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Nicole Fitzgerald - phaware® interview 555
Wednesday, 14 January, 2026
One Teacher's Unexpected Battle with a Silent Killer Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move—until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose. My name is Nicole Fitzgerald. I am 43 years old. I'm originally from Los Angeles, but I now live in Oklahoma City. I was diagnosed in February of 2018. It was kind of a bizarre road to diagnosis. At the time, we were living in Southern California and I was working as a special education care professional, so I was in a second, third grade elementary class. If you've ever been around kids, it's very busy all the time. It's like controlled chaos. My husband got an opportunity to take a job in Oklahoma City. That's what brought us here. We were in the process of moving and buying a house. The symptoms had probably been there for a very long time, but it just took me a while to recognize it. So, much of the shortness of breath and fatigue, I really attributed to being out of shape, overweight, stressed out because we were moving and packing and doing so many other things. I remember feeling short of breath, just walking from the school parking lot, which isn't very big. It's an elementary school, but walking from there into the school office, I had to take a break just to stop in the office, catch my breath. Then, of course, my classroom is at the very back of the campus. So walking from the office to the back of the campus, I would need another break just to again, just catch my breath and get ready to go back into work. All of these things I had noticed were increasingly getting worse, but I attributed it to, at the time, being on a high blood pressure medication that just wasn't agreeing with me. I had been feeling all these terrible symptoms and I was getting swelling in my lower legs. Finally, I told my husband. At this point we had moved out of our home. We were staying with my parents, which was supposed to be just a couple of weeks until we literally were moving to Oklahoma. What turned from just a couple of weeks stay ended up being about another six weeks or so. So I appreciate them for taking us in for as long as they did. It was really a thing where going up the stairs in my parents' house, I just felt so faint and tired and exhausted. I told my husband, "I have to go to urgent care if I feel really bad tomorrow." I went thinking that they were going to tell me, "Oh, your blood pressure medication, obviously let's change that." As soon as I went in, they did an EKG and they noticed something was not right. They thought I was having a heart attack. That was pretty scary at the time. They rushed me to hospital and did all these tests. I wasn't really satisfied with some of the care that I was getting at that particular hospital. So we went to another hospital that was better and we thought would be better for heart issues. So I went to this other hospital and as soon as I went in emergency, they just took me right away. They noticed my oxygen saturation was very low and obviously there was something going on with my heart. I was there for what I thought was going to be hopefully not a huge deal, and I ended up staying for a week. During that week, they obviously did a whole battery of tests. Pretty quickly, they did an ultrasound on my heart and they noticed that the right side of my heart was enlarged. Obviously, that was an issue. Once they did the right heart catheterization, they noticed that my pressures were really high. At the time it was 93. It was very high. I still had no idea what any of this even meant. I could tell that things were very serious, but I didn't know what it meant. I didn't understand what kind of serious. They finally came in after the heart cath and told me that I had pulmonary hypertension. You hear hypertension and you're thinking blood pressure. I just was thinking this is similar to regular blood pressure and I had no idea that it was obviously something more serious. I found out pretty quickly just by the look on the doctor's faces that things were a lot more serious. It was a pretty grim time. I remember at the time them telling me that maybe I'd have two to five years to live. It was super scary. Me and my husband hadn't been married for that long and here we're planning this big move and we're thinking of all these big future goals. Then all of that just gets stopped in its tracks. It was a terrifying time. I think through it all, I was kind of still in a bit of a state of shock or disbelief. I remember asking pretty quickly, this was a Monday when I had initially went into urgent care and obviously I didn't go into work. By the time all these tests and things were being done, I'm at work and my first questions was like, "Well, when can I go back to work?" I remember them looking at me and laughing like, "That should not be at the top of your list right now. Everything you had thought you were going to be doing, you need to stop for a second and just take care of the matters at hand." It was a stressful time. I pretty quickly learned how serious all of it was. When they released me, I was able to go to a specialist, I want to say that next day, they were able to get me in to see someone. I think that was a real eye-opener because I realized then the people that I was speaking to in the hospital, I don't think they were as educated on pulmonary hypertension as obviously the specialist was. We were able to ask a lot more questions. He gave us a lot more specific and I think realistic expectations in terms of my prognosis. Like sure, they're going to say two to five, but that's if you not getting treated with anything. I think we were kind of reassured that there were things that I could do, there were treatments that I could take so we can kind of get back onto a path of me getting better. I think that was a big help talking to someone who actually knew what pulmonary hypertension was. At the same time, it's a little daunting because having pulmonary hypertension, it's not like (I don't want to compare it to cancer or things like that), but if you are diagnosed with cancer, it's very grim. But you know someone that's had cancer, you can talk to people that have had cancer that have beat it, these type of things. When you're diagnosed with pulmonary hypertension, I had never heard of it. There's no family history of that. It's not like you can talk to someone else about it. I really had no idea what the disease was like, what any of these treatments were, what was going to be in store for me. It took a while. That first year in particular was probably the hardest, because I was on enough medication at the time to get me stable just to move. Then after we moved, then it was, "Okay, well now we've got to get you on medications to actually get you better, to try to get you better." But again, moving introduces a whole new host of issues, because I didn't have a specialist here in Oklahoma. I didn't have any doctors here in Oklahoma. I didn't have any family support or friends or anything. It was kind of a big leap into the unknown and kind of hoping that things would turn out OK. I've been very, very fortunate here to end up with a really great care team, and it was all kind of by accident too. I am so, so grateful to have landed with some really fantastic nurses and doctors and all of those things that have worked out pretty well. But it was a scary time for a while. I probably got worse before I got better. But once I did, it's obviously been a progression of getting stable and you kind of appreciate just being stable more than anything now. Having bad, bad days before where you can't leave the house and you're more or less bedbound and on oxygen and all these other things to now being able to just do normal things. You just realize how much you appreciate just simple, simple things. Walking outside in a hot day and not feeling like I'm going to die. It's a relief. Feeling like I can breathe, it's really a wonderful relief to just be normal for a while. When we left California, they told me that, "Your best bet would be to link up with a physician in the university system." There's really fantastic doctors in Southern California, so if I had stayed there, I would've tried to get in somewhere like UCLA or possibly San Diego or whatever. But moving, they didn't really have any connections to Oklahoma, so it's not like they said, "Hey, we know this great doctor in Oklahoma, make sure you call them." It was really just, "If I were you, I would try to link up with the doctor in the university system and see where you can get in." Because I had been so newly diagnosed, there was a whole host of tests that I still needed to have done. The whole screening to see if I had this because of underlying autoimmune issues hadn't even been done. One of the first things they said also was, "You need to go see a rheumatologist and have all these tests done." Initially, they thought that I could have had blood clots, so that was another thing. "You need to go see a hematologist and make sure you're linking up with all these doctors and whatnot." I had an appointment to see a pulmonologist and all these other tests kind of in between with these other physicians. I had seen the hematologist out here and he was really wonderful. He was the first one actually, "Oh, I see that you're supposed to see such and such doctor. Have you heard of this doctor?" He mentioned my specialist at the time, well now. He's the one that recommended him to me. He said, "Yeah, he hasn't been out here long. He's from Ohio, but he's really great. He's a specialist in this and I think that you would really benefit from seeing him." It was at a completely different hospital system than where I had anticipated going. I was lucky enough to be able to make an appointment. He's been my specialist since, and he is fantastic. I'm so, so grateful for him and his team. They've been wonderful. He's at the forefront of trying to advocate for all of us patients here and just kind of make the center here bigger. He's done a whole lot and I'm really grateful for all that he's doing for his patients here. I had no knowledge of PH at all. I really was kind of learning as I went. There was so much that I still needed to learn. I'm not really a fan of the term, "the new normal," but it is true in the sense that there's so much that you're learning. It's really a completely different world that you're trying to navigate that you don't see if you're not someone that has a chronic illness. Specialty pharmacies. I had no idea that that was even a thing where you needed to make calls and get medication from a special pharmacy that only deals with this. All the back and forth with insurance and all those things, all of that was so new. I think it might've been a specialty pharmacy nurse who suggested all these Facebook PH support groups. For whatever reason, that just had never even dawned on me that there were PH support groups. When I started looking, I was lucky enough to be able to get into a PH support group and then here, there are all these patients with a whole host of information. You can ask them questions and just all of these other things. Once I was finally introduced to the fact that there are at least online support groups, that was a huge revelation to me. Through that, my physician who as a specialist had mentioned that he was going to be doing a seminar in Tulsa, which is from where I'm located, about an hour and 40 minutes or so drive. I thought, well, that's perfect, because I can go and kind of get more information. At the time that he was doing this conference, my parents were going to be here in town and I thought, oh, this is perfect. They can come and learn more about it. We all drove up there. It was really great. It was fantastic because they happened to be here and they got to meet him and hear more about exactly what the disease is. It was educating us. I got to meet other patients in person and have this conversation with them. Everybody kind of swaps their stories of how they were diagnosed and what kind of things they're on and all that stuff. It was really helpful for me who was so new to not only this disease, but Oklahoma in general, the whole community here. It was just so nice to meet other people that have what I have and you can just relate in a different way than you can with people that don't have it. Not that I haven't made friends obviously who don't have PH, but it's just different when you're talking to someone who gets it. You understand bad days, you understand side effects, you understand just the frustration of dealing with insurance or pharmaceutical companies and all these other things. It was really, really nice to just have that at a time when I felt like I really needed it. I really needed community and support and it was hard to come by here, because we were by ourselves. It just boosted me up at a time when I felt like I needed that. When the opportunity came around probably a year and a half, two years later to become a support group leader here in Oklahoma City, which didn't even have one at the time, I was more than happy really to step up and volunteer in that way. I was a little skeptical at first. I told my specialist, he had approached me and asked if I would be interested. I was like, "Are you sure? Me? I don't know anyone here. I'm not going to be of value of any way in bringing more people to the table in some respect." But I think a large part of being a support group leader or volunteer in general is just having a heart for service and wanting to help others. I think I had that void since I wasn't working and especially working in the field that I was in, special education, you get such joy from just helping others meet their goals. That was really missing for me. Here was an opportunity to give back to other patients or at least try to in a way that I know it helped me. If I could offer support to others in the same way that people offered support to me, I was really eager to kind of jump at that chance. I was offered to start a support group chapter here in Oklahoma City in, I want to say it was like November of 2019. I was really excited for starting stuff up after the holidays in 2020. Then, 2020 happened, and so that was a real challenge. Obviously, things changed for everyone. It's been a really tough road gaining traction since then, to be honest, from just the community in general. I feel like a lot of people haven't really known that there's a support group here in Oklahoma City. The patients are there. I think them being receptive to always going to support group meetings is different. I understand people value and need support in different ways. For some people, going to a meeting, that's good for them. They get out. They get to talk to other patients, it's enjoyable. Other people, that's not for them. They don't necessarily have the time or can keep up with PH stuff on top of other stuff. So I get it. It's just been challenging to keep consistent support in terms of attendance and participation. 2020, obviously, coming out at that time was not helpful to that cause and then there, obviously, was a lot of rules in place after that going forward, how we were going to do things. It's gotten a lot easier since then, but I still find participation is challenging. But volunteering is something that I feel really passionate about, and so if it wouldn't be as a support group leader, it would be doing something else. I know the PHA is really wonderful. They have a lot of peer mentors now. I think that's fantastic. Some people don't necessarily want to meet in a group. They don't necessarily want to devote an hour or so of time going to a meeting. Oklahoma is very spread out. You might have patients that would be super interested, but they live in a more rural area, so it's not as easy to come. There's older populations and populations that have a lot of medical devices, so it's just a hassle sometimes to trek out and do these things. I feel like the peer mentorship is very helpful to some people that could need it and might not be able to just get up and go to a support group meeting. Whether the support group that I got going stays under my leadership, if that's going to stay, that's great. But otherwise, if not, I think I would love to just be a peer mentor. Whatever I can just because I know that there are people that are going to be diagnosed and have no idea what any of this is, just like I was and need that support. Sometimes you just need another patient who you can see them and say, "Oh, you've had this for how long now?" And wow, they've had this for X amount of years and they're doing it. They've tried this drug and they were okay with it and they're on this treatment and they're making it work. So just being able to ask those questions. Even if you're not asking the questions, just seeing someone else living their life as normally as they can with PH. Hey, they're out there, they're doing these things. That's inspirational sometimes and supportive too, because you get that little boost, like this person's doing it. If they can do it, maybe I can do it too. As long as I'm able to offer help in some way, I'm willing to help. I have been a support group leader during a time where I feel like it was really challenging, not just for PH patients, but for everyone. There was a lot of scary stuff going on. It's compounded when you have a heart-lung disease that you're trying to manage. There are times when you speak to other patients and the value that they get from connection. During 2020 in particular, but even '21, there was a time where people I think were really feeling so lonely because of all the lockdowns that were taking place and all the extra precautions that PH patients have to take on top of everything else. When we were finally able to get out and be around other people, it just made such a huge difference seeing the connection that people were getting. But once all of those lockdowns were lifted, I feel just being able to meet up again for the first time was such a huge relief for patients. Seeing the sense of connection that they got just getting together. The first time we met, it was at a park after everything that had happened. People were so excited just to sit and talk to other patients again. We were able to get together and invited people to bring their families, their kids, things like that, and had a lot of food and just a nice picnic day. It was a beautiful day, which doesn't often happen here in Oklahoma. The weather can be very erratic, but it was so nice to have that form of connection again. You leave knowing that even if you didn't sit there and talk about your diagnosis all day or talk about whatever, medication, side effects things, whatever, just having that connection with other patients, you know that they got so much joy out of that and you left and got Facebook friend requests and things like that. You're just making connections and inroads that you know are really going to last. We've even had patients, sadly, who have passed away. Knowing that you can still talk to their family members and they will come back and say, "Wow, I'm so glad that we were able to get to go to the support group meetings. My wife really loved getting together with other patients. That was really a joy for her to make those connections." As a support group leader, you do take away after the day is all done so much joy just from bringing patients together. It is definitely something that I have gained just as much as I've gotten in the role. I'm very lucky to be a support group leader. My name is Nicole Fitzgerald and I'm aware that I'm 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: info@phaware.com
