Sophia Esteves - phaware® interview 548

Scars and Survival: Rebuilding Life After a Devastating Diagnosis

After countless hospital stays, new medications, and near-breaking points, Sophia Esteves found the reason she wanted to live—and it wasn’t just for herself. This episode dives into her spiritual and emotional transformation from patient to powerhouse advocate, and how she now helps others reclaim hope through honesty and grit.

My name is Sophia Esteves. I am living in San Antonio where I grew up. My connection to pulmonary arterial hypertension in the community is I'm a support group leader and I'm also a patient advocate. I was experiencing syncope. I had a couple episodes where I passed out, and the doctors were telling me, "I don't know what to tell you. I could keep you here all night, or I could let you go." The next week I passed out again, and I said, "Okay, we have to figure something else out here, because I can't get any more of these bruises on my head." I said, "Okay, some doctor has to notice something."

I went to every doctor you could imagine and then they finally said, "I'm going to send you to a doctor in Houston, because I think you might have this rare disease, and if you do, you might not have that long to live." It was that whole story that they tell you when you're on the cusp of being diagnosed. So of course, I went up to Houston, and I had a right heart catheterization. They said, "Yeah, you have pulmonary arterial hypertension. You have about four years to live, and you need to find someone to raise your daughter, and this is not a joke, and we need you to stop working because your job now is trying to stay alive." That was 22 years ago.

I was super ambitious. Well, I'd say I still am, but sometimes the fatigue gets the best of me. But at that time, I was working two jobs and going to school and trying to raise my daughter. I mean, I was like a functioning zombie. I was just determined to make things work for her and I. She was five at the time. AI justified all of my symptoms that I had, like, "Well, obviously I'm sleepy because I'm always at work, and I'm tired." Everything I experienced, the swelling of feet, maybe I need to elevate my feet more. My red hands and my red feet, maybe getting too much sun. I mean, I came up with the reason for everything, because I didn't want to slow down, really.

I was 21. Well, back then there were no pump options presented to me. The only thing I had was a calcium channel blocker and a blood thinner and high hopes. That was about it. At that time, fortunately, a study drug was presented to me. With much research, I determined that that was going to be the best option for me. That was the best route. There was a clinical trial. Actually, there were two side-by-side that were available. I looked for the one that, I guess, fit for me a little bit more in my life, because it was going to be held at a PH clinic which is three hours from my house. Sometimes when you're doing studies, they require you to be there quite often in the beginning. I just made sure it was something I could commit to.

I didn't really have that many other concerns except for maybe some side effects and things like that. It was the study that I ended up joining that became one of the best decisions that I made. It was like that whole fight or flight or sink or swim type of mentality for me, because you're telling me all of these heavy things about the direction of my life now, and the rest is going to be good decisions and high hopes, like I was saying earlier. I said, "Okay, I need to be really serious about this even though I'm young. If I want to be here long enough to see my daughter graduate, then I really need to make sure that this is my top priority."

The big old packet that they give you when you're about to join a clinical study, I went through every single page like if it was a research paper. I highlighted and I had questions. I've always been super thorough when it comes to my own personal health. I want answers. As long as you can give me those answers and let me know that if at any time I'm not happy with this study or maybe I'm not feeling so well and I want to come off of it, I want to know that am still in control and I still have the option to do that. And of course, the doctors were very good about saying, "Hey, look, this is something that you're trying. Even though you're committing to it, it's something that you're trying. And if it doesn't work at any time, you can come off of it." That was what made me decide to go forward with being on a trial, being on a study.

It was a commitment that I learned a lot from. I think I made three trips to Houston every week. So it was like Mondays, we would wake up at 5:00 AM and drive three hours, get to the clinic, take my pill, and then sit for a six-hour period in which I was watching VHS tapes, I think, if that takes you way back, these classic movies in the little office in my doctor's office. I was just tucked away. Then, I would go eat lunch and come back and take the next batch of my medicine. Then, that was done for the day.

I kept telling myself, "Sophia, this is the least that you could do for yourself, right? You want to live. You're just coming over here and watching movies. You've got this." With clinical trials, it just depends, are they double-blinded where the staff and the patient don't know what you're taking? You're just optimistic. That's kind of the study that I was on. Then, as you progress through it, you have less visits and you learn how to be a thorough patient for the success of the trial and, of course, your own personal journey. Coming off of that, it was just like, "Hey, I feel pretty good. If I'm supposed to be feeling something different, I don't." Then, I was like, "What else do you have for me? I'll take it. I'll try it." I was just so ready to use my body as this vessel to try anything that I could, because, of course, I had a great experience.

From that point on, then other medicines became available, IV therapy. I said, ""Okay, if this is what you think is best for me, let's do it." Then, that just became my whole objective with trying to treat myself and be an advocate for myself was, whatever you have, I'm going to try it. I learned that each individual on this planet is completely different. We all have different contributing factors that affect us overall, which means that any type of medicine you put in any person is going to probably have a slightly different effect. So I can't take it if it's a movie review where you said, "That movie sucks. Don't go watch it." I'm like, "No, I want to try it for myself. I might like it." So that's what I did. I tried oral therapy. I tried inhaled therapy. I tried intravenous therapy and subcutaneous therapy. Now, the injection therapy. I'm trying everything across the board to make sure that I'm being fair with myself.

It was something that was a big learning process. Every time you take a new medicine and you put it in your body, your body is going to have some sort of reaction, otherwise the medicine wouldn't be working. I had to learn what those were. So yes, my face might be red, and I might feel flushed, but guess what? That means the medicine's doing what it's supposed to do. It was kind of one of those things where I learned to treat the side effects from the medication as just a worst case scenario. That way, once I learned how to deal with those side effects, I could try to get back on track to have a more normal life. I knew that I loved working, going to school, taking care of my daughter, all of those things, and I wanted to continue them so bad.

I was like, "I'm going to do everything I can to get this under control enough so that I can have some sense of normalcy, whatever that looks like to me in that chapter." Of course, as any PH patient may experience that you go through a lot of hospital stays. Of the two decades, I feel like I've spent maybe half of that time in a hospital. I mean, I have scars all over my body that tell the most beautiful story of how I'm still here. I had to find a way in all that just to make it okay to continue doing those things, using my body in those ways, like, okay, take this medicine or heal from this scar and all that so that you can continue to have the other side of it, which is the time that you're not in the hospital because that's what makes it all worth it.

It was just this really beautiful balance that I was learning while I was taking all of these medicines. Another part of it was being realistic with myself. If my goal is to take this medicine and have a better quality of life, do I feel that? Do I feel like it's better, I'm better or worse? Without saying too much, I'll say that one of the treatments for me that I was on was just an absolute no-no. I did not enjoy that treatment, out of everyone that I've ever been on. It was the most painful thing for me, and I had to make a decision that I didn't want to be on that anymore. Fortunately, now we have this rainbow of different options that we can pick from. I went back to something else that I was more familiar with, and then it created the stability that I needed to get back to that more balanced life.

I believe personally, we all need purpose. Sometimes when you're faced with a diagnosis, like whatever you want to call it, chronic illness or a long-term disease or life-threatening illness, it kind of feels like everything you ever worked for, which is also your identity, your career, your education, your family life, all your social groups bundled into one is who you are. But then they go, "Hey, you can't do that anymore. You can't work. You can't be over there. You have to be over here." It's almost like you're searching again for a new identity. You are focusing on what you can do and what you can't. Once you do that, then you start identifying more of who you are in that phase, in that chapter.

As I was going through it, I will tell you, these very heavy moments... Because I'm an empath, so I feel everything so deep. I remember coming home one time from the hospital, and I had my arm outside of the passenger window. My dad was driving me back, and it was covered in bruises. I remember just crying, filtering it out. I said, "I don't know that I'm okay with this. Am I okay with this? Do I want to keep going through this?" Those were all the really truthful raw questions that would go through my mind every time I would look at myself. I would look at myself in the mirror as if I was someone else. I would say, "I just want to hold you. I just want to take away some of what you're feeling." It was all of those things I had to dissect and understand why, because of course I want to be here. But why? Then once I decided why, it's, "Okay, what are you going to do about it?"

When I finally decided, "Hey, yes, this is what I want to be doing. Yes, it's going to look like this sometime, but why? Why are you going to do this, and who are you doing it for?" I learned that every time I went into the hospital and I got a new scar, it wasn't for me, it was for someone else, because that story that I told someone else about that experience that I had shifted their life in some way. Maybe they needed to go on IV therapy, and they didn't want to live anymore, because they didn't want to go on IV therapy. Then, here I come into their hospital room and I'm telling them my last experience. "Look, this is why I'm here in the hospital. You can do this. It can look normal. It can get better." Then, all of a sudden this person calls me a week later and says, "Thank you for convincing me to get on this medicine. I'm alive and I'm with my family now." Things like that. So I understood that's my purpose. That's why I'm here. That's what makes it okay.

It's like waiting in a really long line. Yes, it sucks. Without the pretty words, it sure does suck sometimes, but not all the time. Then, I'm like, "I didn't wait in this line all this damn time just to get out of it. I am going to keep going forward, and when I get there, I am going to live it up and I'm going to do as much as I can, whatever that looks like." One thing I did notice going through this is that a question would pop up a lot in my mind. "Am I depressed or am I tired?"

I had to understand that my body just went through something enormous. Even though we normalize it because we have to, because it's a sense of survival, it doesn't mean that it's any less of a huge experience for our body. Our poor little bodies are delicate little flowers. We put them through all this stuff. We have to learn in that process to give ourselves that grace and to say, "Hey, it's okay to rest. It's okay if you sit at home all day and watch Netflix.” It doesn't mean you're depressed, because I guarantee, if you felt well, the minute you are feeling better, you get up off of the sofa and you run out into the sunshine, and you do all the things your little heart wants to do.

That clarification, every time I would get up from being tired and resting told me, "Hey, that wasn't depression, that was what resting looked like." Sometimes they can look similar. I just want to throw that out there, because I'm sure a lot of us go through this little questioning moment where we are wondering that. But again, it's just part of our recovery process. We hit the reset button and then we keep going.

I'm Sophia Esteves, and I'm aware that I'm rare.

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