Hear Joaquin Ramos Jr. detail his journey with aortic dissection and Marfan syndrome

Joaquin Ramos Jr. had an aortic dissection on July 31, 2020, and soon learned he had previously undiagnosed Marfan syndrome. Here, he tells his story.

Joaquin Ramos Jr.:

My name is Joaquin Ramos Jr. I had an aortic dissection, coincidentally, on July 31, 2020, so honestly, how I found out was post-surgery. I had an emergency dissection. I didn’t know I had Marfan syndrome. I never knew any of the signs or anything, wasn’t really educated on a lot of that. I lived a normal life. I played basketball. I played college basketball at the junior college level. I don’t know if I’m in the minority or not, but a lot of the things that I did do, I wasn’t supposed to be doing, but I was blessed enough that I got to the point that I did.

The day that I had surgery, I was watching TV and it was COVID; we were all bunkered down at that moment. All of a sudden, I just hear, “Tick, tick,” and then like an explosion like, “Boom.” I was sweating and my house was really cold, and I was like, “Something’s wrong,” and contacted my sister. I mean, my wife at the time, she was just kind of worried or concerned. My sister, she’s a pharmacist at the VA in Miami. She said, “Go to the hospital. I mean, you have nothing to lose. I can’t imagine you’re having a heart attack or anything at this moment.”

I was scared to go to the hospital. It was COVID. My wife at the time, she was scared too. I was just like, “All right, let’s just go. It’s better we be on the safe side.” We did that and went there. They were kind of doing kind of the regular things, the echo, EKG. Things were kind of normal, but they were like, “Let’s do a CT scan.” When they did the CT scan, they saw the rupture in the thoracic part of the aorta. Then a nurse comes in, I’m waiting there in the ER, and she’s like, “We need to take you to Memorial Regional to transfer you for emergency aortic dissection.”

I’m just like, “Do you guys have the right patient? Are you sure? I’m 38 years old. There’s no way this could be happening.” They took me in. It was kind of grim because they were like, “This is really serious what’s happening here right now.” You kind of process things and you’re like, “This could be the end game here for me.” I ended up calling my mom. I called my sister to tell them I loved them. Called my best friend as well, Mike, and told him, “Listen, I don’t know what’s going to happen here. I’m just going to tell you that … Because if this is the last time you and I talk, I want you to hear it from me first that I love you. Thank you for being … You made this life better for me.”

He was just like, “No, dude, don’t think that way. You need to be a fighter like you always are and just go.” I said, “Okay, I will,” and went into the operating room. I’ve had operations before, and it’s kind of normal, everybody’s pretty … They’re joking around and everything when it’s planned. This one, the whole team was really serious. When you get the surgeon that tells you, “Hey, this surgery typically works. In your case, I mean, I don’t know. I don’t know if you’re going to come out of this.” Life gets real on the standpoint. They brought in my wife at that time to kind of … she started kind of getting emotional and I was strong for her. It was just amazing in that moment that time freezes in a way when you’re that close to the end game, and you just are so locked into the present moment.

The other thing I thought of in that moment was kind of regret. I had a lot of regret there because I told people, a few people that I loved them, but there was a lot more people that I couldn’t call and tell them, “I love you,” so that whole experience kind of gave me a … How I live my life now, I just live my life now in the present moment. Let me take advantage, today may be a great day. It may be a bad day, but I’m going to give it my all, whatever I’m doing.” That really taught me, that experience itself taught me a lot about gratitude. At the same time, I learned a big lesson of forgiveness from that component too, if you want to get into that as well. That’s another part of this.

But I mean, those are I think the 2 guiding principles right there, just being in gratitude and forgiveness because a lot of things happen. You’re just like, “Why did this happen? Why do these events happen?” Sometimes things happen because they birth new things. Obviously, my connection with The Marfan Foundation now and my life now is kind of prominent because of that.

I remarried again, but at the time I was also going through a divorce. All these things are happening and you’re just like, “Why?” I’m a good guy; why are these things happening? Heart surgery, a divorce, and I think those are just life lessons, and I think what helped me get through that time was mental health. I’m working at The University of Miami. They have a faculty and staff assistance program. A former colleague of mine at Georgetown, she retired and we talked. She told me the importance, “Hey, you need to talk to a therapist, talk to a professional that’s going to help you a lot to get through these things.” People take it for granted, mental health. To this day, I’m seeing my therapist. To this day, I see her once a month. Maybe things are going well, it’s good to talk because it’s kind of giving you a different perspective.

It’s great to talk to somebody that doesn’t love you and doesn’t have any skin in the game. It just can give you, listen to you, and give you kind of an unbiased opinion about things. We all go through things in life, and that mental health component, part of health. Whether you have a connective tissue disorder, or whatever health situation, maybe it’s a family situation because families go through things too. With my family, my mom and sister, my uncle and aunt, they went through a lot, kind of that experience and that coping through that.

How Marfan syndrome came into the picture was the surgeon, Dr. Cortelli, once he was done … I mean, my surgery took about 12 hours. He told my mom, my sister, and my wife at the time, “Hey, does Joaquin have Marfan syndrome?” All of them were like, “What?” It’s not like my mom ever did not take me to a doctor. She’s someone that goes to the doctor for anything. When we were kids, she would always take us to the doctor. She’s like, “I’ve never heard of that before.” I went and did genetic testing with Dr. Yusupov at Memorial Regional. They have a Marfan clinic there.

Then that’s what gave me the diagnosis; I have Marfan syndrome. That hit me with a ton of bricks. I was just like, “What? How is it that I’ve lived this life up to this, and I didn’t even know I had this all my life? Now this pops up.” It’s kind of interesting, just how it was so dormant, and then in a second, it just happened.

I found out that I officially had Marfan syndrome 2 months after surgery, 2 or 3 months after surgery. I was recovering, and again, when he mentioned it, everybody’s like … I met with my new cardiologist. Again, I never had any care with heart, none of that, so I was establishing care with now, Dr. Berlin, who’s my cardiologist. He said, “Here at Memorial, we have geneticist, Dr. Yusupov. You should kind of do those tests.” Then you did the blood test. Then I think I got the results. I don’t remember how long it took.

Then we had to telehealth, because again, we weren’t meeting in person from that standpoint. He tells me, “Okay, yeah, you have it.” Then my mom beats herself up. It’s like, “How did I not know this?” It’s interesting because my sister saw our doctor, pediatrician growing up, because she took her daughter there. I can’t believe that he still practices to this point. But she took him, and she said, “Hey, did you … My brother had Marfan syndrome.” He’s like, “Oh, my goodness.” He just says, “Now that makes so much sense because I thought about it, but since Marfan syndrome was such a rare thing back in the 1980s, 1990s, I just never thought to bring it up because it’s 1 in 5000 people,” or whatever the percentages were at that time.

He was beating himself up too, but it’s interesting. I mean, even the best, everybody makes mistakes. It’s human error from that standpoint. It really starts with awareness, knowing the signs. The thing is, we don’t want to think about the negative of things. We don’t want to address the elephant in the room ever because we want to just be positive. I’ll deal with that later. But just like The Marfan Foundation, they do an incredible job of creating that awareness in the community through their website, marfan.org. Here are the signs. Maybe it may not be applicable, maybe 1 thing or 2. It talks about genetic testing, the importance of that.

Again, if you have even any doubt, you should try it, just go get a genetic test. You don’t really lose anything from that standpoint. Outreach in the community. The foundation does a good job, and I wish I knew about the foundation prior to it, so it’s funny that it came after the fact, but I’m glad it did. It just really kind of opened healing for me, I would say, in that standpoint.

When I started my therapy sessions with my therapist, I had a lot of pain. I was going through a divorce. The aortic dissection, Marfan syndrome caused these branches to just kind of go in a different direction. You blame yourself for a lot of things. My therapist said, “Why don’t you write a letter? Why don’t you kind of write your feelings and write your story on a Google Doc and whatever? It can be just cathartic for you.” I took a day, I was by myself, and I just started pounding away at the keyboard there, and I created my story.

I did that; my next session came, and then my therapist said, “Have you ever researched if there’s any organization dealing with Marfan?” I said, “I’ve not really researched that.” Then after my therapy appointment, I was staying with my uncle and aunt at the time in Tampa because I had to get away from South Florida. I said, “You know what, I’m working remote right now. I need to get away from my family and everything.” I stayed with them for 3 months at my aunt’s. I saw the website and I saw my story, and I saw that you could submit your story.

My aunt said to me, “Junior, why don’t you submit the story?” I just told her, “Nobody’s going to read that. Everybody has this foundation. Okay, yes, share your story. They probably get thousands of these. They’re not going to read my story.” She’s like, “You don’t got anything to lose. You send it and whatever. If nobody ever contacts you, at least you did it.” That’s something important in life. You want to try. You never want to just assume something’s not going to work out. You look at yourself in the mirror and at least you tried.

Lo and behold, the next day. I sent my story the next day. Eileen, that works at the Foundation, she reached out to me. Then we met, and then from there, that’s how I got connected with the foundation. Obviously, the story on Local 10 News came, and then just being a part of The Walk for Victories, and here in my local community, and then being part of the board now. I’m trying to give back in any different way I can. I think now that I’ve been blessed with kind of how life has changed and everything, and I feel like it’s my part. How can I give back in whatever way? I know my strengths, what they are. A lot of times, it’s just connecting with people. That’s kind of my greatest gift from that standpoint.

I’m not a scientist; I’m not a doctor that’s discovering these. But I am who I am, and I just love people. How can I connect with them and share my story? If that impacts somebody, then great. Being part of the Walk for Victories, a lot of people, they’ve seen my story. They come up to me, locally, and they’ll say, “Talk to me about that.” Then they’re just sharing like HIPAA doesn’t exist. It’s just everybody sharing their story. It’s great. We’re all talking because … I got exposed to that in the Walk for Victories, and then out when we went to a conference.

The Marfan Foundation has a global conference every year, different cities. The next one I believe is in Atlanta in 2025. People are just talking openly about this stuff and it kind of allowed me to say, “You know what, this is not a bad thing. Everybody is going through something and it’s okay. This is a safe space where I can connect with people who like me and we could talk about these things openly.” It’s really been a blessing, The Marfan Foundation, from that standpoint.

There’s no treatment. I just am proactive, so every 6 months, I have my cardiology appointment. Every 6 months, I see my ophthalmologist, making sure my eyes are good, behaving. Taking my medications, I’m on blood thinners because I have a titanium valve. That’s actually funny because the thing with this valve is you could hear it. It’s like a clock. I get nervous. The thing just starts, we’re talking, and she’s like, “What’s that clock sound?” I’m like, “Oh, yeah.”

Well, let me kind of explain everything to you. You know what’s going on here. I’ve gotten accustomed to it and it’s kind of funny. Sometimes I’m in my team meetings, and people say, “Oh, what’s that clock?” “Oh, it’s Joaquin.” It’s become a running joke, so it’s all good. Now I’m on warfarin, blood thinning medications. Obviously, I have to test my blood levels as part of kind of my ongoing proactive care here, just making sure I’m within the range that my cardiologist wants me to be at.

Prior to surgery, I was weighing 270 pounds. Post-surgery, I just started getting more active, a low sodium diet, and now I weight 210, basically what I was weighing in high school, when I was playing basketball in college, so it’s great that I got healthier post-surgery, so that’s the blessing. If I didn’t have Marfan syndrome, I probably would’ve had some type of blood pressure issues or things like that, so that’s been a blessing. I think the most important thing is it’s okay to ask for help. We all as human beings, we have ego. A lot of times, ego really prevents us from taking certain steps in life. We have ego because we don’t want to know that we have a certain health condition. But if we just were proactive, maybe it’s the difference between saving your life, or you’re in a very precarious situation.

I think that dropping your pride, not having that ego, and saying, “Okay, what resources that are out there that could benefit me, whether with Marfan syndrome or any connective tissue disorder?” You have The Marfan Foundation that is really just a big proponent of educating people. You easily go to the website and you have all those things. Okay, if an emergency happens, here’s your kit. Or your doctors in your area, that if you’re thinking you have a connective tissue disorder, they have that list or state there, and I think just creating that awareness, educating yourself, and really dropping your pride because it really will help a long way.

Live in the present moment, and I really conclude with that. A lot of times, we live life, we take life for granted. Everybody does, whether you had an aortic dissection, not an aortic dissection, whatever, we all take that for granted and living in the moment. I just think that’s really what you need to do from that standpoint.

This interview was made possible in partnership with The Marfan Foundation.