take things slow. And that goes with someone, for someone who is just starting on their fitness journey for the first time in their lives, definitely take it slow. You don’t wanna do too much and to put yourself at risk for injury or illness. But you know, I took it slow. I looked up what others were doing, and that’s where my motivation really kicked in because I noticed that not a lot of people with my similar condition and my device were doing this. So I said you know what? That’s gonna be me, so I took baby steps. I kept my doctors in the loop with every single thing that I was doing, down to the exercise. At first because they have to go through your chest to get access to your heart, you wanna keep the chest area kind of, you know, that’s the danger zone. You don’t wanna have anything–
– [Meghan] You’re not doing a lot of pectoral flies.
– [AJ] Yeah, at least not in the first few months. But again, the best time to check it is, you wanna have your doctor kind of clear you for that. They wanna make sure that everything’s healed, take an X-ray, whatever it is that they need to do, have your doctor clear that first. So I was cleared for that, and I began, still I took it slow, and everything else was just baby steps. And I didn’t give up, that was the main thing. And I felt very weak the first week or two going back to the gym. I felt very weak, but not discouraged because I knew that this is something that I’m very, very passionate about. And I knew before even I got sick, before I even had symptoms I told myself that if I had to start over today I would not have any remorse about that. I wouldn’t be upset in any way because I would just be able to take what I already know, reapply it and watch how fast I can bounce back. And that’s the exact, that is exactly what I did with having this device. And I would say that I have bounced back, and I’m still in the process of bouncing back. Of course the goal is to get the heart transplant, and then from there I am going to take things to the very next level. But again, you have to take things in stride. You have to be patient. These results will not come overnight, let alone a week or a month, but you will definitely feel a difference. You will feel yourself getting stronger, and you have to believe in yourself. You have to know that that strength is real, and that if you continue to do this you will, you will see great progress.
– [Meghan] Yeah, and I’ve been there with you. I went through a similar experience. My mom contracted hepatitis C from a blood transfusion way back in 1974. But we didn’t know this until fast forward, it was ’98 when we found out. And we found out that not only my mom, but I had it, and my brother had it, and went through some treatments for that. And I too come from a very fitness background. I was a gymnast all through college, and ever since college I still have been really active in dance and Pilates and crossfit, and I was a personal trainer for a while. But the last treatment that I did in 2011 to 2012, which finally just knocked it all out, I mentally made the space for it, and I think that’s really important, too, to just take some time off. I took some time off work, and that was my job, to stay healthy through this treatment. And everything from my mental attitude, I moved to Hawaii because I used to live there, and that was my space where I’m just in tune with God spiritually, and I have a really good church community there, so that side. I was eating really healthy. I went on walks. Like you, I couldn’t really exercise much, but I did what I could. And I was on a low dose of chemo once a week, so my hair was starting to fall out, I got anemia, I had to take a weekly injection to keep up my blood hematocrit and my hemoglobin. And it’s tough, but you know, you have to imua. You have to make it through.
– [AJ] That’s right, yeah, imua, that’s right. I’m gonna start saying that now, I love that.
– [Meghan] Yeah. We’re so blessed in this country–
– [AJ] I want a shirt. With everything we have. Yeah, I should make them. But everything that’s given to us, and I feel like people just throw it away sometimes. And they sit all day. They’ve become fat and unhealthy. And then I think that’s the point where they just need to look at you. I mean, like look at AJ. If he can do it, and he has this LVAD strapped to himself, why can’t you get off your butt for half an hour a day?
– [AJ] I know, that’s exactly what I want people, that’s what I want to instill in somebody. If they come across one of videos or one of my Instagram pictures, I want them to start to, I want them to… Like let’s say you’re late at night, and you find my pictures late a night, I don’t want you to be able to fall back asleep because I want this to be on your mind, at the front of your mind until the next day, and then that’s all you think about. Because if you have something that’s on your mind 24/7, you need to act on it. Good or bad, you need to act on it.
– [Meghan] Yeah, and I know a lot of people listening today, it’s hard developing a medical device, and it takes a lot of mental energy.
– [AJ] Oh absolutely.
– [Meghan] And you probably feel like you’re working non-stop, but that work isn’t gonna do anyone any good if you become unhealthy and unable to finish your dream that can benefit someone else.
– [AJ] Yes.
– [Meghan] Take care of your health.
– [AJ] Yeah, absolutely.
– [Meghan] All right, well that turned from device story to motivational story.
– [AJ] Maybe a little change in pace there, shake things up a little bit. But yeah, I hope people are motivated to really just to better themselves, and then take the motivation that they built up themselves and spread that to everybody else.
– [Meghan] Um hmm, so where can people find you if they’re interested in not only your personal journey through all of this. I know you have some channels for that, but also the Hearts at Large.
– [AJ] Yes, heartsatlarge.org. It’s an official non-profit 501c3 organization. We’re registered in the state of Connecticut, and you can find more about our mission there. We’re still in the process of adding more content to the website. We’re not very fully staffed at the moment, but we are looking to add more stories to the website that cover the people that have undergone, who have been affected an organ or a tissue transplant. And right now we’re really trying to put some faces to organ donation, some faces and stories. And eventually we’ll have a very, very big platform, and a very, very big voice to really make organ donation the next cool thing to do. So heartsatlarge.org. That’s on Instagram at heartsatlarge, and on Facebook you can just search it, heartsatlarge. The big red logo will pop up. Click away, have fun.
– [Meghan] All right, and then what about your personal channels?
– [AJ] And if you wanna learn more about my story, you can find me on YouTube, AJFitness. Instagram and Twitter, fitnesswithaj. And more recently Snapchat, AJFitness.
– [Meghan] All right, yeah I just started Snapchat, too. I haven’t fully adopted it, but I can see the power in it.
– [AJ] I’m still kind of adjusting to it, too, but yeah, it’s a very powerful platform, and it’s very, very new, very intuitive. It’s very great, it’s amazing.
– [Meghan] Yeah. Okay, well thank you so much for joining us today and giving us this great story to act on. So imua, everybody. So while you’re over there working hard, jump in our Facebook group. If you just go to Facebook.com and you search Inspired by Imua, you’ll meet other people also developing medical devices in there that you can talk with and just share the journey with, share those rough waves with. So we publish a new podcast every Tuesday, so I’ll catch you next Tuesday, and until then Imua.
– [Narrator] Mahalo for joining us. If you’re new for riding the waves of medical device product development, or if you’ve been in development for a while already, Inspired by Imua is here to surf with you. Wanna be a master of the waves? Text hangten, that’s all one word, H-A-N-G-T-E-N, to 44222. We’ll send you the most common wipeouts companies make in product development so you can avoid them and reach master wave status. Again, that’s hangten to 44222. We publish a new episode every Tuesday, so catch us at inspiredbyimua.com. Imua.