Jolie Lizana - phaware® interview 507

Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, www.breathtakingawareness.com, and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources.

My name is Jolie Lizana. I am in Slidell, Louisiana, and I have been diagnosed with PH since 2013. I went six years from doctor to doctor to doctor to doctor trying to find out what was wrong with me, and they gave me every diagnosis under the sun. But even before I was bouncing from doctor to doctor, as a child, I remember, "Why can't I run that well, I don't get it. I don't have the breath." I always played sports. I was very active, but just for some reason I didn't feel like I was breathing as well as everyone else was. In my late 20s, early 30s, I actually started running because I knew that I wanted to have a child one day, and I knew something was wrong. I finally got up to four miles a day. I was just so excited to have this be something that I shared with my child. What a wonderful moment to share. What a wonderful thing to give to a child. That would be something they would love. So I thought it was just such a great thing to do and it saved my life.

By the time my diagnosis came, I was really bad off. I think a few weeks before I had left the ER and the doctor told me, "I don't know what to tell you. Everything's fine," said I'm fine, "Everything's fine." And I'm just looking at her like, "Okay, I'm leaving this hospital cause nobody's helping me, and I think I'm going to die." At the time, I had a five-year-old son. I was working as a sonographer, so I would have to push patients sometimes or the machine, and I would have to stop mid-hallway or mid whatever and pretend to be reading over their chart so that I could catch my breath. I didn't want anyone to know that I was about to pass out all the time. I would lose my job. Nobody was helping me anyway to try to find out what was wrong with me. I had an appointment to see my regular doctor. I was supposed to go to work afterwards, but I went to see him, and he's like, "I don't know, Jolie. Everything seems to be fine. All your blood work is incredible. You're in great health. I don't understand."

And he's like, "But you don't look nervous. You don't look anxious." I'm like, "Just let me walk up and down this hall. Take my vitals. Let me walk up and down the hall, and I'll let you know when I'm ready." And he's like, "Well, okay." So finally, somebody did it. It took me all of maybe three or four minutes and I went back in. He's like, "Oh, my gosh, are you okay?" And I'm just shaking my head, "Yeah," because I'm used to it. I'm trying to catch my breath. They took my pulse and everything, and they're like, "Okay, you need to go straight to the hospital right now, Jolie. Something's wrong with your heart and there's been something wrong for a long time." All this happens. I end up going to get an EKG where they tell me, "Ohm goodness, this says you have heart failure. This machine's messing up. Let me try it again. Oh, goodness, it looks like you have heart failure. Hold on just a minute."

And she comes back, "Okay, the doctor signed off on it. You're fine. I told him that you look so healthy. There's nothing wrong. This machine's messing up." I'm laid there wanting to choke her, just not saying anything. I'm like, "Just get me out of here," and they did the echo. And next thing I know, some students and them are over there clamoring about my results. Like I said, I did sonography, but I did every part of the body except for the heart. That's a whole other beast of its own, and I don't know what's going on over there, but I know it's not good. And I'm looking, I'm like, "Okay." And they're like, "Oh, you could go." So I leave and I'm barely able to make it to the car. And this is on Friday. Come Sunday, I couldn't even sit up to breathe. I had to lay down and my aunt screaming at me, "You're going to the hospital, Jolie. You're going, you're going." I'm like, "Take me to this particular hospital because they are good with hearts. Let's go there."

By the time I got there to get the diagnosis, I had right-sided heart failure, diastolic, systolic heart failure, a BMP of 467, a blood clot in each lung and PH pressures over 125. I don't remember exactly what it was, but it was extremely high. And I was in the hospital that year altogether for eight months. I was put on IV Remodulin. I was not expected to make it through the week, through the month, through the year, through the, here I am on year 11. And I credit me being alive to having ran before all this hit me to get my lungs healthy and to having that child to give me all the strength and energy I need to know that life is worth living. And just to I think having a medical background understanding completely as soon as they tell me what's happening, although I had never heard of PH before, clearly, as soon as they tell me what's happening, I get it. I understand it.

Wrapping my head around still now, "Okay, I've lost my identity. I'm disabled, I this, I that, whatever. Who am I now? This is just crazy." I lost everything I had. So that was the hard part, having to admit, "Okay, this is what it is. You can't change this." I had more than one doctor tell me, "You can't push through this, Jolie." When the doctor says, "This is very serious, Jolie. Something's wrong with your heart." And from there, that's how my diagnosis just came about, being very pushy. I do believe that I had issues all my life with PH. I talked to my coaches and running, why couldn't I keep going for as far as fast? It wasn't my muscles, it was my breathing. So what was wrong? And I remember doing that several times. So I had this already, but yes, whenever I had a child, everything inside just gets pushed, and it's really pushed and it makes everything extremely hard. I couldn't run anymore while I was pregnant because I was having a lot of pain, I would keel over.

Although I think I am pretty sure I had this all of my life from things that have happened, I definitely think having a child, expanding everything, pushing on it, I do believe that that kicked it into high gear. Having the diagnosis after everything I went through trying to figure out what was wrong was absolutely not a relief at all. Other people said that, "Wasn't a relief to know." No, absolutely not. Perhaps it was the way that I found out. I literally couldn't sit up to breathe, so I almost died. So it might've been a relief if the situation were different, but for me particularly, it was not a relief. It was a mixture of being pissed off because I told these people countless times, "I can't breathe. I can't walk. Something's wrong with me." No one took me seriously, and so it was anger. And then there was also this resentment within myself like, "Why didn't I push harder?"

But really, I don't know what more you can do if no one's really listening to you. I think that being in the medical field helped me in the long run, but initially it didn't. Initially, it was, "Okay, I'm going to find out how I can fix myself. I'm going to find out what gave me this, what caused it." And I had my medical records. 3:00 in the morning, I'm surrounded by papers that I'm reading and looking stuff up online. And my doctor comes in, he's like, Jolie, you have to rest. Your body has to rest. Please stop looking at this stuff and let me do my job." It's the hardest thing to say, "Okay, I trust you. After six years of not being diagnosed, how do I suddenly trust this doctor?" And so I didn't necessarily just drop everything and stop looking. But when I was diagnosed, it was rough. I was trying to find out the cause, what was going on, and my head was just spinning all the time.

Even though I knew that, well, I probably had this all along, it was still this, "No, no, no, no. Something had to have caused this." You just search and search for an answer, something that can fix it, not what they're telling me I have to do. There's got to be another way. There's got to. I can get through this. And so it was a lot of digging and a lot of just messiness; not sleeping well, staying up all night in the hospital. They'd give me medicine to make me sleep because my anxiety was just so bad. It was rough. But as soon as I finally calmed down with all that, the medicine started helping. During the first year, it was just about making it through the day. There were many, many nights I didn't think I was going to wake up. A little over a year in, I hadn't stayed in the hospital. I didn't go for an entire month. That's the longest time I had been out. And I'm like, "That's it. I'm getting better. We're going to celebrate.

There was a fair, the world's largest free fair is right where we lived at the time in Franklinton, Louisiana. So I'm like, "We're going to go to the fair." And then it just hit me, "You know what? Let's not just go to the fair. Let's get a booth at the fair. Let's give out information about this to anyone and everyone that'll take it." So that's what happened. My sister helped me and we made business cards, got stuff from PHA and all these different places to give information out to anybody and everybody that would listen. I was out there with my IV pump sitting on a stool. I couldn't stand much, but I was there stopping anybody that I could on the way through. It was really great. I started having some family give me things like a guitar to a raffle off and various other things and so we did an awareness event. I know some people in a band and some people that are DJs, so we had light and sound and all this stuff, and it was great.

It was the first awareness event. I had to set up a website for that because we were selling T-shirts for the walk. And then it was like, "Well, I guess I'll do a Facebook page." And so then it just grew into more. And this website I did. I started doing a blog on it, and I wrote anything I could think of that helped me. What helps you take a shower? What helps you go grocery shopping? What helps you do your laundry? Just anything I was writing down and it was helping me and hopefully helping others. I don't know if they even knew about it. I was doing it. I figured if it helps one person, then it's all worth it. So it started out like that, and suddenly, I don't know how, but I was approached by a couple of people to do various panels. It was just about a little over a year ago where I saw the thing with Johnson a& Johnson's where they have all these advocates go to Healthy Voices. They pick about 100 advocates a year. It's mostly nationally, but it's also internationally.

I'm like, you know what? "Deadline's tomorrow, whatever. I'm going to send something in." So I just typed up something, "This is who I am," and whatever. I didn't think for a second that I get chosen, but I did. And I'm like, "Whoa, wait." And I'm looking at all these people that are going to be there, and I'm like, "These guys are real advocates. I'm just some person." Well, it took me going there to realize that, "Hello, you've been advocating for 10 years, Jolie." It's like it didn't even sink in what all I was doing. I was making T-shirts, just all these various things, but I never considered myself to be an advocate. So after going there and learning how to be a better advocate, which I definitely think is an ongoing process. But learning how to be a better advocate really just kind of sparked a whole new thing. So now I'm like, yeah, I'm all in.

As an advocate, it's important not to only help others, but it's also nice to have a way to get out to express yourself with everything that's going on to people that understand and can relate and possibly really need to hear it. So the website that I have is www.breathtakingawareness.com. On there, there's information for people newly diagnosed and beyond that. There's more information to go to. Whenever I was first diagnosed, it was completely overwhelming. All these websites had so much information. I stagger it out a bit, and I also have a blog there and new information that pops out about medications, that sort of thing. And Facebook page, it is also breathtakingawareness and it has my name, Jolie Lizana, attached to that. And the Instagram I have up, that is the same as well, breathtakingawareness. Having PH for a lot of people means finding a new identity. You lose some of your old identity, which is very difficult to deal with. So what do you do? Where do you go from there?

I had to find things that I can do, things that maybe I would enjoy and I've done various art things; resin, paints, acrylics, never oils. Everything is pretty safe. I've redone furniture, at some points, make jewelry. I have a ton of things that I do, and I stay learning just anything to do with art. My favorite is painting. I spend a good bit of time painting. It's almost like my meditation, it's takes me out away from everything else, and it is an extremely powerful outlet. Whereas years ago, I used to run and that was my outlet. To find a new outlet, it took me a really long time, but it's extremely important. Being an advocate has given me opportunities to do a lot of things, and I was in EMS. I did that basically to get into school for sonography. It was just a bonus I hoped to get into school. But having that background, the medical background, I was invited to a round table event at the EMS Expo in New Orleans. I sat with paramedics, lawmakers, PH nurses. It was quite incredible.

We wrote the first-ever pulmonary arterial hypertension protocols for EMS, and it's just passe Senate right now, and it's going to Congress. It went through House, through Senate. They're going to teach EMS protocols for all these rare diseases so that they can give patients the medication that they have on them. They can't do that right now. You have to wait until you get to the hospital so they can assist with patients' medication and just various things for PHers. And so I'm really, really excited to have that all come out. It's supposed to be 2.1 million every year, extended education for EMS. I'm very excited about that. When you're first diagnosed with PH, it's a lot. You really don't know what to expect, just sticking in there and doing what you can to find the new you and being just adamant about not giving up on yourself and not giving up on having a life. It may not be the life I chose for my trajectory, as I always say, just went straight off the cliff. But it doesn't mean that I have to just stay there.

I can decide what I do with my life. And starting advocacy is something that fulfills me in so many ways, and it's definitely something I'm going to keep doing. I was completely overwhelmed, but now I am quite knowledgeable and just see myself sharing as much as I can with whomever I can. What gives me a lot of strength right now and hope for the future is knowing that I'm going to be helping people. It's not that I might, it's that I'm going to be a force and do all I can to help others. And in many ways, actually, as far as advocacy goes, I'm about to start advocating for a few more things because as advocates, we learned to be vulnerable, and I have a lot to share. So I'm just really looking forward to it. And I couldn't imagine finding someone whenever I was first diagnosed that could just pull me through this and say, "This is what happened, and this is the story, and you're going to be okay, because there's definitely hope."

My name is Jolie Lizana, and I am aware that I'm rare.

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