Rey Adam Rodriguez - phaware® interview 569

From Newlywed to Newly Diagnosed

Six months after saying “I do,” Rey Adam Rodriguez was told he had pulmonary arterial hypertension. Rey shares his whirlwind journey through misdiagnosis, a new baby, and finding hope through expert care and peer support.

My name is Rey Adam Rodriguez. I was diagnosed with pulmonary hypertension in 2022, 6 months after I just got married. The time of my diagnosis was a whirlwind for my family. I've always been a healthy young kid playing every sport, baseball, basketball, football, soccer growing up. A little after high school, I started running, noticing I couldn't really run as far as I used to. I thought, "Okay, I'm gaining weight." I pushed it off as cardio. I started working out a lot more, taking the pre-workout. One time with my wife, I went to work out and I felt a sharp pain in my chest. I went to the emergency room and they said I just had high blood pressure. One month before I got diagnosed, I was actually in Florida playing slow pitch softball. It was one of my hobbies that I do now.

I was running around, working fine, but the time I got diagnosed, I had just started a new job so I had to walk to a shuttle. I walked a few steps up and just got dizzy. I felt like I was about to black out. I got lucky. My wife, me and her, we drove in together, so I had to call her, tell her, "Hey, come on back. I don't feel so well." She looked at me and she saw I was pale, sweating. At first, we thought it was my blood pressure, because I was 26 on blood pressure medications. She said, "Okay, let's go take you to urgent care." From the medical center to our house was about 30 minutes. We drove all the way back towards our little area, urgent care. They took me back real quick and they said, "There's really nothing we can do with you. We suggest you go to the ER."

I went to the emergency room that we have in our little town. They rushed me back. They freaked me out, because after they did the EKG, they brought in a crash cart. They suggested I was having a heart attack. I was like, "What was going on?" A little backstory about us, when I say whirlwind of the month, my father-in-law had just went into the hospital and my wife just found out she was pregnant with our first son. My father-in-law was diagnosed with Stage 4 cancer. He beat it and got the surgery. A week after he came home, that's when I went into the hospital.

So, at this time, we're both freaking out. My wife was answering all the questions for me because I was just shocked. The first EKG was abnormal. The second EKG, they said, "Okay, you're fine, but something is going on." They did a CAT scan. They told me, "Hey, we're going to send you to a hospital down the street from us." I went to that hospital. I stayed in there for a week. I was passing every single test until the stress test.

When I did the stress test, by the third phase, when it started going up higher, I almost passed out in front of the doctor there. They rushed me to go get a heart cath. Again, I'm 20 something years old, I was freaking out. My wife was at work, she rushed back home. After that heart catheterization, they said, "Okay, you do have something called pulmonary arterial hypertension." We didn't know what it was. We looked at Google. Don't look at Google for this diagnosis, that's what I'd say. We were freaking out, but the doctor told us, "Hey, we already talked to a team in the Texas Medical Center in Houston. They have a team waiting for you. We're just waiting for a bed for you." Within that next day, I was in the medical center. I give Dr. Sandeep Sahay thanks for everything that I go through, because he came in so professionally. By 10:00 that next morning, he answered all our questions. He told me, "You're young, you'll do great with the medication. You caught it early. But if I'm worried, then you should be worried, and I'm not worried at all." That's what calmed me down after that.

I've been diagnosed for now three years. At that time, we looked at Google. Life expectancy for pulmonary arterial hypertension on Google was three to five years. Both of us freaked out. We were having a little one. My wife was really about to be a single mother in that short timeframe. I was thinking, can I do the normal activities I can do? Can I go work? Can I even lift anything? I liked to lift weights. Dr. Sahay came in and he told us, "Do not ever look at Google." He told me that from day one, to stay off of Google.

He told me, "Everything will be fine. There's new medication nowadays. If you stay on track, it will keep you going. You're healthy. Keep on losing the weight, keep on doing what you're doing." But one big thing is I could not work out. I don't work out, I just do it in other ways, walking, playing slow pitch softball. Thankfully, I still play. I test my limits sometimes, but I know my limits not to push, especially running-wise. Another thing, when my son was born, he told me, "Don't lift too heavy." I couldn't see my baby's eyes, I just had to lift them. I take my time. He knows that there's sometimes I can't run as fast as he can. He knows I'm easy with him. He still plays with me and everything.

My wife, at that time that I was diagnosed, like I said, her father was just diagnosed with Stage 4 cancer, renal cell. We didn't know if he'll make it either. At that time, she's thinking, "Am I going to lose both my father and my husband at the same time?" Thankfully, we're both still here and we're both still pushing.

How I face each day is different. There's days I wake up where I'm scared. There's days I wake up where I feel great. The days that I'm scared, for example, one time I went to go work out, I tested my limits trying to go on a StairMaster. I woke up, got dizzy, never went to that gym again. I’m never doing that StairMaster again.

I didn't know who to reach out to. I'm thankful for pulmonary arterial hypertension groups that are out there, because I reached out to people, they messaged me real quick saying, "Oh, yeah. This is this. You might think you have the regular body that you used to have, but you got to remember, you're going through something." That's what really helps me, because there's days I'm scared where I'm like, "Is this the time I have to go on another medication? Is this the time I have to go back to the hospital?" I worry about that because I'm missing my son's time. What helps me get through those days is to take a deep breath and seeing my son smile. Every single morning, he's either looking for me or his mother, and to us, that makes our day. I got to keep on fighting for him.

The days I feel real anxious, stressed out, I just sit back and take a moment for myself, take a deep breath and reflect. Even though I'm going through this, there's other people going through this and we're all going to get through it together one way or the other. Either support groups or just even talking to somebody that has it, that really helps me. Even though other people are going through it, they have the will to keep on going, that makes me have the will to keep on going. I listened to a person saying every day, they walk a few miles a day, they feel better. Okay, you know what? Let me go walk with my son just a few blocks a day. It makes me feel better. It shows that even though you're doing something alone, you're not really alone. If you need to reach out to somebody, someone in those support groups are going to be there for you.

There's times where I'll come home freaking out in the middle of the night. My wife, I love her to death, but she just doesn't know the feeling of, "Okay, we have this." There's days I'll go scanning through Facebook or the internet about this disease that I freaked myself out about. I just go look in the support groups I'm in on Facebook. Other people are going through this but they have the answers I'm looking for.

My biggest thing was can I reproduce after this if me and my wife wanted to have another child. My doctor said, yes, I could. I’ve seen on my groups, few men have had other children. I was so panicky about my son having it. We went through the doctors, and we did the genetic test and he doesn't. We were lucky. Seeing that everyone else can keep on continuing with their life shows me I can keep on continuing with my life. Don't hold back on anything. Don't miss out on little things. Right now, we're getting ready to go to Destin, Florida, me and my whole family. There's things that are like, "Ooh, should I really?" but I'm like, it's life. Keep on going. Keep on making your day a little bit happier than you are.

My wife, I say she's my rock. She's the strongest person I've known, because at the time of my diagnosis, her father had cancer. She pulled through where I would never think she would've. She held strong. She was there for me. Every time that I cried, the times in the hospital where I just did not know what was going on, that I felt that blank stare, what's next, she just held my hand and said, "We're going to get through this together. We're going to get through this together."

A year and a half ago, my mother found out she had cancer. The first person she asked for to be in there with her was my wife. Not me, not my brother, not my sister. It was my wife. My wife stood strong and she stood there right there by her, and even though my mom didn't want her telling me the stuff that was going on, she still told me. She told me, "Relax, it's going to be okay. We're in the right care team.”

In my defense, Houston Methodist is one of the greatest hospitals because they helped my father-in-law, my mother, and they're helping me, so we owe a lot to them. But yeah, my wife is my rock. She holds down the fort with my son. The days that I just come back and I'm like, "Okay, I'm tired. Give me five, 10 minutes." The days that I just need reassurance, she just tells me, "Okay, it's all going to be all right." In the beginning of our relationship, in 2016, I wasn't a church person. When I met my wife, I knew that, okay, I'm going to church. I believe in God. I changed my whole life around, from going out to playing all day to just staying at home and going to Sunday church.

Growing up, I hated going to doctors. I never wanted to go to the doctor. I always pushed everything aside. Before I was even diagnosed, I kind of pushed it to the side saying, "I'm going to be all right. It's my blood pressure. I already have medication." Just walking a few steps, that's when I started feeling dizzy. I said, "I'll go to the doctor in a month, I can push through it." I kept on going, "Okay, I got a few weeks before I go to my next doctor's appointment." I'm still feeling that little loss of breath. I seen stars until I finally told my body, "Okay, it's time to go to the doctor."

Doctor Sahay and his team at Methodist, once I got introduced with them, they're very hands-on. I got all my doctors through him. If I have a question, I message him. Within 24 hours, they're messaging me back. One of my first questions I remember, because I love going deer hunting, "Can I go deer hunting?" He said, within the next couple of hours, “Go deer hunting. Enjoy your life. Just remember, bring a pulse oximeter. Don't go too high." He told us the first day that he met us, "This is my card. You have a question at midnight, you call and text me. You have a question you want to put on MyChart, MyChart. My whole team's going to be there."

Anytime I have any little feeling wrong, I message him. Real quick, they message me. If I'm having digestive issues, I told him, I felt heartburn sometimes, "Hey, I got you appointment with a GI doctor," all ready for me. He said, "Everything comes through me. If another doctor wants to prescribe you medication, make sure they ask me first, because I want to make sure everything going in your body is right," so that's why I give him everything.

Every time I message him or see him, I just get happy, because I know he's a great guy. He asks about my son every single time. He asks about my wife. Anytime I go to a doctor's appointment without my wife, he's like, "Hey, call your wife. Put her on FaceTime so she can hear us." His support team was great too.

I always keep on pushing the limits to know my body and know what I can and cannot do, but at the end of the day, I want to make sure I'm here for my son. One of the things I told my wife when I was diagnosed was I want to beat this thing. Even though you can't technically beat it, I want to show that you can live with pulmonary arterial hypertension longer than the three to five years that Google says.

My name is Rey Adam Rodriguez, and I am aware that I am rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [e-mail] Like, Subscribe and Follow us: www.phawarepodcast.com.