I'm Aware That I'm Rare: the phaware® podcast

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Wendy Mercado - phaware® interview 592 09/30/2026

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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/42331905

Episode 592 - Wendy Mercado 09/29/2026

Jenn Lalonde - phaware® interview 591 09/23/2026

Jenn Lalonde - phaware® interview 591 23 Years of Survival and Still Fighting the Darkness No One Sees Surviving a rare disease isn’t always heroic. Sometimes it’s depression, isolation, and wondering if you’re even “sick enough” to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes, your mind doesn’t always follow. My name is Jenn Lalonde from Ontario, Canada, Northern Ontario, about four hours north of Toronto. I see Dr. Sanjay Mehta in London. I travel six hours to see him because there's no PH specialists in Sudbury where I'm from. I was diagnosed in 2003. I was 23, and I'm 46 now. I didn't think I would even make it till I was 30, and now I'm 46. It's kind of cool being a long-term survivor. Still here. I transitioned off of Flolan. I was on that for 12 years and then transitioned off of the pump onto Uptravi and I'm still on it. I'm on triple therapy. I'm also on Opsumit and Adempas, so all oral meds. It's a completely different lifestyle than I had known in the past being attached to a pump for 12 long years. I was told I would be on that pump until death or lung transplant. I never thought I'd see the day of an oral med. That is amazing. I'm still kind of in shock about that. Sometimes when I get up, I go to grab my pump that's not there anymore. It took a bit to get used to that. It's wonderful. The pain. I mean, I couldn't stand for longer than 20 minutes. Walking was better than standing, but you have to get off your feet. The side effects were just horrific and that's all gone now. I do still have side effects, but the side effects that I used to have, which were multiple, I don't even have them anymore. So just that alone is huge. It's amazing. Sometimes, I don't even feel sick. I have to question myself like, am I sick? I mean, clearly I still have PH, but the meds are just absolutely crazy, wonderful. I've been hoping to get on Sotatercept, but you have to be on a pump and stable, which I'm stable, but I'm not on the pump. I asked at my last appointment, but not yet. I'm not allowed yet. Everything's going well for me. I do have a bit of shortness of breath, only if I have to do stairs. It's just going to be interesting of what is next to come. At first, you think death is coming. I was very sick. It took a long time to get better on the Flolan. So now, 23 years later, it's just, honestly, I don't even feel sick. It's hard mentally still, very hard. I deal with depression, obviously, and anxiety. I kind of feel like I almost have imposter syndrome, because a lot of days, I do feel just good, fine. I'm not working still though. I haven't worked since diagnosis. I do feel like I can go back to work some days, but then other days, you are just thrown back with the side effects and just can't get off the couch sort of day, which I don't have many anymore. I used to have many bed days, stay in bed all day. But it's a really incredible feeling just being able to only take a bunch of pills every day as opposed to the infusions and all the site stuff and all of that. It still kind of blows my mind that I was able to transition off and go onto oral. It's tough because of the depression. I'm kind of on the outskirts of town, so I'm kind of a bit isolated. I go to pulmonary rehab twice a week and that is life-changing for me. That really is my thing that keeps me going. It gets me motivated and gets me... Well, obviously I'm exercising. I look forward to that. I'm 45 minutes away from town. So when those two days that I'm at pulmonary rehab, I'm just doing all the errands and stuff that I have to do. Then, I'll go home and I mean, I have two cats, and I spend a lot of time on YouTube and blah, blah, blah. I try and get crafty, like coloring and puzzles and stuff like that. I do watch a lot of TV, obviously, listen to a lot of podcasts. I love being outdoors. Outdoors is my therapy. Hiking and camping is my favorite thing ever. But of course, living in Canada, you only have a couple months to do so. Where I live in Sudbury, there's no in-person support groups. I would have to go online and do it that way if I were to want to connect with people. I think I'm the only patient. There might be one other child I think I heard of a couple of years ago that lives kind of nearby, but it's so isolated. So, I have to come down south six hours. I have my friend Nicole (Dempsey), when we get together, it's just like, it's therapy. She's like my soulmate, to be quite honest and as was Jenny (Janzer). Friends really help. I don't have many friends, but Nicole and Jenny were the closest ones. When Jenny passed, I definitely pushed away from everything and didn't want anything to do with PH. I'm still kind of in that,, but having somebody to talk to is super important, and Nicole is that for me. I got married. We've been together seven years. I was super lucky because this guy came into my life knowing I had a fatal disease. He knew all these things. He traveled six hours to be in the hospital with me for when I had a site change. I just feel super grateful because people don't get that lucky a lot of times. Justin is just everything. He's a caregiver. I couldn't ask for anything better. When I was diagnosed, I was in a long-term relationship, 10 years. We were engaged and it just kind of went downhill all because of PH and how I was. Mentally, it fell apart. It was unfortunate, because it was a really good relationship. He was a great man. He is still. We're still friends, but when I got sick, it just all went downhill. That was it. It fell apart. It's hard. Life is difficult, especially in the beginning. I guess I would just say just keep holding on. You just got to push through and just take your meds, listen to your doctors. It's very hard because of depression. It sucks, flat out. It can suck, but you'll keep living another day and another day. You just keep going. That's all I do. Just trucking on. The biggest challenge has always been how I felt mentally. Even when I was super sick, close to death, I mean, that's unfortunate, but sometimes, days are very heavy. Like I said before, you just stay in bed all day. That might even happen just because of depression. For me, it's been definitely mental that I struggle with. Since Jenny died, I've kind of also pushed away. I sometimes don't even think about it. It's always there, right? It's a reality check at conferences or at your specialist appointments, you are still sick. It weighs on your mind, but you just got to keep thinking like I've been here for 23 years, living with PH for that long and it's amazing. I hope I get another 23 years. So you just got to look on the bright side. It's hard some days, but you just got to keep positive. My name is Jenn Lalonde and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/42331855

Episode 591 - Jenn Lalonde 09/22/2026

Lynn Bouseman - phaware® interview 590 09/16/2026

Lynn Bouseman - phaware® interview 590 “Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender. My name is Lynn Bouseman. I am from Southern Illinois. I was diagnosed with pulmonary hypertension in 1994. My onset of symptoms was in 1990. It took a while to diagnose, as usual. When you're in your early 20s and you go to your doctor and say, "I'm short of breath, I'm passing out," they tell you to lose weight. I just had had my daughter, Kara. "Oh, you're just getting through pregnancy," and things like that, so they don't really take you seriously, until the pulmonary hypertension had gotten so severe that it did damage to my heart. I went in for a physical for a new job, and the guy that was doing the physical said, "Has anybody ever told you that you have a heart murmur?" I said, "I don't have a heart murmur." He said, "Yeah, you do, we need to get this checked out." It just snowballed, a hard crash to the world of pulmonary hypertension. What's so great about today is there's so much information out there that can be scary, overwhelming and stuff, but there is more information. In 1994, my mom was a nurse, so I started pulling out her physician's desk references and started looking it up. There was very little in those books about it, but what was in there was terrifying. I was hoping I had secondary, (pulmonary hypertension). I was hoping something could be fixed, but now, I have what they called, at that time, was primary pulmonary hypertension. Now, they call it idiopathic or PAH. It was a crash course in pulmonary hypertension. The internet wasn't even going that strong yet. It was just a no man's land of information. I did get the job, but I didn't work very long, because my symptoms were getting worse so rapidly that I stopped working pretty quick after that. I was in college, too. I had two young daughters, so I was exerting a lot of energy, also, at the time. It was scary. They referred me to a cardiologist in Evansville, Indiana, to have an echocardiogram. The echocardiogram went right into a heart catheterization, and went right to me being sent to St. Louis to start trying to find a treatment. There were no real treatments for it. They tried Cardizem and different drugs they had, but Flolan was an upcoming drug that had been in studies for a couple years, but it was the first drug that was actually made for the treatment of pulmonary hypertension. I got on the tail end of that study. It saved my life. I would not be here today without Flolan. It really saved my life. The first years were rough. They were really, really hard. I had to stop working. I had to get on disability. That's a challenge for anybody my age. When you look so healthy, and you're not, that's the biggest thing. You're not healthy, but you'll look it. People look at you and say, "You look good." They equate heart and lung disease with older people, not with young people. The drug really saved my life, but it took a few years. My pressures were over 100 when I was diagnosed. My doctor told me to get my affairs together. He knew I had young children. They had sent me to St. Louis. I saw a pulmonologist there. He said I really needed to get my affairs in order, because best case scenario was three to five years, but he said with how high my pressures were, I was looking at months. I looked right at him and I said, "Yeah, no, I've got a three and five-year-old at home. I'll see you in about 20 years, still." He told me, he said, "Good." He said, "That's the attitude you will need to survive this disease, because if you don't go in fighting, you don't have a chance." My youngest daughter is 34 and my oldest daughter is 36, and I have grandchildren now, but back to that time, it was overwhelming. I can remember at times just sitting crying, thinking, "Who do I give my children to?" Just thoughts of not being there for them. Then, I would just kick myself in the butt and say, "No, this attitude is going to send you right down that way. You need to make sure that you just keep positive, keep treatment." I'm religious about doing my medication. I don't miss a dose of medication still, to this day. Sometimes, I set my phone now, because I'm getting older and forget what time it is or get too distracted. When I was on Flolan, that was a lot. That could be overwhelming on its own, because you mixed all these vials of medicine. I don't remember the nanograms per minute or stuff. It's been way too long, but it was 13 vials of Flolan I was mixing up, a day, at my highest, but it knocked my pressures down, gave my heart a chance to relax and start working again correctly, because I was in right-sided heart failure when they found the disease. I think it took me about five years to really start feeling better. I gained a lot of weight, because I was so inactive. I didn't feel well, and just getting myself back into groove of life, about five years, but when I hit 30, I started doing a lot better. A lot of people I think are so overwhelmed when they're diagnosed because you do feel so bad, and you think, "How am I going to get out of this? How am I going to feel any better?" You've just got to keep muddling through it and staying strong. Move when you can move, sleep when you're tired, and just keep fighting this disease. I wish everybody had the successfulness I did with it. I don't know why some do, some don't, but there's so much more out there today to treat this. Currently, I take Adempas, Opsumit, and I started Winrevair last January. I'll have little hiccups along the line. My doctor's very proactive, and I think that's how they are with it now. They don't let pressures get a little higher and then start treating them down. I think, they see them creeping now, they knock them back down, and there's options to do that. I was just determined that I was going to see my children grow up. I was determined that I had a life to live. For a while there, I was really cautious. It seems like I didn't enjoy life, for the longest time. I was just like, "Oh, that might make something worse," or, "Don't have that glass of wine. Don't go fly. Don't do this. Don't do that." I didn't live, for a while, so mentally, I had to get through that, too. There is a lot of mental aspects to this to deal with, and not get depressed. I had a very supportive family. My mom was absolutely the best. I needed a lot of help with my kids. There was one time I was in the hospital for a whole month, and without the support system I had, it would've been a lot harder to navigate this disease. Dr. Keller's office is probably the first place I met another person with pulmonary hypertension, because he would see his PH patients on certain days. I found out one was from El Dorado, Illinois, which is not very far from where I live. The disease is so rare. You're not going to go down the street and find somebody that has it, and meeting other patients does help. I remember, when the internet first started coming up, you'd have chat rooms. You could go chat with people. I can't think of her name, but she and a few other women with pulmonary hypertension started the PHA chat groups and stuff like that. You'd just log on and talk back and forth. It's not like what we have today by any means, but it did help. You could ask questions. "How do you do this? Have you heard anything about this?" They would have doctors listed for different parts of the country where other people were from. That was really helpful, but that was a couple years into my diagnosis, before where I could log on and see what was going on in the world. There was nothing. You could go to the library, look up information, which once again was just medical, and it was terrifying. It wasn't what somebody was living through. It was the horrible prognosis and the limited treatments, and just horrible information, not anything positive and upbeat to keep somebody going strong. That was probably the worst part of it, just not knowing anybody else that was going through what I was going through. You want to know something, or if you want to see how somebody else is doing, you just pop online now and you can find so many resources. Back then, there was nothing. Here I am today, and I live a full life. I love riding my bicycle. I love traveling. I love spending time with my family, my friends, my grandchildren. The developments that have come along the way in the last, I guess it would be 30 some odd years, has allowed me to do this. It's allowed me to live the life I live now. My biggest advice is, if you feel good, go do something. Don't live your life in fear of this disease. Live your life. I mean, it's going to be your life. Just continue as best as you can. Do you. Do you as best as you can with this disease. I'm looking forward to the next 30 years, because I have no desire to go anywhere. I love life. I know this is something I have to deal with, but I will continue to. My name is Lynn Bouseman and I am aware that I am rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/42331745

Episode 590 - Lynn Bouseman 09/15/2026

Abby and Ari Borstein - phaware® interview 589 09/08/2026

Abby and Ari Borstein - phaware® interview 589 PH Didn't Just Change One Life, It Changed an Entire Family When pulmonary hypertension changed their father, Eric Borstein’s life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community " 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease. What began as one family's response to unimaginable adversity has grown into something much bigger, a movement proving that every step taken can bring hope to someone still searching for answers. Learn more about the September 20th @9am in Santa Monica, CA. Abby Borstein: I'm Abby Borstein and I am from Los Angeles, California. I got connected to the world of pulmonary hypertension because my dad, Eric Borstein, was diagnosed back in September of 2020. Ari Borstein: I'm Ari Borstein. I am also connected to the pulmonary arterial hypertension world through my dad. Abby Borstein: I think early on, pre-diagnosis, I wasn't entirely aware of what my dad was going through. I think that if I look back whenever I was paying attention, I understood that something wasn't right, but at the same time, I don't remember a lot from before he collapsed. I was aware that there was something abnormal about his behavioral interactions and things like that. But as a kid, you don't really, your first thought isn't like, "My dad has a disease." It's just like, "Oh, he had a bad day," or something like that. Ari Borstein: I was in sixth grade at the time, I was 11. We were in quarantine, so I was doing online school. Abby was in her room, my brother was downstairs, my mom was downstairs. Everyone just kind of wasn't around. I was told by my teacher to go grab a deck of cards. I left my room with my laptop on Zoom and my room is on the opposite side of the hallway from my parents' room where my dad was. He was on the edge of his bed. I noticed that he was coughing a lot, which was kind of normal, but it was more than usual and there was white stuff coming out of his mouth, too. I just slowly got closer to him and was calling out, "Dad," trying to figure out what was going on, if something was wrong and he wouldn't answer me or look at me. I got to probably six feet away from his door when he had collapsed. I didn't understand what happened, because the first thing that pops in your head when your dad falls in front of you is, he's dead. I froze, and then eventually, I started calling out to my mom who thought I was laughing at the top of the stairs when I was actually crying. Then, they called the ambulance and he was taken out. Abby Borstein: I think I heard Ari first. I was in my English class and I was in my brother's room on Zoom and I was really bored, obviously. When you hear your little sister laughing, you want to go see what she's laughing at and what's so funny. I remember I walked out of the door and I just saw her hysterically crying. I looked over and that's when I saw my dad in the pool of blood. I think we were both tunneled visioned, and so not fully understanding what was going on around us. Eventually, he was taken to the hospital after about 30 minutes of being unconscious. He went to Cedars-Sinai, I believe, in Los Angeles, and then taken to St. John's Hospital after where he was in the intensive care unit for, I think it was around 17 days, something like that. My memory of those few weeks was, I was in my room a lot, staying up until the early hours of the morning, just not really being able to sleep. There were two sides to it for me. One being that, as the oldest sibling, I felt like I had to be really strong and put up a good front and take care of my siblings. It was COVID time and so my mom was at the hospital a lot, but there was only one visitor allowed at the time. We were spending weekends with our family, friends, or people coming over to take care of us, because our parents couldn't be there, obviously. We weren't receiving a lot of information for a while so we didn't really know what was going on while he was in the hospital. I think a lot of the adults in our lives were trying to keep us away from the reality of that he was being told he had two to four months to live and being diagnosed with this really rare and serious disease. We were a lot less naive than a lot of the people around us thought that we were, but we still weren't getting a lot of the details. It was a lot of just being taken around to different places, being in our house, trying to take care of my siblings and be there for everyone, while also wanting to be entirely alone and isolate myself and try not to face what was going on around me. I remember he came home after three weeks and I saw him and I remember my siblings ran to go hug him, but he, in the hospital, had lost around 50 pounds and had an IV going into his heart. I remember there was a moment where I just didn't recognize him as my dad, which was really scary. He kind of looked like a completely different person. When you lose that much weight, you look taller and you look, obviously, thinner and he was red and tired, obviously, and had been through a lot and was just really sick. I remember I didn't really want to go touch him. It felt like a stranger to me for a second, which I never really admitted at the time, but I remember that being a very pivotal moment for me and realizing that everything was about to change in our routines and the way that we lived our lives around our dad. Ari Borstein: I think it was very different for everyone. I know that I definitely have my own story of how things unraveled, but I think with my dad, at first, he had a nurse come in every week to change out his IV and the medicine, which was obviously very different to have some nurse walk in and every week having his medicine change. I became very quiet and very careful because I, personally, didn't want to feel like another weight for the family to have to deal with. That was the start of me just becoming, "I'm fine," was a go-to answer for me. Also, having two siblings, one with bad anxiety, and Brayden was so young at the time where he, I don't think, fully understood what was going on. When my dad came back home, I would try and keep a very strong front up for my brother, mostly, because I just didn't want him to have to worry about more. Also my mom, too, who was going through a lot at the time, obviously, having her husband now come home and having all these issues and the dynamic of the family definitely shifted a lot from before. My dad was in a lot of pain. There were a lot of fights that would happen that I, personally, heard a lot of them between my parents. It was already hard before, and then once he was diagnosed, part of me feels like it was a bit of a relief in some aspects because now, my dad finally understood what was going on with him. My mom finally understood. There was no longer this friction between my dad and the rest of us because he finally understood what was going on. But also, it just created new challenges in the family with having to deal with watching your dad struggle with something so much. Someone in my life who I've always been very close with, I consider my dad one of my best friends and he was always so strong growing up. Then, to see him not be so strong anymore was really hard, which I think anyone going through having a family member go through something like this, it's very common to be like, oh, this person is no longer this rock in my life. It was hard for me to want to lean on him for things because then it was like, oh, I don't want to put more on him. I think just when it comes to dynamic wise with the family, it all shifted in a way that was like some things were relieved, but also, there's now this huge weight on your family to have to deal with. Abby Borstein: He started to come from this really awful place where he had to face the fact that he was probably going to die, or he could say no to that and not give up on his life quite, yet, for himself, but also for us. We weren't there, but I remember my mom and dad say that when he was in the hospital, he didn't want to know how long he had. He didn't really want to understand this disease completely. He just knew that he wanted to fight whatever it was. I think he came home with a goal in mind of, "I'm not letting this defeat me.", I think at first, obviously none of us knew that. None of us fully understood what the disease was, yet. It was just like Ari was saying, a lot of nurses coming in out of the house and the whole readjusting to this new way of life for himself and our family. But as the weeks went on, he was going into the hospital, getting checkups with his doctors and I think just had this tunnel vision mindset of, "How am I going to get to the other side?" He realized that with the extreme side effects of his medications that he has to take and the IV that was going into his heart, something that really helped him was walking. I think he discovered that in the hospital when they would have him walk him up and down the halls. Then, he started with taking walks in our neighborhoods. I can't tell you exactly when there was this big shift for him, or for us, in general, but I just remember all of a sudden within a year, he was walking miles and doing so much better. Now, almost six years later, he's walked to San Diego twice and walks up to 40 miles a day. I have friends that text me photos of my dad around LA on the same days saying, "I've spotted EB." He has turned into this early inspirational figure for a lot of people. It's really a testament to how much work he was willing to put into changing his life around. Ari Borstein: Watching my dad over the years coming from where he was of not even when he came home, not being able to walk down the block to now walking as much as he does and spreading awareness about something that has taken over his life. It can't be easy. I think watching that shift from going from this thing has taken over my life and something that is not easy to have to deal with or I'm sure you even talk about. I think also, the fact of admitting that you have a disease, I think, was hard for him, too, from what I saw from the outside to then wanting to dedicate his life to spreading awareness. He was up in Thousand Oaks in California and he was talking with a bunch of patients and he was receiving texts and emails after saying, "What you were saying was so inspiring and it makes me want to push and survive this and do what you do." I think seeing that shift is incredibly inspiring not just to people who live with the disease, but also to me. Seeing someone, as I said, that was so strong before being diagnosed to then becoming this weaker person to now being the strongest that he's ever been is super inspiring. I just hope that people will truly listen to his story and open up themselves and realize that there's a lot more that is possible than what people put out for diseases like this. A lot of the time, at first when he was given those two to four, however many months to live, a lot of people take that and are like, "Oh, I should just really cherish these next however many months." But to see him fight for not just himself, but also just to be here for us and for his friends, and his relationships with his friends changed a lot, too. I think he's also come at peace with what he has, as well, and being able to make a difference for more than just himself and for a greater group of people is really special, I think. Abby Borstein: I believe it was 2023. It was the beginning of my junior year of high school and I didn't want to sit with the feelings that I had anymore. It's a lot to handle as a kid. You never fully get over it, I don't think. It comes in waves, healing. It got to the point where I didn't want to feel bad about it anymore. I didn't want to feel bad for myself because what he was doing was so amazing and I wanted to be able to share that with people. I decided that I wanted to present the idea to my dad of creating some sort of event. I had no idea what that would look like, but just something where he could do a speech about what he was going through and how resilient he was and how he had overcame this diagnosis. I remember being in the car with him and I presented the idea to him, and he immediately said, "I've been wanting to do the same thing." There were multiple conversations after with my parents of what that would look like. I was coming up with ideas on my own. Then, they ultimately came up with the idea of a walk, like a 5K where people could join in and hear about pulmonary arterial hypertension and my dad's story. From there, it just blossomed into this really big thing that was unlike anything we could have even imagined. We got in contact with Team Phenomenal Hope. From there, my dad made a lot of connections with people who were trying to do the same thing with his disease. We had the first Where is EB event in 2024. Now, the Walk is going to be September 20th on Annenberg Beach in Santa Monica. Ari Borstein: Since walking was such a big part of his life, I think he just wanted the idea of what is something big that we can do to raise awareness. That was part of his healing process. I think that's how the idea of LA to San Diego came up. Abby Borstein: I don't know the full story of what was going on in his mind, but I remember being on calls with him and the people at Team Phenomenal Hope. I just think that our dad's the kind of person where once he gets his mind on something, he's going to pursue it. As new opportunities come up, he's just like, "Yes, I want to do that and I want to keep making this bigger and bigger." Initially, it was just the 5K, I think, but I think he knew deep down that he wanted to do more walking, as Ari said. That's something that is obviously very important for his story. I think just being on calls and realizing he could go even further and then meeting with doctors. Then Hap Farber, MD rode his bike along with my dad. I think realizing that he could have support with that and then trying to just see how far he can go with this event. Then, his walk after that, I think it ultimately got to San Diego, because we have family down there and it's by the beach, which is really important to my dad and that's his happy place. He says for a long time after being in the hospital, he couldn't be in the water, which he grew up on the water. That's just a place where I think he feels at peace and is able to work through his emotions that come with this diagnosis. San Diego just felt right for him. He was able to walk through Camp Pendleton because of a connection he made with Carl Hicks through Team Phenomenal Hope. It just got bigger and bigger and my dad's not one to say no to things and it made him really excited and it was such a big deal for him. This is not something that is normal for somebody with his disease or a disease like it. During his first walk, actually, he was only supposed to walk 188 miles or something like that. I was at home in LA making letters to people who subscribed every day just to update on his walk. Then all of a sudden, I got a text saying, "We actually decided to go all the way to the border and back." So it ended up being 202 miles. Yeah, it just ended up in this really big celebration of how far he'd come. Ari Borstein: I then I see people come out beyond just our friends, at first it was very shocking because I was like, "How did this become so much bigger?" Even just hearing people taking long trips just to get here and to be involved, and also going around -- because part of it is going around and asking for donations and telling that story. I think having people so willingly be like, "Yeah, I'll donate to this," or, "I want to support this," was really special. Seeing how much it's grown, too. Abby Borstein: The first one exceeded 300 people. We were aiming for 50 to 100 people. Then, we got there and we didn't have enough food and the beach was filled with people for this event. I wasn't able to attend the second one. Ari Borstein: It definitely grew. There were a lot more booths and a lot more people that showed up. Also, what I think is really fun is when we are on the 5K walk and we're all walking down with our “Where is EB” shirts, I've had a few people walk up just that we're on the beach being like, "What's this for?" I've had some of my friends go off and tell people and then I'll tell people and they'll be like, "Oh, that's so cool. When is the next one?" Or, "How do we get involved?" I think that's really cool, too. It's just seeing how willingly people are to support something that is not very known, which I think was the most shocking factor for me was that none of us knew what PH was before my dad's diagnosis. Then, to see people who don't even know what it is wanting to learn more about it and wanting to support it is really exciting. Abby Borstein: I think it is probably different for all of us. For me, there's a couple different sides to it. Part of me is really happy that somebody's so interested and I'm able to educate someone on a disease that impacts a lot of people's lives and can inspire people to get involved. Or I've had scenarios where people don't necessarily understand exactly the situation, but they can apply it to something going on in their lives and makes someone feel seen. It's always weighing on me. I think about it and what happened quite a lot, but I try to distract myself a lot and not really think about it. When we're trying to solicit auction items for the event and I'm usually going to businesses around where we live that I'm going to on a daily basis. Seeing these people that I've known for so long that don't know this side of the story, I think it can feel quite heavy. Having to explain that my dad has this disease, he almost died, but is doing really well. But also knowing that there's so many layers to that, I think it's hard to, A, encapsulate every small moment or feeling or emotion that goes along with this experience in just one short conversation and really get people involved. It's hard for me to show this side of myself. I don't think we really like to talk about it. I remember there's one situation where I ended up sending an email about the first event to our entire school. This was kind of the first time where a lot of people were learning about it. We went to a really small high school and so it's a very close community, but we don't talk about this experience a lot. I remember I went down to the library to check out a book and the librarian just looked at me and was like, "I would've never guessed that you and Ari would've gone through that. You don't seem like the kind of people that went through something that big." Our whole family tries to maintain a positive outlook or maybe keep those emotions hidden. It's turned us into the people where we want to make other people seen rather than the alternative. It's hard to have people then see that side of us, but it's also nice to then see that it doesn't have to define us. It's something that was really awful that happened to our family, but people really do care. When it comes to people coming to the event and things like that, for me, I remember I had a lot of conversations with my dad about the fact that it's almost a learning lesson, the way that you treat people in your daily lives and how much you invest in your relationships. The turnout at the event was a testament to how much my dad had invested in the relationships and friendships in his life and my mom and my brother and my sister and I. It's just a lesson in that it really does matter how you go about your days and people really do see you and see what you do for others. I think that was a positive and a light in the dark. Ari Borstein: Also, in a lot of ways, it opens up a lot of doors for... /episode/index/show/phawarepodcast/id/42331835

Episode 589 - Abby and Ari Borstein 09/08/2026

Donna Wallace Harmon - phaware® interview 588 09/02/2026

Donna Wallace Harmon - phaware® interview 588 She Didn’t Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can’t fly. She lives with limits. She knows tomorrow isn’t guaranteed. But Donna refuses to live waiting for “someday.” Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. My name is Donna Wallace Harmon. I was born in Jamaica, but I came to Canada in my early 20s. When I was born, I was a preemie with a VSD, a hole in my heart, but it wasn't repaired until 1990, because they didn't think it necessary at the time. As I grow older and then I started to complain that I'm getting cold and all the different stuff that comes with it, then, they decided to repair it. It was done at Toronto General by Dr. Tirone David and a bunch of other doctors. My regular doctor, my cardiologist, is Jack Colman from Mount Sinai, Toronto General. Along the way, I was fine until 2005. I realized I had swollen ankles. I went to the doctor, to the hospital as a matter of fact. They told me they will check it out. They gave me water tablets. I told them I had an appointment with my cardiologist in February of that time. They said, "Okay. Take this, which is Lasix, and then go see your cardiologist." I went and he didn't like what he saw when we did our echo and all the necessary tests that I'd done when I went to see him prior years. He said he's going to get further testing. But within the time, February 3rd, to be exact, when I saw him, and the middle of February, I started to feel more tired. He said you should go see a respirologist, but I didn't know why. Along the way, I went visiting my friends. Upon returning, I fell. I didn't know that I broke my tibia and fibula. As a matter of fact, when I fell, I don't know what happened after. Someone came and found me on the floor and asked me if I live here. I told him, and they went and got my husband. Then, he called the ambulance, took me to the hospital, which was close by. Because I told him I was a cardiac patient, they tested everything with my heart, not listening that I can't walk, that there's something going on. They called my cardiologist. I was transferred from one hospital to Toronto General, because Dr. Colman wanted to see me. I was supposed to leave the 6th of March. Then, the Sunday before the 6th of March, I coded, went into a coma. So many things happened during that time of the coma. They realized that I had pulmonary hypertension. That's why I was having the problems before, the swollen ankles and feeling tired, because my heart was working overtime for my lungs. I was in a coma for about six to eight weeks. Then, I was on life support. I came out in May. From May, I left the ICU and went to a step-down area, not knowing what really happened, but eventually I was told I had pulmonary hypertension. I was shocked, because I never heard about it before, didn't know anything about it, but then I realized my life has changed. My leg was still broken. It wasn't healing. It took a year to heal, because of all the problems that happened to me during this time. I had to learn to walk. I had to learn to talk. I had to learn to eat again. I had to learn to write also during that time in the hospital. Finally, I was out in August 10th, 2005. Although they sent me out, they weren't sure what was going to happen. I was still having problems. I was still learning to walk. I was still choking from my saliva and different problems arose. I had a thyroid problems, and all these little things happened along the way, but I came out. I got help. They arranged for help for me from different avenues. I got a walker. I got some PSW. I got a speech therapist to come and help me along the way. I used to go to church, so the people from the church would come and stay with me, including my family. If they had to work or if they had to do anything, they would come and stay with me because I couldn't be alone, because I couldn't walk and I couldn't do anything. I had to gradually get used to it. It took a while for me. At first, it put me in a tailspin. What's going to happen? How come this happened? I never say why, but I say, "How come this happened? I did everything that I'm supposed to do, but how come this happened?" I didn't get down and out, but I used it as a stepping stone, and I try to do the best. Even when I don't feel like it, I do the best. When someone says, "Are you okay," I still say I'm okay, because I'm fighting that feeling that I am better than this. So, I keep pushing myself to move forward, although it's a struggle, but I still push forward. That was 20 years ago. Now, I wrote a children's book. I got involved in things at church. They have a seniors program. I'm not really a senior, but I got involved in that, helping with whatever necessarily. Also, I do different activities. I go to this program that they have for retirees, but I consider myself somewhat retired, because I won't be going back to work. I would go there. They do craft. They do sewing. They have a book club. I like to read. So, I joined the book club, and they do art. Even at my church, they do art. So, I paint, although I'm not the best, but I paint. I try to keep myself busy. I'm back to cooking, but not as much. I love cooking, but I can't do it the way I used to. Sometimes I bake, but it takes a lot out to me to be doing these things, but I push myself to do it. Book writing and the art came along because at church, there's some young people and because I like reading and they always tell me, "Oh, you're good at voiceover." I'm saying, "Me?" I never see myself as doing voiceover. So, they created a group so I could be in it. I could paint. I could read. I could do voiceover. So, that's how I get to start painting. Also I do voiceover for them. Whenever they write stuff, they have me reading it. Also, I wrote a book, To My Grandmother, a children's book, on behalf of my grandmother. With that, I'm surprised, because that was never in my thoughts before, but I surprised myself by doing this. I'm thinking of doing another children's book, because I did this, the first one as twins and catered to the girls. So now I'm thinking of doing the other twin, which is a boy, the book for boys. I am surprised at myself in what I'm capable of doing, which I didn't expect to have done. I go on bus trips sometimes with groups of ladies, because I can't fly. I'm not allowed to fly. The last time I went away, I went to the US. I came back. I ended up in the hospital for about two weeks. So flying is a no-no for me right now, but that's okay. I do bus trips. I go different places with a bunch of ladies. They're always taking care of me, but I could take care of myself now. I don't need them, but I thank them for helping out along the way. To get to this point of trying to do things on my own and doing other stuff, I'm fixated on reading, reading different kind of books. I also pray every day. I get myself knowledgeable, because I know I can't do stuff. So, I try to learn something new. At least once a week, I try to do something new to see if I'm capable of doing it. If I'm not, I let it go by and try something else. That's how I live right now, because I know I'm limited, but I won't let the limit hold me down. I try and move forward with whatever I can do. I will help people. I will be a listener for someone, and if I could advise them on whatever they are talking about, I'll give them my two cents, whether they like it or not, but I'll give it to them. I do the best I can. That's my motto. Do the best I can when I can, because nobody knows what tomorrow holds. That's my motto. Nobody knows what tomorrow holds. So, do what you can today and not wait for tomorrow. My name is Donna Wallace Harmon, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40314055

Episode 588 - Donna Wallace Harmon 09/01/2026

Carolyn Mathur - phaware® interview 587 08/26/2026

Carolyn Mathur - phaware® interview 587 Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she’s still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis. My name is Carolyn Mathur. I'm 63. I live in Port Perry, Ontario right now. Originally, born in Nova Scotia and then, Montreal and then Toronto, and now just live in Port Perry by the lake. And it’s just a lovely view there. I am involved with pulmonary hypertension because after my second child in 1996, I started having shortness of breath in September of '96. That just led me to a doctor. One thing led to another, originally I was diagnosed with pulmonary embolism. Then, I just kept on feeling more short of breath. Being an advocate for yourself, for your own health, I kept on complaining about my shortness of breath getting worse every day, every day. That led me to a lung specialist, that led me to a blood specialist. Then, still complaining again, led me to the pulmonologist in Sunnybrook Hospital. That's when I was diagnosed, in April of '97 through a right heart catheterization. I was very blessed to be told that I was only going to survive a few hours. At that time, in 1997, the usual was you were given six months to two years to live, but I was very lucky to be told that I was only going to be surviving for a few hours. Because I was only going to be surviving as few hours, there's nothing you can do with that. You can't cry, you can't be sad, you can't do anything. I had a three-year-old and a one-year-old. There's nothing that can be done. Can't see my children, can't see my family. My husband and I just sat and just thought, "What are we to do?" I signed the papers that said I understand that I could pass away immediately with the drugs that they were going to be doing for me. The drugs that they tried worked immediately and my pressures came down. At that time, my pressures were 104, which I know aren't high at this time. In 1997, I was the worst case that they've ever seen. Now, 29 years later, I'm one of the best cases that you can see. So, I traveled the world. I was told I can never travel, never exercise, et cetera, et cetera. After I was given the diagnosis of only living basically till the next morning, and I did survive, I was now given a week to live. I was elated with that information of being told I was going to live for a week. How exciting and glorious is that now I can see my family and my friends to say goodbye. So, I'm in ICU for a week. Then, after that week, they told me to go home and basically die at home. Now, they gave me a month to live. A month to live, my gosh, how amazing is that. I've got a month to live, so I went home and I had a month to be with my two children and my husband. How glorious. Then, after I lived a month, they gave me six months to live. Six months, let's break the bank and let's travel. We took all our money and we went down to Florida and stayed at the resorts and enjoyed and went with our kids and just had the best time. After six months, they gave me two years to live. Two years, now what part of the world can we see? So, let's keep on going, let's keep on traveling. So, they gave me two years to live. After two years, they gave me five years to live. Five years, wow, so five years to live! So much more of the world to see. That's what we kept on doing, just seeing the world. Then, after five years, they gave up and they said, "We're not telling you anymore.” 29 years now, 79 countries and keep on going! I'm never going to stop. I'm happy with what I can do. I'm not sad about what I can't do. Doesn't bother me at all. I still zip-line. I still climb the mountains, just out of breath. Getting my socks on, I'm out of breath. Taking a shower, washing my hair and I'm out of breath. It doesn't bother me at all. I'm just so thankful of the wonderful life that I have been given. My wonderful husband, my two amazing children, my best of friends, Allison, Rose, all my girlfriends, Corey, Eileen, my amazing support team, my amazing family. In 1997, there was nowhere to go in Canada for a support group. I went to the Lung Association and they had never heard of pulmonary hypertension, so they sent me to the Heart Association. I went to the Heart Association and they said, "Sorry, we've never heard of pulmonary hypertension. You can try the Lung Association." So, I started the first Canadian support group in Toronto at Toronto General with Dr. Granton and Mary McCarthy. At that time, we had to have a social worker with us. My sister, Kelly, made our pamphlets for us with my picture on the front and Grace Wickenhausen, who passed away a few years ago, and Carmen, that passed away maybe 20-some odd years ago, and another lovely lady whose name I'm sorry I cannot remember, her photo was also in this pamphlet. It told all the information of how to get a hold of us and what we were about. Unfortunately, all those people have passed away and the group did fold many, many years ago, because just nobody was coming out. All the pamphlets that we made, we would hide in the magazines in the waiting room, because at that time it was all privacy. We didn't have the internet, we didn't have Facebook and everything else. So, we all had to hide my pamphlet and my phone number and my name in to let patients know that they can get a hold of me at any time. But I got caught and I was told that I could not do this and it was all privacy. I was a naughty girl and I still kept on doing it, telling people that they can get a hold of me. But nope, we could not do that. So, unfortunately, that all had to stop as well. Then, I just basically kind of gave up on that part of the section. I did do an awful lot of fundraising for PH. I did Quiz Nights once a month. I did Spaghetti Nights and a whole lot of stuff way back in 1997. A few years ago I was on oxygen and wasn't doing as well. I did think maybe my time was coming to an end, but my daughter lives in England and I didn't tell my daughter. My daughter and I are best of friends. We are so, so close. So yes, if I was to tell anybody, it would be her. I didn't tell her. I told Allison because Allison saw. I told Allison's daughter because she saw. Allison's daughter, who's approximately same age as mine, said, "Carolyn, if you were my mom, I'd want to know. Yes, you should tell Jacqueline." I'm just thinking like, "Ah, I just don't want my daughter to be worried." She's so far away and what have you. So, she can't do anything. So those are the kind of things that I think I will always be not telling people, because I don't want people to worry. There's nothing anybody can do. I know for myself, I doubt very much I'll be changing. Travel for me is my world, it always has been since I was a child. My first flight, I was six months old. I've always traveled, taken my children all over the world. I was Girl Guide leader and I've taken my girls all over the world, to China and anywhere I could fundraise to go to get my girls to China for free or to Europe for free and what have you. Travel's just always been in my blood and I've got five trips right now booked right up until 2027. When I was told originally that I could not fly, but then after I was living six months and we took a short flight to Florida, it was totally fine. There was no difference whatsoever. So we continued on, we flew and it was great. Then, when we did do our long flight from Chicago to Beijing, when we went over the magnetic pole, one of my other Girl Guide leaders, she passed out and she was on the floor. Because I was the main leader of this group, the stewards came to me and said, "We've got one of your leaders that she's passed out on the floor." I'm thinking, "Oh my gosh, that's crazy. I'm the one that's not supposed to fly and she's totally healthy and she's the one that's passed out." Anyway, we get over to Beijing and now we're leaving from Hong Kong back to Chicago and yet again, she passes out again over Mongolia. But no, I have had no issues and I fly several times a year and I've had no issues whatsoever even with the long-haul flights. I know live for today is one of those expressions, but truly that's what I do. Today, I'm living for today and I'm getting this foot forward today and my next foot will follow. If my right foot's going to go, my left foot's going to come after it. You just keep on going. Mindset as well, just always have happy thoughts. Right when your mind starts to just think bad thoughts, just twist it around. If you put a smile on your face, even when you don't feel like smiling, your feelings will catch up with you. If you send yourself that way to your happy thoughts, you will catch up with yourself and then you will start. Even if you just start that smile and it's like, "I'm not going to smile. I'm not happy." Just do it anyway. Just frigging do it. You put a smile on your face and then you will start. One day, if you have had a bad day and you do want to cry for myself, I know people say, "No, cry and let it out," I am kind of the opposite in that way. I'm thinking, "I'm not going to cry. There are so much other people in this world that have something to cry about. I've got nothing to cry about. I've got all these wonderful things in my life. What do I have to cry about? Absolutely nothing." With these terrible wars that are going on in our world and what have you and the different things that are happening just politically in our world, I have absolutely nothing to cry about. I'm just living today. When my husband will say, "Oh, what time are you going to be home," I just say, "I'm going to be home before midnight," because I don't know what time I'm going to be home. I'm going to be out today and I'm going to go here and I'm going to do this and I'm going to be doing that. I don't know. If I'm home before midnight, it's a good day. I just say just to keep positive thoughts and just right when you start going down the rabbit hole of negative thoughts, you got to bite it in the butt before it catches you. So you just have to put a smile on your face. I'm Carolyn Mathur and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . 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Episode 587 - Carolyn Mathur 08/25/2026

Sherri Odusanya - phaware® interview 586 08/19/2026

Sherri Odusanya - phaware® interview 586 Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger. Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn’t. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and had family across the ocean, it felt like her world was closing in. My name is Sherri Odusanya. I'm originally from Boston, Massachusetts, but have now been living in San Diego, California since 2017. I was diagnosed with pulmonary arterial hypertension in 2008. Growing up in Boston, growing up in a very cold climate, I've always had a bronchitis going on as a kid, pneumonias. My lungs have kind of always been a little bit of a challenge. It didn't really stop me from doing anything. I would always get yearly bronchitis and maybe pneumonia once in a while. In terms of my diagnosis, it was 2008. I was actually living in the Netherlands. I'd gone to the hospital for some sort of upper respiratory infection, in Holland. They were concerned about it. They actually did a CAT scan of my lungs and some other tests. I did not have a right heart catheter at the time. I got a phone call from my doctor in Holland. I was literally getting ready to go on a flight on a family vacation. I said, "Oh, I wonder who's calling me now?" I picked up the phone and my Dutch doctor told me that I had pulmonary hypertension. I'd never heard of it. I didn't know what it was. I said, "Okay, thank you very much. I'm going to miss my flight." I hung up and I did what everybody else does. I guess I Googled. I saw the dreaded news of what the disease looks like and what to expect from it. It did not look very good. I thought, "Man, I wish I would've got that phone call after my vacation." I just did my best to have fun. I even got sick on the vacation, as well. It was probably stress induced. When I got back to Holland, they didn't do any treatment for it. It was just something in the back of my mind, because I knew I'd be moving to the States a year later. We moved back to Portland. That's when I got in touch with a pulmonologist again. That's when they ordered the right heart catheter. All the truth came back that I definitely had pulmonary arterial hypertension. I had also forgot to note, in terms of my lung issues, I was diagnosed in 1992 with sarcoidosis, which impacted my lungs, which is an autoimmune disease that can impact anywhere in your body, but for me, it was my lungs. Now, I had the pulmonary hypertension on top of the sarcoidosis. There was some talk about maybe the sarcoidosis is what caused the pulmonary hypertension, which after all these years, it seems like that's what they've concluded at this point. At first, I was told I had idiopathic pulmonary hypertension, but now I'm being told that it's probably as a result of having sarcoidosis all these years, but that's how I was diagnosed. I think for people with pulmonary disease, our normal is different from someone else's normal. Even within all the patients, we have a different normal or different baseline. For my baseline, I've kind of always been used to being short of breath and working around it, seeing how can I handle different moments in my life where I have shortness of breath. I started taking one particular med to manage it. Early on in the disease, after I got back to the States and I was definitely diagnosed after the catheter, I was a mother of two children that were like seven and nine. I just had to do what I had to do very slowly, sometimes very methodically and just kind of had to fashion my life, take my medicines, try to eat healthy. And I'm just going to go on with my life, until 2015. What happened is I was dropping some family members off in Palm Springs to this mountain, Mount San Jacinto, which you go up and it's... I don't know how many thousands of feet above sea level it is. Oh my goodness, that was like a crisis for me. I was by myself in a car. I dropped them off, kind of felt like I was in the middle of nowhere. My heart started racing. I checked my saturation, because I have those little oximeters, which I advise everyone to have who has PAH. I checked my oxygen and it was at 72. I was by myself. Palm Springs was kind of a desert. There was no one around. Then, I started to panic because here I am driving with a rapid heartbeat and low oxygen. I'm like, "Am I going to pass out or what's going to happen? Is anyone going to find me?" I happened to see a lovely couple walking down the street and I just drove up to them and I said, "I'm in crisis. Can you please take me home?" They did. Complete strangers drove me back to our house. Then, I started to do some more deep diving and research how elevation and pulmonary hypertension does not go hand in hand. After that, I was put on oxygen and it was kind of like oxygen as needed. I would walk around the house and I would see how if I was sitting down, my oxygen maybe was at 94. As soon as I got up to walk, it would drop down to 86. So I had to lug this... everyone knows the deal. When you get all this oxygen dropped off at you. For me, in 2015, it was cylinders and a stay at home one. That, to me, was almost worse than the diagnosis itself. That was such an imposition. I felt like sleeping with it was like sleeping with a vacuum cleaner. I hated it. I was picking up my daughter from high school after I was told I have to have this oxygen and I just broke down and cried and told my doctor. They had me see a therapist to help me overcome my anxiety and fear and craziness and anger, whatever. Then, the other piece of that is like, some doctors were saying I can no longer fly. And that devastated me because I love to travel. My husband's from England, so we go to Europe a lot. So what does that all mean? I'll never see my in laws again. I even researched taking a cruise around the world, taking a cruise across the Atlantic, how to get over there. That really interrupted my thinking and my lifestyle and things I wanted to accomplish. Even just career wise, I worked in radio and my voice started to change. Even with singing, I used to sing, as well. I come from a family of musicians and singers. Somebody asked me to sing in their wedding about a month ago and I'm like, "Absolutely not. You remember my voice from the 80s. I don't sound like that anymore.” So, it kind of steals some joy and it steals your abilities and just different things. I know it's different for everybody, but for me, those were my experiences. I was put on an additional medicine, an additional pill. With that pill, things started to turn around. I started to exercise. I got courage from one woman in particular on the online PH support group. I was talking to her how I miss traveling. She goes, "Well, I just take my oxygen on the flight and I fly and I do fine." She was very ill. She gave me the courage to just try it. I'm like, "What's the worst that could happen?" I faint and then the plane will have to land. I thought of all the worst things that could happen when you're 35,000 feet above sea level. I tried it and she really gave me the courage. That was a really good support group story. I did fine. As long as I'm sitting in my chair and eating and with my oxygen on, on the flight. I've been all around. We've been traveling so much. Since, I've been taking my two meds and exercising and losing weight and sometimes watching what I eat, not all the time. I cook a lot, so I don't eat a lot of processed fast food at all. We don't really like that in my household. I do cook a lot. Yeah, so since then, these past few years, I'd say since maybe like 2017, since we moved down to California, and that was one of the main reasons to move to San Diego is to live coastal. That seems to really have put my pulmonary hypertension, kind of has calmed it down to the point where I don't need oxygen 24/7 to walk around. That's a huge relief. I'm able to fly. I do sleep with it still at night, but now they're even saying, "Well, maybe you don't need it at night anymore." So jury is still out for that one. But yeah, I've been able to maintain my saturation above 90, just with general stuff, stuff around the house or going for very slow walks, trying to keep a positive attitude. That's kind of been my experience up to now. I was so concerned like all of us were about COVID. I did really well when I got it. I had it once and I didn't get it till a year ago. Actually it was only in my sinuses for some strange reason. I never felt it in my lungs. My lungs were fine when I got COVID. Information is really key in kind of understanding your disease process. That goes for anything. You really have to know kind of what you're dealing with. I think so not only just going obviously to Google. I've just kind of done really deep dives into my own hypertension and sarcoidosis and being hopeful. I think what helps me get over some of the hurdles is, like I said, information, but also looking at other people that have done well on the disease. Some people have done really well and have lived a good 30, 40 years after diagnosis. That's a really good thing. It's not all doom and gloom. So once I kind of got that under my belt, it's like, "Well, maybe I'm going to be that person to do well. Maybe that's me. Maybe that will be my story." The support groups are great. I was part of the support group in Portland for a while. That was an amazing group as well. We raised a lot of money and we had a lot of fun. I saw other people in that group, another woman who was very ill, in Portland. Her and her husband, actually at the time, started a winery and it's done great. I thought, "Wow, she's not letting it stop her. She's got this amazing, beautiful winery in Oregon. She's traveling." I looked at different people who were examples who were doing well, who didn't allow it to stop them. That really empowered me. I'm like, "Okay, they're doing it. So there's hope." You almost have to tweak the disease for yourself. People come to pulmonary hypertension from so many different heart defects or autoimmune diseases or diseases that they were born with or drugs, either prescribed drugs or street drugs, which is so bizarre to me, because there's so many different reasons for people to come into this disease. You have to really kind of look at yourself as an individual and see what works for you and what doesn't work. I've kind of had to figure that all out. I'm actually very stable right now and doing pretty well. I would just say really make use of the support groups, kind of ask questions, because different people have different experiences and different tips as to what works for them or what hasn't worked for them. I have found those support groups so helpful. I have a very supportive husband and I kind of live life just probably a little slower than most people, just kind of take things in stride. But yeah, that's my story so far. My name is Sherri Odusanya and I'm aware that I am rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40725485

Episode 586 - Sherri Odusanya 08/18/2026

Kathy Ilano - phaware® interview 585 08/12/2026

Kathy Ilano - phaware® interview 585 Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment Pulmonary hypertension patient, Kathy Ilano believed she’d never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn’t stay. He did. Their love story unfolds alongside IV pumps, emergency drives, and an unwavering partnership. My name is Kathy Ilano. I was diagnosed in 2001, but I knew I had pulmonary hypertension when I was 19. I was officially diagnosed three years later. I remember I was taking a couple of steps in the subway, and I couldn't breathe. I was out of breath just walking up a few steps. I was kind of a bigger girl at the time, so my doctors just said, "You need to lose weight. This is what is happening." So, it took time to get diagnosed. Once I did, I had a few years that I was doing well, but I was in a lot of denial. I was so young, I didn't want to face the fact that when my doctor said, "You need to go on IV medication," it didn't hit me that I had to do this. I was in a lot of fear of going on medication. It was simple things like, "I can never swim again." I think the denial of it and the fear of having something implanted and having to carry it around 24 hours a day was overwhelming. I was in a lot of fear of that. At the time, there was only Flolan and nothing else. Then, an oral medication had just come out. I was in right heart failure. I'd been in the hospital for about three months. I deteriorated very fast where I ended up in ICU. My doctors would say, "You have to go on IV medication." I begged for the new oral medication that just came out, which was bosentan. I begged them and said, "Let's just please take a chance and see if it'll work." Thankfully, it did. I did well on that for at least seven years, and then the pulmonary hypertension progressed again. I went into right heart failure again. In your mind, you see yourself as being healthy. You see yourself in the mirror and you think you don't see a disability. You think, "I'm fine." Sometimes, it's part of being young too, where you compare yourself to somebody who's healthy and you think, "I should be able to do this. I should be able to do that." I realize now that it's part of the process I had to go through, but it was unfair where I had to realize I'm comparing myself to somebody who's healthy. I should be realizing that if someone healthy were in my body, they would have a lot of trouble doing just regular everyday things. So, that came to me over time. Also, how the illness can deceive you just on a day-to-day basis. You look at yourself, and you really think, "I'm okay." I think it also has to do with being young. I was in a lot of denial, and I think, in some ways, it helped. But in the long run, I think it's not sustainable. There has to be some kind of acceptance over time, and there's grief along the way, too. You're grieving different things of not being able to do the things you once did, how you change in other people's views, your relationships, who sticks around, just your plans for the future, all these things. I think it came to a point where I was in right heart failure the second time and I was in ICU. I had pretty much deteriorated to the point where I couldn't go to the bathroom even in the hospital bed. I was deteriorating very fast. I had no choice. So, I had to go on the IV Flolan. Thankfully, it worked, because the doctors at that time said, "We think you should go straight into double-lung transplant." That was the only time I begged for Flolan, because I had been resisting it for so many years. I was like, "No, no, no." But at that point, I had no choice. I'm thankful that I responded well. It's been since 2008 that I've been on Flolan. I got married in 2007. So it was a huge shock for my husband to go through with me just a few months after we were married to go through this whole ICU episode. Really, a life-and-death situation. I'm thankful it worked. It's not always what you plan in your life. I was put on Opsumit, and then I have just had my first injection of sotatercept. So, we'll see how that goes. Looking back, if I was newly diagnosed, I wish I would have told myself, "If you're googling all these things, give yourself a break, because it's so scary. It doesn't mean that's it. Your life is over." I was given two years when I first got diagnosed, two years of life. And then at one point, when I had the heart failure, I was given just any moment. I think I tried to look at it as there's something higher, and I leave it in God's hands. I can do whatever I can to take my medications, try to keep up with my daily things, but try to be kind to myself as well. Again, just being grateful that there are medications out there. Now, there are so many other oral medications when, at the time, it was just Flolan. In my mind, I had already planned and figured, "I'm never going to get married. I'm never going to meet anyone, because this is such a difficult disease to deal with. How is anyone else going to deal with this?" I pretty much figured it wouldn't happen. I did go to my high school reunion, and a couple of friends had to convince me to go, because I thought, "What am I going to go for? What am I going to say to everyone? I just had heart failure." Everyone's saying, "Hi, I've been working at this job for the past year or two years." For me, it was, "I've just been in the hospital for about three months. I'm learning to walk again and be able to do certain things very slowly. I'm on a sodium-restricted diet." All these things that actually my husband said caught his eye that I was eating carrots at our high school reunion, because that's what I had to do at the time. It was in my mind that I had to be healthy. We did meet at our high school reunion, and then we went on our first date. And this is not dating advice by any means whatsoever, but I fully disclosed that on our first date, "Look, I have pulmonary hypertension. I also have lupus." I let him know on the first date. I just didn't want to play any games and wanted it out there, but probably not the best dating advice. But yeah, he stuck around. So it worked out. It's a challenge day-to-day. We have to deal with mixing medication, which he's the one that does the mixing. He's really good at it. Also, the emergencies that come about from the IV, like when the pump fails or when you don't have your pump with you and you are maybe an hour away from your home or two. I was the lookout and he was driving “Fast and Furious,” and I said, "Okay. If the cops stop us, at least we can explain what's happening." But there are a lot of challenges that come with it, like some of the day-to-day, like when you're changing your extension line, bleeding, or accidents, things like that. I'm grateful to have someone that's there in the time that you're dealing with all of this that can help or support you, like just somebody that you trust. I'm a caregiver to my mother who has dementia. She's at home with me. So, that's been a big challenging role for me to be a caregiver as well, and it's a 24-hour job. She was there for me when I had the heart failure, and she helped me out when I was very sick and I couldn't bend down or move much. She was there for me. So now, I'm caring for her throughout the whole time that she's had Alzheimer's. I have a daughter who's 11 now. I'm juggling both, plus, dealing with the pulmonary hypertension as well. I think I need to make more time. I'm trying to make more time to do some reading and have more time with animals and be outdoors. I am running a support group in Toronto. We're mostly on WhatsApp now. It's good that they're able to connect with each other and talk to other people, as well. I think it's not denying when you are feeling just the grief of the loss of what you're able to do or the loss of just maybe even trying a new medication. Also, the fear of going through the deterioration of the illness. It's overwhelming. There's no way to suppress those things. You want to appear that everything's fine to everyone around you, because you don't want them to worry or you don't want them to feel any part of what you're feeling. It's almost like you're kind of sharing a little bit of the pain of what you're going through. Being able to express that, I think, is so important, because denying it and putting it aside, I think it comes out in other ways eventually anyway. It's a process too, over time. You realize how you're feeling and that those things are important to go through. It's like you go through the fire. There's no way around it. Sometimes, it gets overwhelming where it feels like when it rains, it pours. I felt that when my mom got dementia, and I was also struggling with the pulmonary hypertension. Even dealing with she got cancer and having to take her to treatments when she didn't understand why I was bringing her to treatments and her getting so angry. I think it's just like being grateful for the moments where there are people, for example, in the hospital that are kind and they understand. I'm grateful for those people for the moments that I have with my family. There's a whole process you go through. I was angry too at different points in my life, too. Sometimes, it'll come up here and there, but I realize, "Okay. I have certain amount of time on this earth, and I want to be able to do whatever I can with this time and be with the people I love." You reach those things at different times, at your own pace, the acceptance too. I think it's dealing with it at each point when it happens, because it's so overwhelming when you look back and think, "Oh my goodness, all these things happened over time." The good thing is you can look back and think, "I got through this." It's just moment to moment and day to day pretty much. When you're first diagnosed, it's so overwhelming. I wish people would give themselves a break from Google, from googling all this stuff. Just to know that, yeah, it's possible. Everything can result in a different way. You can have a different outcome than what you're reading about. It's possible. Just to have the support and find something greater than all this disease, because the doctors are wonderful, but they don't always know when your time is and how things will go, how you'll react. I would keep some of those things in mind, that it's not just what you read or what they tell you sometimes. It is important to take your medications, your treatments, but to know that, yeah, it's possible to live for a long time with the PH. It's possible. My name is Kathy Ilano, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40242755

Episode 585 - Kathy Ilano 08/11/2026

Christina Ryan - phaware® interview 584 08/05/2026

Christina Ryan - phaware® interview 584 She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient For Christine Ryan, being ill wasn’t the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose. My name's Christine Ryan. I'm currently and have been the living last 20 years in St. Catherine's. I received services for PH in Hamilton at St. Joe's. I was diagnosed 10 years ago, approximately, with scleroderma. Subsequently, relatively soon after that, they found that I had fibrosis in my lungs. It was inconsequential at the time, so I lived a normal life. I worked out. I was pretty physically active and I had my own company as a PSW, helping people as a caregiver. It didn't really start to affect me until, even though there was clearly fibrosis in my lungs, until about three years ago. I don't know if it was the root evil of the progression of the disease, but I got COVID in August, three summers ago. Even within a month of having had it, I was short of breath. I noticed when I was taking my client to the dining room, pushing her wheelchair, of course we had to wear masks. I equated it to that, thinking I was out of breath because I had a mask on. Then, realized no, maybe not, when I was walking the dog and I was having issues. At first, most people blame it on other things, oh, it's because it's windy today, or whatever. Mind you, I was still exercising and didn't experience shortness of breath in the regard of exercising. But when I was walking, I was feeling it. I talked to my GP about it. He sent me to a respirologist locally and the respirologist was not entirely helpful, but decided he was going to send me to Hamilton for further tests. In further testing, they found that I had pulmonary arterial hypertension. Of course, when I was diagnosed with scleroderma, like everybody, every single person, I went to Google and Googled it and found out I was going to be dead in four years. Of course, that sent me into a huge tailspin. I promised myself and my GP, I'm not doing that anymore. I really stopped researching at depth, the possibilities of anything else. I was just dealing with stuff day to day, because fibrosis in my lungs was terrifying enough. I really was in the dark. When I was becoming short of breath, I did figure it was because of my lungs and essentially it was, but I figured that was it. It was just the fibrosis was getting a little bit worse. It had, when they did testing, they told me it had progressed a little bit. I really didn't question it. And then it was like I was gobsmacked when they told me I had pulmonary hypertension. The mental aspect of it is entirely more challenging, because there's different sides to it. I've always been a caregiver. I'm a very strong person. To be put in a position of being the person that's sick and not being the person taking care was very difficult for me. Also at home, I have a husband with Type 1 diabetes who in the past has had great challenges. I have a 27-year-old son who is autistic and nonverbal. All of that going on and then being told that I had pulmonary hypertension and knowing, soon after I found that out what that meant, was more mentally challenging than physically challenging at the time. Being a strong person, I kind of am just a doer, a goer. I just automatically went into, "All right, you got to do what you've got to do. You're not going to let this control you." The physical side of it quickly taught me, well, you've got it coming to you, girl. The physical part has been more challenging. I know that I use my son as leverage for me mentally in that he's my go-to. I have to get up. It doesn't matter how I feel. I've got to get up. Like I said, I'm his person. So I'm his entertainment coordinator. When I go to the gym, he goes to the gym. When I go to the movies, he goes to the movies. It's just my life. Without that, there is a possibility, I don't know for sure because I am a pretty headstrong person, that I would have had some mental breakdowns possibly. The days that physically I wasn't feeling well at all, that I would have just given into it and stayed in bed, whereas I have not done that. It is challenging being a caregiver for sure in that there are lots of days when I probably need care and I'm being the caregiver. So for sure, that is a problem. For sure. It is. My son is partially a caregiver to me, as well. In a lot of ways, he's very perceptive and he probably understands more than other people do. He very much watches what people do in every aspect of his life. He's not very verbal, as I said, but he watches you do something and he can do it like that. He watches me do everything. I have Remodulin. He watches me do that. He knows the pain it causes. When we go out together to the gym, et cetera, he carries my oxygen tank for me. I use liquid oxygen, so it's fairly heavy. He carries that for me and he knows that's his job now wherever we go. It also keeps him close to me, so it's a good tool for me. He's very perceptive of it. When I've been in the hospital, I've done FaceTime with him so that he knew where I was. It wasn't just me saying, "I'm going to the hospital." He visually saw where I was, so he didn't worry that I was gone. I belonged to a Facebook group, but I found that it was the biggest group and the majority of the people are Americans. Of course, there are some similarities in what we go through, but also a lot of differences, as well. I have been involved in a study through St. Joe's, Dr. Hambley for sotatercept. I was in the study for, I guess it was almost a year where we're pretty certain I was on the placebo. I was. Then, it became open label. I'll be getting my 11th shot of the actual for sure drug of sotatercept. My life has completely changed amazingly. I think I had one shot before I had gone into the hospital. I had become septic last year winter. It was actually during my birthday and was in the hospital and I got quite ill. When I got out, I recovered quite quickly and the doctors were surprised at how quickly I recovered and they do attribute it to partially me being on the sotatercept. Since then, sky's the limit, baby. I am doing so well. When I was quite ill, I'm not one to exaggerate, walking from my house to my car to go out, I would be out of breath without oxygen. Completely different now. I never use oxygen now unless I am working out or taking the dog for a walk type thing, right? Doing real physical exercise. It's literally changed every aspect of my life. When I was quite ill, I never considered traveling anywhere, even within Canada, because it's just like with my situation with my son, if something happens to me, then it just becomes this huge burden for everybody. We're actually planning to go to Florida, because my parents have a nice home there. We're going to go vacation, which I didn't do for the last couple of years because I was quite sick. It's changed everything. Even mentally, like I said before, I didn't let it get to me on a day-to-day basis, really. I just forged through things, but I feel like now I actually have hope for my future. My advice to anybody that's just being diagnosed is give yourself grace. Definitely, the advancement in the medical field in regards to treatments for people with PH has been incredible. I'm hopeful for people in the future, especially when you see young kids. It's absolutely, it's different than when I was diagnosed even. I didn't have the hope for sure that I do now. One thing I probably haven't been so good at is trying to understand my family's reaction to everything. They just can't fathom the idea of me not being here. They've dealt with it in a way that isn't typical of the way I would deal with it. It's just being understanding of everyone in your life when you're diagnosed. My name is Christine Ryan, and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40286820

Episode 584 - Christine Ryan 08/04/2026

Amanda Chickie - phaware® interview 583 07/29/2026

Amanda Chickie - phaware® interview 583 The Dream She Lost at 18 and the Child Who Gave It Back One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected. I'm Amanda Chickie. I'm 36 years old. I'm from Moncton, New Brunswick, Canada. My connection to pulmonary hypertension, I was diagnosed when I was 18 with idiopathic pulmonary arterial hypertension. I was a cheerleader in high school and started during practice not feeling well. My fingernails started turning blue, all these things. Then cheer was over, so I wasn't as active for probably about six months to a year. Things just started to go downhill very, very quickly. I couldn't walk up a flight of stairs without seeing spots, being unable to catch my breath. I went to visit an art college. You had to walk up three flights of stairs to get to the audiovisual room and I didn't think anything about it. We got up to the top, and it was the first time that I fainted, flat on my butt, out. I woke up with paramedics around me. That was in a different city than where I lived, so they sent a referral to get a 48-hour heart monitor and such. When it was time to do so, they have to take your levels, do your ECG. The nurse did so. She looked at results and she's like, "Oh, my gosh, this machine is broken. Sorry. Let me go get another one." She did go and get another one. It was the same result. I will never forget the look on her face to just be like, "Oh, no." She was literally like, "Stay here. Sit down. Don't move. Stay right there." She got a doctor to come and see and just say, "There's something really wrong here. You're not going anywhere." It just happened to be that the doctor that was on call was the pulmonary hypertension doctor. I remember he walked in. He looked at me for 30 seconds, turned my head, was looking at my jugular vein, all these things. He said, "I don't know for sure, but I'm pretty sure you have pulmonary hypertension." Then, he ran all these tests. I was in the hospital for two weeks and it was confirmed. Then did all these tests to try and see if it was related to another condition, but there was no family history. There was nothing else that stood out health-wise. He just determined it was idiopathic. We just went from there to oral medications for a little over a year that I was not receiving much benefit from. They started talking about Flolan. I was 19 at this point and that was a terrifying thought for me. I went home, and Googled, and all of these things. I came back to him with Remodulin, because the half-life wasn't five minutes. It was a smaller pump. I didn't have to keep the medication cold. It was still a medication pump, but to me it just seemed... I guess, especially back then, my goal was to walk into a room and nobody know there's anything going on. It provided me that opportunity a lot more than Flolan did. He very much tried to discourage me from that, because especially at this point there wasn't a lot of people on it, and it was because of the pain associated with the site changes and the medication. It's not like Flolan, where you have a stable port. It's subcutaneous. You move it around your body when you need to. It depends on the person. But for me, the first five to 10 days, depending, are very painful, because of how the medication itself reacts to your skin, not because of the injection or anything of the little catheter. It's the medication itself. It's very aggressive on the skin, bright red, hot, swelling. It spreads to my lymph nodes, and I can't walk properly and such, because of the swelling and whatnot. It's not that pain level the whole time I have it in. Let's say it lasts for a week and then my pain going from a pretty consistent eight will go down to a two. So livable, so fantastic. We discovered that over the years, that the longer that I could keep the site in, the better it would work and the more time closest to pain free I could be. The first several years I was on it, I was able to keep that site in that specific area for eight weeks. That was incredible. As I've gotten older and because you have to constantly move it around. I myself put it in my abdomen. Just this year, I've started putting it in my leg, because I've been doing it for so long in my abdomen, and my lower back and such, I have a lot of scar tissue, because the skin is affected by the medication so much and because it's just subcutaneous. It's the skin that's absorbing the medication to bring it through the bloodstream. The skin is damaged because of the scar tissue, therefore the medication is not being absorbed to its ability, so I'm not getting the dose with which I need to, to function properly. I've had to find other areas. I've been doing it in my upper thighs, which has definitely brought me back to the more severe pain I had in my several first years with my body getting used to everything. But I've been able to get a little more time out of it, because my current time is maybe two to three weeks before a site starts to fail or I start to feel my symptoms again, because my skin is just so damaged. Putting it in that fresh area has been helpful. It does not last the eight weeks. I don't know why that is and nor can anyone really tell you. Going through maybe a week and a half, two weeks of pain, and then getting six very livable weeks after that, sign me up. Going through that week, and a half, and then getting a week, that's livable. Really, it was a drastic lifestyle change again. So, trying to find different areas that work for me has been helpful. I remember when I was told I was sick, I was 18. One of my first questions was, will I still be able to have kids? I always wanted to be a mom and explain to me it does happen. People do do it. It's a dangerous thing to do in a lot of circumstances. Each woman with the disease is different in that way. There's a level that can be checked in the blood. I don't understand it 100%, but to see how at risk both you and the baby, the pregnancy would be. And my levels were not good. I knew right from the beginning, the vision I saw for my future, which was the biggest thing was being a mom, was gone. When I was diagnosed, it was a relief to be told, "You're not crazy. There is something substantial going on here." But then the part that was the heartbreaking part was the not having children. That is what I found myself dealing with the most for the first couple years, was coming to terms with that. Not as much anymore, but especially back then I was a very mind over matter person. I didn't want to deal emotionally or mentally with the fact that I was sick and what that looked like for my future. I just kept pushing. I definitely made myself sicker doing so. Also, trying to ignore it, and not take my medication as prescribed, and things, kind of rebelling against your body and the situation in a sense. Doing all that, it really led me to a very depressive state, all those stages of grief that you feel. It hit me like a ton of bricks, because it wasn't just my body that was failing me, which I could almost understand and push through, but my mind was failing me. That was the biggest issue. The biggest thing I had to deal with was the depression, and being so tired, and confused, and not knowing what's going to happen. It's almost like you were emotionally too exhausted to even deal with the fact that you were depressed. It kind of became just who you were. That was your state. I'm not depressed. This is just who I am now. Obviously, with time, and years and experience, it has gotten better. I realized that all of me isn't pulmonary hypertension, just part of my story. But it's taken a long time to get there. I'm not going to put on any airs and say that it is a complete process, because every day is different, whether it be because of pain or just life circumstance or whatever it is. It is a constant reteaching of my brain to say that, yes, this is life, and that is okay, and not everything is the worst it could be, and all of that. It is a constant, like you wake up and every day it feels like I'm in a different body. It really depends. So, you have to just remind yourself that yes, this is your reality, but there is hope. There is always the chance of the new reality and that's going to happen whether you like it or not. After the first several years, I could see myself starting to see the pattern that I was in, because I was sick and it was just my body that was failing me. It's because of the life circumstance, I guess the condition put me in. It changed my brain. I don't know how else to describe it. I was so down. I didn't see the light. But with the medication doing such amazing things for me, I got to a place where I could see that a little more clearly. I was very ill. I asked the doctor when I was first diagnosed, I said, "If I were to walk out of here right now, what would happen?" He said, "You wouldn't live to be 21." You hear that and you're like, "Okay, so this is something I need to take seriously." Going on this Remodulin, the pump medication, it brought me from high stage three, low stage four, to I do my six-minute walk tests and I can get 600 plus meters. It absolutely changed my whole life. When you're in the bad pain and stuff, that is the thought that gets me through that I wouldn't even be here in this pain without it, so that's helpful. Over these last 18 years, it's changed so much. I get to the point where, "Oh, I am 21. I've made it." Then, you move on another three, another five. I wish looking at that abstractly, I could say I really took advantage of that, and I was really conscious of it and I made the most of it. I can't say that in a genuine way, because every day you were still in the fight. Even though your battle was lasting eight rounds, you still had to go through all of them. I got to a point where I'm like, "You're not just at this point surviving, you're living. You could perhaps thrive." That definitely was a good mindset switch. Then, when I was 27, I met my ex-partner who had a son who's two years old. I have been his mama since he was two years old. Somehow, I ended up in the situation that is what I always wanted, even though it was taken off the table. He is my whole world. He is the best thing on the planet. I don't know where I would be without him in my life, because as I said, I was aimlessly wandering. I was. I was in survival mode. It was just, "Okay, great. I've made it another year, but what does that mean? What are my goals? What are everything?" Life was too much to analyze that. I just had to keep going. I just had to put my head down and keep moving so I got to the next year. It wasn't necessarily because I had a purpose to get there. Finding my son and such, it just gave me a purpose to life, a purpose that was more than just being someone with pulmonary hypertension and surviving. Since him, as much as pulmonary hypertension absolutely affects my every day and affects who I am as a mother, it has taken a backseat to being a mother in a sense because he fulfilled my purpose. He gave me a reason to be more than just the sick girl. He gave me a reason to have goals and not just live for making yet another day. He's my saving grace. He changed everything for me emotionally, mentally, spiritually. Still in this moment, that's what I'm holding on to get me home, to get me to the next day. There are really bad days and I lose perspective. But it is that little human, that little spark of life that brings me back to reality. Reality being, yes, life can suck, but there is always hope for more than just the suck. He is that representation to me every day. Finding my purpose in life, I can't equate that to being sick early or experiencing these highs, these lows, having some kind of profound meeting with the universe because I've been through all this. It still just came down to the thing that I always knew that I wanted, and it was him. He brought me out of being Amanda with pulmonary hypertension to being Amanda, a mom who happens to have pulmonary hypertension. I'm Amanda Chickie and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40153110

Episode 583 - Amanda Chickie 07/28/2026

Lisa Harder - phaware® interview 582 07/22/2026

Lisa Harder - phaware® interview 582 A New Mother’s Greatest Fear: “Am I Going to See My Daughter Grow Up?” When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares how uncertainty nearly stole her future and how breakthrough treatment, advocacy, and hope gave it back. My name is Lisa Harder. I live in Edmonton, Alberta, and my connection to pulmonary hypertension is that I am a patient. I got diagnosed in 2024 after being short of breath and that sort of thing. I had my daughter, literally right before Christmas in 2022. I would go to the doctor, and I'd have my symptoms pushed aside and, "Oh, you need to lose weight. It's just your body getting back into the swing of things after having a baby." Then, I finally went for a physical and saw some weird stuff on an ECG. The doctor I had seen at the time did that as part of the physical. They said, "You need to go to the hospital now." So I went. Then, it was still a bit of a process, about six months, not as long as some people from what I understand. But just referrals and echoes and CT scans and blood work and all these sorts of things. Then, they kind of ruled out everything. I got referred to the Pulmonary Hypertension Clinic here in Edmonton where I was diagnosed with Idiopathic Pulmonary Arterial Hypertension. So no known cause, it just happened. My daughter was 18 months at this time, so I was like, "Whatever's going on needs to be fixed. There's no option here." It was really scary. You see pulmonary hypertension on these results. Nobody explains to you what that means, of course. You Google and you're like, "Oh my gosh, how long am I going to live? What does this mean? Am I going to not be able to work?" My career had really started to take off. I finished my master's a bit later in life. I'm a psychologist. So everything was really starting to flourish when I came back to work and it's like, "Well, do I have to give that up? I don't know what my life is going to look like now going forward." It was a really scary time, not knowing what was happening and not knowing how long things were going to take and a lot of advocacy. We really have to advocate a lot for ourselves and push to get things done quicker. It was a lot of advocating and sleepless nights, and stress and worry, and tears. Just not knowing. It was probably, honestly, one of the worst times of my life leading up to that. You have the tools and we know how to use them, but it's another thing when your world is entirely shaken and you have no idea of what's happening. I see my own therapist. I always have as part of my self-care. So just seeing her a little bit more frequently and being able to have space and use some of the tools that I know were helpful, but there’s still unknowns. So it puts things in that therapy space. We know what our clients are going through when we're meeting with them, but it's another thing when now you're thrust into that. It's like, "Okay, I get it, but I really get it," what it means when you have your world entirely changed in a way that you didn't expect. Up until this point, I had never had anything up until this point. So it was total shock to find out that you have this rare disease. Honestly, at this point in my life and my journey, I don't even notice that there's anything going on. I think from day one, because I, of course, researching everything, which that was one of the first things that Dr. Jason Weatherald said, "Please don't read things on Google. It's going to create all this fear and there's a lot that's changed. So please don't do that." But I already had at that point. I read a lot about, and he had talked a little bit about this when I first got diagnosed about this drug called sotatercept that was coming out. As much as PH is something we need to take seriously, there's some really good treatments that are coming. So I've been from day one had been saying, "Yeah, if I qualify, please start me on it." I read about all these amazing things that this drug is doing for people. I'm willing to do anything at this point to live as normal life as I can, for as long as I can. So let's do it, let's do it, let's do it. When the study got approved, he's said, "Hey, I think you might qualify for this." My symptoms had improved enough that I could, because there's exercise involved, that I could exercise. He's said, "Hey, if you're interested in this, I think you'd be a good candidate." We did some chatting about it because outside of this, by Canadian standards, I wouldn't qualify for the medication because I'm not sick enough. But there's still some markers that were a little bit outside of where they should be. So he said, "Okay, well, let's just do some extra tests." I had to go in for a heart catheterizaion again, which is always super fun. (laughs). Not at all, but we went for that and he said, "Yeah, okay. Well, I think this makes sense. This is something we should try." But at the end of the day, of course, it's up to me to decide. I know it's more work because you have more visits to the hospital and all this kind of stuff. But I said, "Yeah, anything that can possibly really benefit me, I'm willing to do." Even if it means more tests and feeling like a pin cushion and feeling under the microscope and all of that. I never really sought out to be part of a clinical trial specifically, but it was just really wanting to access the medication. Honestly, since getting on that, I don't even notice that I have pulmonary hypertension day to day. There's no symptoms. I can keep up with the three in a bit year old. I work full-time. There's been really no impact on my day-to-day. I'm really grateful for that. I know that's not the experience of a lot of people. My partner is a stay-at-home dad. He really helps out a lot with our daughter. He's a really good support for me, as well. So just times where I'm maybe a little bit tired or whatever, or before I was on the medication that I am now, he'd be like, "Yeah, you know what? If you need to go to bed early, that's okay. I'll stay up with Ayla and you go sleep or you go do whatever." He's really supportive and encourages me to slow down and take some time for myself, which I'm not always good at. One of the biggest shifts I had in thinking was I have all these goals that I want to do, but what is actually really important? At the end of the day, my family. My career is important, but my family's also really important. So I think it's really helped me to have a better work-life balance than I think I would have otherwise because we don't know what's going to happen. Ao let's make the most of every moment and be in the moment and be present. So I really, really try to do that every day. And so much as PH sucks and it sucks that this is the reality of things, it's also, I don't think I would have that shift in thinking had I not had this diagnosis. I don't know that I'm grateful for it, but I'm grateful for that perspective change. When I first got diagnosed, I joined the Canadian on-line support group for people with PH. I actually recently signed a contract with PHA Canada to work as a knowledge philanthropist in a volunteer position. I wrote an article also for the PH magazine that comes out through PHA Canada. Originally, when first got diagnosed, I just reached out virtually through that support group and it was really helpful in understanding next steps. Like, "Okay, this is what to expect. You read this online, but this is the people who are living with this." It was nice to just have that extra support there just if you have questions even like, "Okay, it's cold and flu season. What do I do? How do I navigate this with the child?" Even those logistical things. Honestly, I feel really hopeful. At this point, I don't have a reason, I don't think, to really worry about anything. My treatments are working really well. Sotatercept has been amazing. I feel like I have a future. I was worried. One of the biggest things was that I'm not going to see my daughter grow up. Now, I don't worry about that. I feel very, very hopeful about that, that I'm going to be around for all of her big milestones. Now, my worry is like, "How do I contain her, make her not get into things she shouldn't be?" Rather than like, "Oh my gosh, I'm not going to be around to see anything." It feels so hopeful. There's a lot of misinformation. There's a lot of negativity. And it's not to say that people have a different experience, but I think for me, it just really speaks to how varied our experiences are. I've always been an advocate in any role that I've held, whether it's in mental health or outside of that or just causes that are important to me. For me, it's really important to advocate for awareness of this, first of all, but also quick access to medication that we need, support, all of that, because people don't know about it. You're in this void of like, "I don't know what to think. I don't know what to do. I don't know what the next steps are. I don't know what to expect." We need just more awareness, quicker access to things. And quicker, if possible, to be referred to the PAH clinics and diagnosed quicker. I think the other thing, when I first was diagnosed, it was challenging too, is you see all these doctors that know nothing about it. They're telling you all these things that aren't true. That doesn't help when you're already fearful. Then you, get to the point where you actually meet with a specialist who's like, "Oh no, that's not accurate." And you're like, "Okay, but that was what they said." So I think just more education, both with health professionals, but also for people who are experiencing this, their caregivers on what to expect. Maybe areas that we might have to advocate for or what we need to do to not have that needless anxiety, because it's already life changing. If there's anything that we can do to ease some of that anxiety, the better. Maybe the other thing I would say too is sometimes people really hesitate to get involved in clinical trials. With sotatercept, people are like, "Well, it's an injection and I don't know how I feel about that." If you think it will help, take the chance, honestly, because I don't think it's unique to me. There's so many people that are on sotatercept that have just this really amazing change around. I really hope for everybody to have that. Thanks for listening. My name is Lisa Harder and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40671785

Episode 582 - Lisa Harder 07/21/2026

Cathleen Harrington - phaware® interview 581 07/15/2026

Cathleen Harrington - phaware® interview 581 From Wedding Bells to a Life-Altering Diagnosis Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she’s still here, still fighting, and still building a life around gratitude, hope, and her children. My name is Cathleen Harrington. I was diagnosed with idiopathic pulmonary hypertension 21 years ago. I was a very active person. I thought I was totally healthy. I had never had any other health issues. I was a hiker, biker, runner. I went to the gym often and all of a sudden, I couldn't walk up a flight of stairs without having to sit down at the top and catch my breath and wait for my heart to slow down before I could move on to what I was going upstairs for. That was often like five minutes. I went to multiple doctors trying to find out what was wrong. I know that I'm one of the lucky ones. I know that it often takes two to three years to get a diagnosis for pulmonary hypertension because it is such a rare disease. I went to a few doctors, I don't know if I'm lucky, from the area I was in. I live just outside of Washington DC and saw a few good doctors that kept narrowing things down. The cardiologist said, "It's not your heart. You should see a lung doctor." Luckily, the lung doctor that she referred me to was very much on top of things and did the tests. It still took a few months trying to rule everything else out because he did not want to give me the diagnosis of pulmonary hypertension. Ultimately, he did. It was a very interesting time. I was just about to get married and was about to go to Costa Rica for our honeymoon. My doctor knew this and he told me to go enjoy my wedding, enjoy my honeymoon, and he would do the final testing when I came back. I'm glad that he waited a couple more weeks to diagnose me. So we went to Costa Rica. I did as much hiking as possible. I was definitely more limited on what I was able to do. Hills and stairs were the hardest, but we went and had a great time and came back. That doctor's name is Eric Libre. He's just amazing. He was very positive and helpful and I'm so grateful that he is the one that diagnosed me, because I've heard so many horror stories. There are doctors that tell their patients you have three to five years left to live. Dr. Libre, actually, told me that there was a lot of new medications coming out. This was back in 2005. Lots of research was being done, clinical trials, all kinds of things. They'd caught this early. He said I probably had 15 to 20 years to go until I would need a lung transplant. Considering I had just gotten married and couldn't wait to start a family, it was good to hear that I still had a future to look forward to. I was told that it would not be safe to carry a pregnancy. There's a 50/50 chance, typically, at least back then for the mother to die. We immediately went through channels to start the surrogacy process and we were able to have a beautiful boy, and then a few years later a daughter. So I was able to live out that dream of being a mom. That's going really well and that's been one of my main motivations for trying to stay as healthy as I can and staying on top of my illness just so I can be here as long as I can for them to get to experience everything with them. I did pretty well. I was a school counselor at the time. Another thing that Dr. Libre advised was going part-time because he said stress can make the illness worse, the progression of the illness. I did go part-time, so I was still able to keep my career for another nine years after I was diagnosed. That was just for me, the best of both worlds. Getting to part-time, be home with my son and part-time do the job that I loved so much. After nine years, my illness was progressing so I did need to retire at that point. I was okay with that at the time, but it's been a few years now and I really, really miss working. I really miss working with people in education who are passionate about their jobs and the kids and hope maybe to get back to that at some point. I did make it about 13 years before needing the transplant. I was really hoping to hold out for 15, but it was time, so I was evaluated. I had been with the same clinic the entire time and there they're a major transplant clinic. I went through the workup for a lung transplant that took about nine or 10 months and then again, I was fortunate I did not have to wait very long for a transplant. My sister came out from the West Coast and brought her twenty-something daughter with her and they came out for a long weekend for a dry run, to go through what we would need to do when I got the call that there were lungs available. We just had a great weekend. I took them out to get a massage and to thank them for coming and supporting me. Right after our massage, we were sitting having tea at the massage salon and I got the call. It had been probably about two months that I had been waiting and I was expecting to wait another three or four months. It was just a miracle, one of many, the timing of that. I was not expecting to need the lung transplant yet. I knew that I was declining and I was on oxygen at that time, probably on two liters, maybe like five with exercise or if I was going shopping or something, but my energy levels were okay and I just didn't feel that sick. I was in multiple clinical trials during the time that I had pulmonary hypertension. I attended one in Lancaster, Pennsylvania that I would go up to regularly, another at Johns Hopkins, another at NIH. It was when I was at NIH for that clinical trial that the doctor looked at me and he just said, "It's time. You need a lung transplant." He wasn't kind or gentle about it at all. I was very tired from having to drive up to NIH and do a whole day of testing and everything. The nurses offered to push me around in the wheelchair rather than have me walk all over the hospital and I said, "Yeah, sure, why not?" This doctor sees me and says, "It's time, you need a transplant." This is the first time I'd heard that. I knew it was a possibility down the road some time, but to be told it was time. He saw that I looked shocked and he said, "Look at you, you're in a wheelchair." I also probably looked as exhausted as I was that day, so that was shocking. I called another one of my friends with pulmonary hypertension, Lina McDowell, and cried to her my whole drive home. She was very supportive and she knew that she would be in the same shoes someday. She supported me and tried to comfort me and helped me come to terms with it. It is scary thinking about needing a lung transplant. You never know how it's going to go if you're going to survive the surgery or if there are going to be complications. I have lost friends that have had transplants. That's very difficult, but mine came off without a hitch, I guess you'd say. It was a no-brainer in that I had young children. I was definitely not going to give up the opportunity to continue to be here and also looking forward to maybe being able to hike again someday or go for a run. So, I got the call. The transplant went well. I was in the hospital for 17 days I believe after the transplant and have had a couple of episodes of rejection that they have treated. They changed up my medicine last year and I don't know if this is what started it, but I was in rejection a month later. They treated me but slowly. They definitely didn't seem to be on top of it. I had to keep contacting them. "Okay, I've finished this course of treatments. Are we going to do a CT scan or a chest x-ray or something to see how my lungs are doing?" It was a year-long process. I have been in a clinical trial for treatment of lung allograft. I guess they would call it CLAD (Chronic Lung Allograft Dysfunction). I can't remember exactly what that stands for, but it's a type of lung rejection. I have been in a clinical trial for that since August. I'm stable now. I have been for months. I'm at 70% lung function, whereas before I was at 95%, so I still feel a little short of breath all the time and kick myself from moving into a two-story house after my lung transplant. I was just so optimistic. I missed my one-story house that we moved into after I was diagnosed with pulmonary hypertension. I'm incredibly grateful to be here. I think most patients with pulmonary hypertension get to know their bodies really well and know which signs to look out for. There were no signs that I was in rejection last year, but I got on a plane to Arizona for the holidays to visit family and noticed I was feeling short of breath on the plane. I think the next day, I went to the drug store and got a pulse oximeter. I had them at home, but we were on vacation and I hadn't needed to use it for quite a while, so I didn't pack one. I used it throughout the week I was there just checking here and there. I noticed that my oxygen was dropping, not extremely, but a few points and used it on the flight home. I got to about 87, 88% while flying and I had been flying with oxygen prior to my transplant. I flew to Paris with oxygen. Actually, as a side note, I did a lot of traveling before we had our kids. We took an international trip every year. I didn't need oxygen at first, but eventually I did, but that didn't stop us. We went to Spain with my son when he was three. We went to Italy, Costa Rica, as I mentioned, went on a few cruises. There is definitely life with pulmonary hypertension and even after. I haven't traveled as much post-transplant, but mostly that's because of COVID. I didn't go anywhere for a couple of years because of COVID. I have flown back to California to visit family a few times, but get sick pretty much every time I fly, even though I wear a mask. It really has to be worth it for me to get on an airplane right now. I'm planning something now, just not sure exactly where, but we're definitely going somewhere international this summer. Now, we have kids' school schedules to work around. That makes it a little bit harder, especially with a high schooler. They can't miss a day. Stresses them out. Since I'm not working in education, I've become a certified yoga instructor for kids yoga. I haven't been working at that for a few years, but I still maintain my practice and hope as soon as my youngest is a little bit older, I can start doing that even if it's as just a volunteer basis. One of the downsides with the lung transplant is the prednisone that you have to be on forever. One of the main treatments for rejection is very high doses of prednisone. That has given me some health issues, but one of the things that I've had since about a year after transplant is chronic fatigue that makes it hard to do things like volunteer. My schedule is very unpredictable. My main focus right now is taking care of my kids, so when my daughter's a little bit older, I really hope to get into that and I miss being a counselor, so maybe volunteering for people with chronic illness, definitely running support groups or something just so I can get back into the other things that are important to me. As I look back at the beginning of being diagnosed, I had never heard of pulmonary hypertension. My husband had never heard of pulmonary hypertension. Pretty much no one I knew had. However, around that same time, one of my coworkers brought to work a magazine, I want to say it was Vogue. A very famous pulmonary hypertension patient, Charity Tillemann-Dick, had been interviewed in the magazine. She was an opera singer and an amazing human being. I was fortunate to meet her, so reading about that right at the diagnosis and having her in that magazine so I could share with my friends and family. Here's this article and you can read about it a little bit. My coworker and friend was so kind to bring that in and share that with me and made it a little less scary for me, seeing just how amazing Charity was. It was scary, but I've always been a fighter. I lost my mom when I was very young. She, unfortunately, died of brain cancer, so I kind of just fought to survive and have the best life possible without having her here. She was an amazing person. So, when I got my diagnosis, it was just another obstacle to overcome for me, and I had overcome many up to that point, putting myself through undergrad and grad school to become a school counselor because I love kids and I've always wanted to help them in any way possible. It was just, okay, how do we deal with this? What do we do about this? That's why I say my doctor's attitude had such a positive impact. Here I am 21 years later, he was right that I would still be here 20 years later, but it was incredibly devastating to hear that I would not be able to carry a pregnancy, but again, another obstacle. I looked into surrogacy. I found a surrogacy agency nearby. We met with a couple of high-risk pregnancy doctors. All of my doctors said that I should in no way attempt to carry a pregnancy. Again, I think that things have changed a little bit. Some people are doing it successfully now. That was devastating and hard, but it was just another obstacle to overcome, and I did that. The progression of the disease was so slow that being able to work for another nine years was just such a blessing, and I'm so glad that that worked out. I do miss working a lot, but again, I'll figure something out. I think I'm naively optimistic, but I just always choose to believe that the best thing is going to happen and what's supposed to happen is going to happen. With the pulmonary hypertension, I always knew that if it got too bad that there was always the opportunity of having a lung transplant. Once you've had the lung transplant and that being the last thing that you can do, it becomes scarier having it out there that, "Okay, I don't need one now. I might need one at some point, but we'll deal with that when that comes." When I got the transplant, I was surprised afterwards thinking, "Wow, that's it?." My doctors have said that I would be a candidate for a second transplant if needed. They were talking about that last year when I was in rejection. I would do it because of my kids, but the medications for transplant have made me sick in other ways. The first time I went through it was not terrible. Like I said, I wasn't in the hospital more than a couple of weeks. The healing, it takes probably a year to start feeling like yourself again, but then I started having other health issues. So, having another transplant, I'm like, "Ugh, I've already got all these other issues. What is another lung transplant going to do to me?" So, it's scarier. It's scarier to think about that, now. I'm praying that I'm one of those lucky ones that make it to 30 or 35 years. I know someone who's at 35 years post-transplant, and I know a number of people who have gotten second transplants and are doing okay, but I just really hope to not have to make that decision again. My name is Cathleen Harrington and I'm aware that I'm rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40704415

Episode 581 - Cathleen Harrington 07/14/2026

Evan Holm, LMSW, SWCM - phaware® interview 580 07/08/2026

Evan Holm, LMSW, SWCM - phaware® interview 580 Why a Social Worker Might Be the Most Important Person on a PH Care Team When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right heart catheterization at University of New Mexico Hospital. As a support group leader for PAH, he is passionate about providing emotional and educational support to patients and their families while assisting them in navigating the healthcare system. His work proves that access, advocacy, and compassion can be just as lifesaving as medication. I'm Evan Holm. I'm the social worker for the University of New Mexico Hospital, Pulmonary Hypertension Clinic. I'm also the living donor social worker for our transplant department here. I really kind of fell into this role. I was actually working inpatient and there was some hospital restructure and the position that was open was the pulmonary hypertension and the transplant clinic. So, I started there and haven't looked back since. It's been over five years since I moved into this role and it's been fantastic working with the doctors I work with, working with all the patients. I get to do a lot of fun stuff with everyone, so it's really great. As a social worker, I really like to think of myself more as a navigator. I help our patients navigate our healthcare system, help them with their insurance, help them get the medications that they need. A lot of these medications have super high co-pays, so I help them navigate the assistance funds and get them signed up for funding for their medications. My patients call me with all kinds of questions. They just know that I'm here and can help them get to the doctors, get to our advanced practice providers to help answer their more clinical questions. I'm here to help my patients with whatever they need. I got involved in the support group. Again, I fell into it. The previous social worker had run our support group, so I just kind of took that over when I took over this position. She had a really strong support group going, so I've just continued that on and kept our patients coming in. Our meeting's once a month at one of our outpatient clinics, so it's really nice that UNM has that space for our patients to meet. As outpatient, I get to spend a lot more time with my patients than I did inpatient. I've known my patients since I've been here, for five years. I've really got to know them well and build that relationship with them, really have that good long-term relationship. It's been really nice being able to see them evolve and connect with their diagnosis and really come into their own with their pulmonary hypertension. We have a really unique approach when we first see our patients, when they first get diagnosed. I actually go to the catheterization lab with the providers, with our nurses. I watch a lot of the caths actually. Then, we meet with the patient after the cath. So it'll be me, the providers, our advanced practice providers, our nurse case managers. Then, I really just talk the patient through their diagnosis, through their hemodynamics. That causes a lot of stress, a lot of anxiety for patients, because they're like, "Oh gosh, what's next? I have this diagnosis. I finally have a name to whatever is going on with me." A lot of our patients, it could be 2, 3, 5 years that they've had PAH and gone undiagnosed since it's such a rare disease. So, really just talking them through what does it mean to have pulmonary hypertension, what are the next steps, what our roles are, and helping them either get their medications. Or if they have CTEPH, I help them get out to a center that does the surgeries, really walking them through what that means. I give everybody a new patient packet that explains what pulmonary hypertension is, what to look out for, what to do if they gain two pounds in a night, five pounds over a week. Give us a call, we're really here to help the patient out. I've had patients break down after the right heart catheterization. I do that crisis intervention really after the cath, just to walk them through those first steps after they get their diagnosis. During our support group, it's really great, because we do talk about the diagnosis, what does it mean to the person. But it's also the patients providing support to each other and them talking about their diagnosis and what it means to them and their understanding of the disease. It is really good to see what the patient understands about pulmonary hypertension. That way, I can help dispel anything that's incorrect. There was that study that says (patients) are not supposed to live after five years. So, I talk a lot about that. That's a study if you didn't get on any medications, that's what it was. It's really dispelling all of those misconceptions about pulmonary hypertension. It is really great to get each of my patients to support each other and they just talk about what they're going through. Some of the wrong assumptions I see from my patients is that they can't do anything. They have this diagnosis, they're stuck being at home, not being able to do what they used to do, things like that. I and the support group really encourage people to just get out and live their life and what they want to do. It might look a little different. They might not be able to do as much as they once used to. That's really that grieving process that I and the support group help our patients walk through. There's a ton of new patients that come in. They get this diagnosis and they'll come into the group. I have patients that have been diagnosed… I think our longest was diagnosed in '97, so I'm not great at math since I'm a social worker, but 27 years, however long that is. So really just seeing these patients that had this diagnosis for a long time really brings hope to these patients that are newly diagnosed. It has changed me a lot working with these patients. Just seeing what they go through makes me see I am nowhere near as strong as some of my patients. They've been doing this for 10, 15, 20 years, dealing with these heavy dose medications that cause all these side effects. They're strong, they get up, they do what they need to do, they live their lives. It's really great seeing those patients that are strong and do what they need to do. The one piece of advice that I give someone who is just newly diagnosed with pulmonary hypertension, or really anyone with pulmonary hypertension, is to look into a support group and know that you're not alone in what you're going through. Get out there and meet people, because it's such a rare disease. I tell my patients, you won't meet someone else with pulmonary hypertension in the wild. Running into someone at the store with PAH, it's just not going to happen. Really connecting with people and seeing that you're not alone in what you're going through is really powerful. Being in New Mexico, we have such a diverse population. We have a huge Native American population here in New Mexico, so a lot of scleroderma in that population. There's no one face to pulmonary hypertension, it's very diverse. Even the populations I have here in New Mexico are very different than anywhere else that I've seen. I just want to mention that we're special here in New Mexico. I'm Evan Holm and I'm aware that my patients are rare. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40047710

Episode 580 - Evan Holm, LMSW, SWCM 07/07/2026

Laura Camponeschi - phaware® interview 579 07/01/2026

Laura Camponeschi - phaware® interview 579 Who Cares for the Caregiver When Everyone Else Comes First? Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout — the emotional, mental, and physical toll that builds when someone is “always on” and never feels safe stepping away. I am Laura Camponeschi. I am the medical office coordinator for the Johns Hopkins Pulmonary Hypertension Program. I have been with the office since 2009, so about 16 years, and I am privileged to be the support group leader for the Johns Hopkins PHA support group at our hospital. Today, we’re going to talk about a topic that is near and dear to my heart, caring for the caregiver. Every day, I see how important it is to make sure our caregiver’s cups are just as filled as our patients, especially since they are one of the most essential people on our patient’s care team. I’ve seen so many cases where caregivers were the ones taking care of patients and they got burnt out themselves and the patient was actually in worse condition. They lead an active role in helping them make decisions and informed decisions. There’s also the mental and emotional aspect where you do have to be their support and try to help them through, because PH is a pretty devastating disease at times and it does get hard and scary. So, you do have to have someone there to help you emotionally and mentally cope with everything. Of course, you’re also their caregiver. A lot of times when things get worse, you take care of all their daily activities, help them with all the meal prep, everything from A to Z at that point. Really, it’s quite easy to get burnt out when you have someone asking — and you’re happy to give, but someone asking so much of you and there’s only so much of you to go around. You have to wear many hats throughout the day, throughout every hour, to try to get everything done and make sure your loved one is cared for and taken care of well. For the most part, I think we do a fairly good job of addressing that. We have two fantastic nurses who are very sympathetic and understanding and we really do try to take time to emphasize both that the patient obviously needs to be taken care of well, but that the caregiver needs to take care of themselves, too, and make sure they’re in a good state to help take care of the patient. One of the biggest things with the burnout is just you have to be everywhere at once and it’s exhausting. Sometimes, you have to always be on and you can’t really get a day off, or at least you don’t feel comfortable taking off a lot of times and getting a day to yourself, especially when you know your loved one needs you. Fortunately, there are programs both with insurance and with even palliative care where there’s respite care options where a lot of places will be able to help take care of your loved one and give you a couple hours. Even a couple hours is great, just to give you a chance to relax and pause and take care of yourself and your mental health and your well-being. One of the many things we talk about is both taking care of your emotional and physical well-being. Obviously, taking a break to de-stress and go to the mall or read a book or anything just to de-stress yourself. Even something as simple as going to get your nails done is fantastic. Then, obviously, the physical aspect, that it’s okay to take care of you too. Whether that’s going to the gym, which also gives you some endorphins with the mental health or just going to the doctors yourself and making sure you’re healthy. A lot of times it’s just reminding the caregiver that it’s okay to take care of yourself, too. You might not be as sick but we want to keep you healthy so you can take care of your loved ones the way you would want to and the way you expect yourself to be able to. It’s hard, because I have that responsibility to the patient, so I feel frustrated for them at times. But then I try to step back and remember that the caregiver is a person too and they sometimes need time to themselves. It’s a very high-stress job taking care of someone all the time and being responsible to make sure someone else is going and doing as well as they can. I always try to talk to patient caregivers and remind them that it’s okay to step back and take care of you for a weekend, or if you have family members, it’s okay to ask for help. That’s a big thing too, asking for help. It’s really hard to do. I know that personally, with myself, too, but if you ask for help, there are so many people that would like to help you a lot of times is what I find, but they don’t know how to help. If you ask for help and ask for specifics, people are happy to help and come in and sit with your loved one for a few hours or take them to appointments so you can get a breather or anything like that. I think a lot of times is people don’t want to burden other people or they feel guilty burdening other people, because you feel the sense of responsibility that you have to do it all to take care of your loved ones. Or even as a patient, you have to do as much as you can and burn yourself out instead of asking for help. I have found that patients’ loved ones are happy to help if you just ask them what to do, because sometimes people don’t know what would be the best and they don’t want to overstep or upset patients or even offend you. Not that they’re trying to, but they don’t want to upset you or make you feel bad for trying to do too much or they don’t want to hurt your feelings, which is another hard thing. You don’t know what to say or do sometimes, which also is scary. Sometimes, in my day-to-day interactions with the patient and their caregiver, it can be pretty frustrating to see some caregivers much more invested and engaged than others, just because I feel that obligation for our patient to make sure they are the best cared-for patient they can be. But then I try to remind myself that we are all human and that caregivers are people too. They’re not just the caregiver, they are their own entity. Not saying they shouldn’t take care of their patient, but it’s okay for them to step back sometimes and ask somebody else for help or have somebody take their loved one to their own appointment. Sometimes it’s hard, I think, as caregivers, because we don’t see what goes on at home. We just see who brings them to the appointment. Whereas, if the granddaughter always brings them to the appointment, I don’t see the daughter. So then it’s easy to assume they’re not involved, but they probably are just as involved. We just don’t see that aspect as much. Going to the support group and having other people share their stories, which validate your feelings actually does feel good. It does help you feel like you’re not alone. I think the PHA support groups and support groups in general are good, because you don’t feel as alone. Hopefully, you have someone that can validate your feelings and share your concerns. Or as a patient, you can have someone that you can tell things you wouldn’t tell to other patients about how you feel or what’s going on. Sometimes, I feel like we’re so conditioned to throw on a brave face and be brave, but it’s nice to be able to share it, or you’re frustrated or you’re angry and it’s nice to have someone to share that with. A lot of times, support groups are great for patients for developing a relationship with another patient and being able to not be so alone. I find that the support groups help them connect and then they go on to develop great relationships out of the support group. I know the diagnosis, once you look online, is pretty grim, but to have hope. There are great places like the PHA and phaware® that can help educate yourself and help you connect with other patients and caregivers, so you’re not as alone. You don’t have to do it by yourself. You do have people. You just have to do your research and find out how to connect with people. My name is Laura Camponeschi and I am aware that I am rare. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40047480

Episode 579 - Laura Camponeschi 06/30/2026

Dawn Ogden - phaware® podcast interview 578 06/24/2026

Dawn Ogden - phaware® podcast interview 578 Three Generations. One Gene. A Rare Disease She Couldn’t Outrun. Dawn Ogden has lived her entire adult life under the shadow of pulmonary hypertension. After losing her sister and watching her father battle the disease, Dawn learned it was genetic—and that she carried it. What followed was a lifetime of testing, fear, and impossible choices as she faced the reality that the same gene could shape her children’s futures. I am Dawn Ogden. I am from Salt Lake City, Utah. I came to be aware of pulmonary hypertension about 30 years ago when my sister was diagnosed. Then, when we found out a few years after she passed away that my dad had it, we knew that it was genetically inherited. That's when they were testing for the genetic gene. It was a few years after my dad was diagnosed that my daughter was diagnosed, so I obviously knew I had the gene. I passed it on. I genetically tested all of my girls to see if any of them had the gene also. One daughter did have pulmonary hypertension. Then, my youngest daughter had the genetic gene. So, we were testing every year to see if there was any changes. Everything was going really well until one day I hit my back. It just started where I didn't feel good. I was out of breath and getting a little bit weaker and not being able to go up the stairs. My mother had come over and took my oxygen and it was at 65. She's said, "You're going in," I went in and that's when I found out that I also had pulmonary hypertension. Our process was they wanted to test my daughter Taylor to see if she did have it. It was confirmed. My biggest fear was that one of my children was going to get it and I didn't have a way to stop it. That's why I chose to genetically test my girls, because I would rather catch it earlier than way down the line when it was too late. My daughter was diagnosed in 2007. She had a double lung transplant in 2009. I was diagnosed in 2020. It's hard, because you have to look at it, as it's your mortality that you're worried about and oh, how long do I have? Trying to just get everything in line. Then, I just worry with my youngest daughter, is she ever going to get it? My youngest daughter does have the genetic gene. We have been testing and doing echoes since 2008. We've had a couple scares where she's had to have three right heart catheters, just because there was discrepancies in the echo in the EKGs. They said, "Oh, do you just want to wait another six months?" I said, "No, I would rather know now so we can start something if it came to that she had it." There have been so many new treatments that have come to exist since my sister was diagnosed. They only had one medication when she was diagnosed. She had to actually go from Utah to Denver to be put on Flolan. I just got put on Winrevair. I'm hopeful that with this one, it'll reverse some of the effects that pulmonary hypertension has done to my body. When my sister got diagnosed, she and her best friend who they met because of pulmonary hypertension, they actually started the support group here in Salt Lake. We would go to all of those support group meetings. Then, my mom and dad would go still to them, but I didn't go quite as much until my daughter was diagnosed. Then, I started going again. I got out of it after she did her lung transplant. When she passed away, I stopped going. When I got diagnosed, it's only been the last year that I started going back to the groups. Sometimes when we got drawn back in, it's more that you need that support. You need to know somebody else has this and they know how you're feeling. It may not be the same symptoms. One may be on oxygen, one may not be. One on IV therapy, one not. But you're still dealing with a terminal disease that you know you're not going to be here. I think that I try and I push that out of my mind. Sometimes, it just floods back. But with my friends, because they've been with me through all of them, because a lot of them we work together. So, it was from day one they were there with me, from my sister all the way up through when I got diagnosed, they were there. There's a couple activities that I really enjoy. I really enjoy golfing. We usually try and golf at least once a week when I'm feeling okay and can walk up a hill and not have to really stop and take a breath and stuff. Another thing I like to do is hunting. It gets me out into nature. I put my oxygen pack on and grab my bow and hike as well as I can and just look for those deer and elk and just have a great time. I'm pretty excited, because we didn't get to do it last year. I'm waiting to get my disability papers in so that I can actually hunt from the car and/or side by side that I don't have to really maneuver around as much. Sometimes it's a little difficult, but for the most part I can keep my oxygen level up and just rest when I need to. I have my husband with me all the time, so that's one good thing, because he's a really good support for, “Okay, I got to stop.” “Then let's stop.” Catch your breath, and then you just move on. That's one good thing about it. I'm really optimistic for the future. I live every minute for every day now. You take nothing for granted. I'm excited about all the new medications that they've got in the works and especially for this new Winrevair. I'm really excited they actually got me on and starting that and see how it goes. I'm Dawn Ogden and I am aware that I am rare. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . /episode/index/show/phawarepodcast/id/40047345

Episode 578 - Dawn Ogden 06/23/2026

I'm Aware That I'm Rare: the phaware® podcast

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