Wendy Mercado - phaware® interview 592

A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her

Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop. After years of bouncing between doctors and medications, a PH specialist finally sat down, drew her heart on paper, and said the words Wendy needed to hear: We’re in this together. That moment didn’t just change her treatment plan, it changed her future.

My name is Wendy. I am from Long Island, New York. I was diagnosed in July of 2010, after my pregnancy with my twins. It was actually about four years later. I had preeclampsia with the twins. Prior to that, I had never had any issues with blood pressure or anything. I've always been overweight and during the pregnancy I had high blood pressure. The high blood pressure never went down. I was seeing a group practice for the time in between the birth of my children to the diagnosis. I was getting a different doctor every time. I started getting swelling of the legs and shortness of breath throughout that time. The response was, "You need to lose weight." It was just a constant changing of medication and/or dose of whatever medication they were giving me at the time for my high blood pressure, but nothing really seemed to work, until the nurse practitioner of the group finally said to me, "Have you seen the cardiologist yet?" I look back at that time and I think, wow, I was really dumb, kind of ignorant. How did I not think to ask for that?

But I was a mom now of three kids and a full-time teacher and a wife and a daughter and all the titles. I hadn't thought of that. I always put my health last up until that point. So, I saw the cardiologist and he said, "You need a right heart catheterization immediately." He didn't really give me much information. He attempted to do a stress test and that was a mess. I didn't do well with that with the shortness of breath and everything else. I had my right heart catheterization pretty soon after that appointment. The cardiologist that did the right heart cath came in and told me that I had severe pulmonary arterial hypertension. He just looked at me and said, "If you were my family member, I would recommend that you see this pulmonologist." He gave me a name, that started this whole journey of trying to find out why.

I make the joke that pulmonologist sent me to all the other-ologists and he sent me around the block and everywhere else to try to figure out why I had this pulmonary hypertension. He looked at me and he said, "Well, you are overweight, you need to lose weight. But you can't do exercise because that'll put too much strain on your heart and you could die." I've always been one of those people that tell me I can't do something and I want to do it now. My husband had just bought the girls Nintendo Wii. I started doing Zumba at home, little by little. I also looked at my children and I had done the Googling, which is always the biggest mistake. I said, "Oh my gosh, I need to be here for my kids.” I needed to make some changes in my lifestyle, too, with the help of the doctor and medications.

Slowly but surely, I was exercising and changing lifestyle. I was able to lose weight but that didn't change the pulmonary hypertension. It became a lot of trial and error with the medications. I remember being in recovery after one right heart cath and my husband who also has some cardiac issues, he's got AFib, his doctor saw me in the recovery room. He's said, "What are you doing here?" I started telling him my story and he said, "You really should be seeing a specialist. I don't want to say anything negative about my colleagues but I think you need to see a specialist. If I were you, I'd go into the city. And here is who I think you should see." He gave me a name and I said, "Oh yeah. Okay, I will." But I put it in the back of my mind, because I just was like, that is something else to add to my plate at the time.

I went to the follow-up for that right heart cath with my pulmonologist and he said, "I think I need to send you to the city to see a specialist." He gave me a name and it happened to be the same name, and so that landed me in the office of Dr. Erika Berman. I always tell her that her and her team saved my life. She sat with me and she was like, "Well, do you know exactly what pulmonary hypertension is? Let me just sit with you."

I just remember that first appointment vividly and she actually sat there and she drew a heart for me and she showed me visually, "This is what's going on with your body and this is what we need to do." She took a lot of time to just sit and listen to me and my lifestyle and about my family. She asked me what my goals were. I just said, "Oh, I just want to see my kids graduate. I want to be here." She said, "And you will be. We're going to make it happen. Are you ready to be aggressive?" I said, "Absolutely, let's do this." She and her nurse, Daniella, became my partners in all of this, in addition to my family and my support system. We tried a lot and we did clinical trials and I've tried almost all of the medications at some point or another that are out there right now. Some things worked and then they wouldn't.

I remember at one point I said, "The only thing I don't want, I don't want to be on some sort of pump. I don't want to have my life tethered to a pump. I don't want my life to stop me." I remember the day that it was like, "This is where we're at. We really don't have a choice." I started the therapy with the line in my chest and that was a struggle to get used to, but I started to feel so much better and it really helped me a lot. Through all of this, I became a Zumba instructor and I was doing all of these things and I was dancing. I was just like, "I just want to be a good role model for my kids. I want them to see we're going to eat healthy and we're going to make healthy choices. And this isn't going to stop me, I'm going to continue living my life." That's what I did until my body started rejecting the lines. That was really hard because it was like, "Oh, I want to be off this pump. This is what I want." But I was afraid of what was going to happen to my health.

In essence, what I was afraid of did happen. We had no choice. We changed the lines so many times and I developed skin allergies to the adhesives. It was just a lot in the four years. Finally, my doctor said, "We can't do this anymore." I had the line taken out, I want to say it was January 2021. I was low again with my functioning and being short of breath again and all of that and having to climb back up from that and finding the right cocktail, the right mix of treatments. Fast-forward to now, I have a really good mix going. We have a great therapy system working out for me, a couple of different pathways. I'm feeling really good and my pressures are lower than they've been ever since I was diagnosed. I'm just in a good place, so I'm really thankful for that.

Mentally, it was a range of things because when I was first diagnosed, all I heard was... Even though they said pulmonary arterial hypertension, for me, all I heard was hypertension. I was like, "Oh, there's going to be medication for that. It's fine." As I started seeing the pulmonologist and he was sending me to all these doctors, it was like living in blissful ignorance almost. I didn't want to know. I was just like, "Okay, I'm just going through the motions." Then, finally I sat down and I was like, "I need to see what this is." That's when I Googled and I was like, "Okay, now I'm scared." Because we know now that the information on Google is old and it's outdated and it doesn't apply to everybody.

I think that's one of the biggest things that I've learned in this whole journey is just everybody is different. What can work for Jane is great for her and it's not going to work for me. What works for me is wonderful and it's not going to work for Sue or anybody else. That was the hardest thing for me, "Why aren't these treatments working?" Once I met with my specialist and she did sit down and draw it out, the one thing that she did for me that was great was she made it clear that we were in this together and we were a team and we were going to make this work. She was clear on what I wanted and what I was willing to do, which at that point was any and everything.

I want to be here for my kids. That's my goal. Whatever it takes, whatever we need to do, I'm for it. She was like, "We're here for you and we're going to make this work." I really don't know that I would be where I am physically and also emotionally, because this takes such a toll. I would not be doing as well if it were not for that team. Just the fact that she was just like, "I'm clear on what you want and I'm going to help you get there." She makes that clear every time we talk. I'm very thankful for that.

I did reach out to my local support group. At that point, I was in a really good place and I decided that I was going to do this big Zumba fundraiser to raise money. I went into this meeting super gung-ho, ready to meet other people, and super excited about the prospect of putting together this fundraiser at my school, raising awareness. I was just really excited about it. Like I said, I've learned that everybody is really different and I know that I'm very lucky. I'm extremely lucky to be where I am and doing the things that I'm doing, especially this many years past my diagnosis. The people in that room, there were a variety of people. There were people that were on SubQ and looking great. There were people that had their oxygen with them and everything in between. When it came time to introduce myself and to talk about my story and what I was excited about, it wasn't received well. Actually, one person said to me, "I feel bitter that you can do this and I can't." It turned me off and I didn't go back.

I did join some groups on Facebook. I remember there was this one person in particular, she friended me. I was like, "Yeah, of course. I'm going to accept these friends and I'm going to get to know other people that are in my similar situation and understand me in this situation that I'm in and this journey that I'm on." I would post a lot about just being excited about Zumba, silly things. I just remember her posting a lot like, "You need to be careful. This is not good for your heart." It was just a lot of really negative comments. I didn't feel that support.

Now, prior to COVID, I was invited for a while to participate as a peer mentor. I was given this awesome opportunity to go talk to people in other states in person. Those experiences were phenomenal. I wish I had this closer to home. I was given an opportunity to go and share my story and meet other people and their caretakers. That, for me, was super special. But in terms of finding a local support group or a local group, it has jaded me a little bit. I will comment on some things in some of the groups on Facebook, but I'm also very careful about what I write because I get it, when I was down...because I always say, my journey has been like a rollercoaster, there have been some great ups and there have been some really low downs. If it wasn't for the support group that I have, it would've been really hard. This takes such a toll on you in every way possible. I'm careful about what I write in those groups, because I don't want to upset anybody. But also, I remember reading about one woman who was a runner and she ran marathons and she had PH. Running is not for me, don't get me wrong, but I want to be able to be like that too. For me, that was an inspiration and that was what I was hoping for. It was a letdown to not have a positive experience locally.

The one really great thing about my doctor is that she was just like, "I'm going to make sure that you can do what you want, but we need to have a very clear and open communication." She said, "One of the things I really need you to do is I need you to start paying attention to your body, and I need you to prioritize your health." She said, "I need you to stop and self-assess. If you're feeling short of breath, maybe stop." It was like a training for me almost, because it really did force me to put myself first for the first time, I think ever. It was like, "Now, I need to really listen to my body and really pay attention."

I remember journaling a lot like, "Okay, I took this class today. This is how I felt after." Then, when I got my Apple Watch, it was constantly checking, "Okay, what was my heart rate like and how did I feel at that moment?" There was a lot of just paying attention to me and really just... I don't want to say listening to myself, just really processing how did I feel in that moment. I am careful. I'm not going to push myself too hard.

I'm also lucky in the place that I work out and that I exercise in, it's a small business and we've created a community inside the walls of that studio. I'm very open with them and they're the ones that support me whenever I do fundraisers and things, so they know. They're always there for me and every now and then I'll get a in between songs, "Are you feeling okay? You look a little pale." Or, "I saw you struggling for breath. Are you all right?" It's just like, "No, no, no, I'm good." Or I'll take a time out and they're okay with that. It really has become just really a training of me paying attention to myself and knowing that if I push myself, it is going to be a problem. So, I'm not going to do that. I'm not going to push myself too hard.

That really came with talking to my doctor and my nurse a lot, really just having them tell me like, "Okay, we're going to trust you, but you really do need to pay attention to how you're feeling." Between those conversations and also just exercise tests in the office where I can get pushed a little bit more because I am medically a supervisor, however you want to term that. So, they did see, "Okay, she has progressed and she can do these things." It was a lot of that.

When I was on the pump, I remember getting my box of supplies. I remember one of my twins coming in and was like, "Mom, I'm going to help you." I would sit there every month making my little baggies of all the things that you would need for the day. I would just pull out a Ziploc bag every day. I just remember her saying, "I've watched you do this. I'm going to help you do this today." Whenever I've done something new or I've had to have a nurse come to the house, they're all here. I've made sure of that. It was important to me that they know everything. I never wanted them to feel like we don't know what's going on with mom.

On a personal note, my mom, she's still alive and... Thank God. But she's got health issues and she won't share those with me and that infuriates me. A couple of years ago she landed in the hospital, a little bit of a scare. I couldn’t answer any of the questions, because I don't know things. So, I was like, "I'm not going to have that kind of relationship with my kids. They're going to know things." They come with me to the doctor. It's so funny, my nurse, she and I will chat about whatever it is that we need to chat about, and then we start talking about our kids because now we've been together so long and she's met all of my girls. She knows, actually, my oldest is now a respiratory therapist. A lot of it is, "I want to be like Daniella." Now, she thinks she might go back and become a registered nurse so that she can become a nurse practitioner someday and specialize in pulmonary care like my nurse.

When I first got the line and I was in the hospital, the CVS nurse came home with me and we had dinner first. I was like, "Wait, before we even do anything, let's sit down and have dinner." Then, okay, with the nurse, I said, "We're all going to have dinner together." He sat down and he was like, "Okay. Well, everybody is going to learn on how to keep mom clean and what mom needs." I'm so blessed to just have the support system in my house but also within my friends and my family, my community.

My family, they come with me to the doctor. They're doing all the things. I just had actually a genetics appointment, because we want to know if I have the type that's genetic and the girls are all very interested. My oldest came with me, she had her own questions. I feel like that's the only way I got through this. If I didn't have that support, I couldn't imagine going through this and not telling my kids about it. But I also wanted them to know mom has this and yeah, it's really scary. It can be scary and it's very serious, but it doesn't define who I am. It's not going to stop me from my goals and what I do. I'm very lucky in a lot of ways and I couldn't do it without that.

I think the best advice I can give to anybody is to, number one, get a specialist. Without fail, you need to see a PH specialist. It's a hike, she's not around the corner for me. Recently, my doctor moved to a hospital, I call it upstate, people don't call Westchester upstate, but I say that's upstate. I followed her because I wouldn't be here without her. For me, it's really important to, number one, get a specialist.

Number two, have that open communication. It's just important, I think. Also, educate yourself. I'm always looking at what's new, what's the latest and greatest out there. Thankfully, things are developing. It's slow, but new things do come out to the market and things have changed from when I was first diagnosed to now. One of my present therapies is something that's very new, I'm very lucky in that way.

I also put myself out there for any kind of clinical trials or any kind of research opportunity. Anything that I can do to help the next generation. Or even if my kids were to someday be diagnosed, I want them to have the best. Anything that I can do to help the future is important.

Thank you for listening. My name is Wendy Mercado, and I'm aware that I'm rare.

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