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Gerry Langan - phaware® interview 372

Jun 21, 2022

Gerry Langan (@itsgerrylangan), pulmonary hypertension and heart failure patient advocate, discusses how sharing her story and leveraging social media is how she took back power in an uncontrollable situation after being diagnosed with a disease that is progressive and uncontrollable. 

Gerry Langan:
Hi, my name is Gerry Langan. I am 32 years old. I live in Satellite Beach, Florida. I was diagnosed with pulmonary arterial hypertension, the idiopathic version in 2018 and severe congestive heart failure as a secondary result. In 2018, my husband, who is in the military, was reassigned to Colorado. While we were in Colorado, I started having side effects and I guess, symptoms of what would now be considered PAH, but at the time it looked a lot like postpartum stuff. I have twin four-year-old boys. At the time, when we moved to Colorado, they were about six months old.

The symptoms started showing up right when we got there. It looked a lot like altitude sickness, being short of breath, tired with exertion, headaches and that kind of stuff. It looked a lot like dehydration and altitude sickness. I was just dehydrated and having altitude sickness for six months. I was like, "Well, this is so weird," because my husband and the kids had adjusted. I started thinking, "Well, maybe I'm just out of shape." There are a lot of things that PAH has that look like other things, which makes it so hard to diagnose. I was having extreme fatigue. I was a having hard time walking from my car to the front door, all of that while carrying twins.

Everything was just compounded on top of each other. I was just sluggish. Then I started thinking, "I haven't worked out since I was pregnant. Maybe I'm just out of shape." My husband told me I should probably start working out. So I started working out and nothing got better. He actually left for about five weeks. While he was gone, I gained 20 pounds while working out. I was like, "This is the reverse effect of what I thought was going to happen." I told him that I was gaining weight and I thought, "Maybe I'm pregnant," because these things also look like pregnancy -- shortness of breath, chest pain. Now I'm gaining weight. I'm swelling, being tired all the time. It was just weird. There were just a lot of symptoms that all ran together. I was also having lots of bad allergies. I was having sinus infections. It was a big struggle.

When he came home, we left for a wedding in North Carolina at sea level. When we got to North Carolina, I immediately felt like I could breathe a little better, but I was swelling pretty significantly in my legs when we got off the plane. My dad actually pointed out that they were really big. So I made a doctor's appointment, because my parents were on my case the whole time. I got back to Colorado on Monday and I had my appointment. The blood work that the doctor took wasn't going to come back for 24 to 48 hours. Then Tuesday morning I woke up and couldn't get out of bed because my legs were so swollen. They were like tree logs. I actually fell trying to get out of bed. I told my husband, "Hey, I think I need to go to the doctor." He was like, "But you were just out the doctor." I was like, "I can't even walk." So I actually drove myself to the ER. It was crazy. It was just a whirlwind after that.

Lucky for me, I went to the ER at a clinic that was a sister clinic to Denver's hospital, which is one of the best pulmonary hypertension clinics in the country. So they kind of knew what they were looking at, so I was very fortunate in that. But at this point it had been going on for almost eight months. Yes and no, it was kind of quick. But at the time when I finally went to the ER, they did diagnose me in within the week. I got admitted when they figured out what they thought it was, they did a right heart catheterization. They didn't wait for any of that stuff, which I'm very thankful for. Then they misdiagnosed me with mild pulmonary hypertension and mild congestive heart failure. They did pull two and a half liters of fluid out of my stomach, so that was crazy. I lost a lot of weight very quickly and I started feeling better. Then they said, "We're just going to send you to the specialist in Denver and you can see how it went." They readmitted me, redid all the tests and came back with, “You actually have severe congestive heart failure and severe pulmonary hypertension. If you don't start treatment immediately, you're going to die.” I was like, "Sweet. So I guess we're going to start treatment?"

So I started IV treatment in the hospital. It kind of sucked, because at the time we didn't know that I was allergic to everything. They cleaned me with ChloraPrep. They put a Tegaderm on me and all of those things immediately started a reaction with my IV. After that, everything just kind of went downhill with IV. I did get better because I was getting the medicine, but I was having external problems because of my skin. I actually ended up on the IV. Then a week later after I started IV, we moved to Alabama. So my doctors were like, "You can't just stay? You can't just stay here? We're trying to take care of you." I was like, "I have to go. My husband just got sent to Alabama. We have to move."

So we moved to Alabama and I was in the hospital six times in a year, every other month for a couple of weeks with line infections. Just so many issues with my line. I just couldn't catch a break when it came to the line. I got better. My heart got better and everything started looking better, but the line itself did not do well for me. So they moved me to an oral medicine. After 10 months on the oral, I actually failed it and had to go back to pump. So now I'm on SubQ.

We've moved a lot. We've been married for seven years and we've lived in eight houses and four states. We had to move to Florida right in the height of 2020. My husband had just finished flight school. I transferred to Mayo Clinic and they've been great, but it was right in the middle of COVID, so I was doing telehealth. Trying to start care and then trying to end care in Alabama through telehealth. It was a really weird transition time. But luckily Mayo is great. I didn't have a lot of trouble with the switch to them. Trying to get away from Alabama was the difficult part.

I have a really close relationship with my doctor. We've done a lot of legislative work together too, which has been really awesome. They have been really big supporters of me and I really appreciate that. I haven't always had the best care. Denver was great. I have a very close relationship with Denver's team still. They're my second opinion all the time, which I think probably contributes to why I'm doing well. My doctors still work together, which isn't always the case when it comes to doctors. I have been feeling a lot better and being at sea level is helping.

Now I'm on a clinical trial also. We can only guess right now, but we think I'm getting the drug and that has been helping. I got a good report a month ago when I went in for my echo. There's been a lot of talk about Sotatercept being a new, big drug in PAH. I had heard it on social media. I'm a social media influencer, I guess. So I've heard a lot of people talk about it. That has been really cool to hear it from other people who have been on trial. I'm on the third phase of trial. So I know people that have been on first and second phase, and I've heard amazing things about it.

I actually started to ask my doctor about it, but he got to me before I got to him. He was like, "Hey, if you haven't heard of this trial, we're thinking about starting it. We think that you're a good candidate," because now I'm stable. Being stable obviously is a big deal to be on a trial. Then, while I was considering it, obviously there's a lot of things that go with that, having kids, having a husband that's gone all the time. Also, we live two and a half hours from clinic so I travel five hours round trip. So all of that stuff had to factor into clinical trial.

My doctor in Denver actually called me up and said, "Hey, if your doctor hasn't heard of this trial yet, it's really important and you could benefit from it in the stuff that we've seen." Because they were phase II and then Mayo is phase III. He was like, "In phase II, our patients have been getting a lot better and we think that you would be a great candidate for it and you should ask your doctor about it.”

So because both teams decided that it would be really good for me, I was like, "Sure, I mean, I guess we can do it." I started in January. It's a 21 month trial. There's two phases to the phase III. There's an A and a B portion. There's the short term, which is six months. I'm coming up on my six month, obviously. If I do well or if I want to continue, it goes on for the next 12 months.

When I was diagnosed in 2018, I was in the hospital in Denver and had just started IV. I had never heard of this disease and it was really scary. I was a freaking disaster. I was crying all the time. I was in the hospital not sure what I was doing, but my husband was taking care of our kids. We're in Colorado, we don't have any family or friends. I was just by myself and I was crying. Then the doctor came in and said, "There's a girl that lives here who has the same story as you. We told her about your story and she was very compelled to come meet you." They said, "Do you want to meet her?" I said, "Sure." She came in and she had been on IV for two or three years. She just came strolling in and sat down and answered all of my questions.

At the time, I don't even think she or I realized how important that was going to be to me. I think that seeing somebody be so normal was really hopeful for me and it gave me a lot of mental piece that if she could do it, I could do it. That's just my personality. If she can do it, I can definitely do it. She's so kind and humble and her story was very similar to mine. She almost died, and then IV saved her. She told me a lot of tips and tricks about how to wear my pump, how to dress my dressing, things that just doctors couldn't tell me about practical use.

So I started sharing my story because we were in Colorado and everybody was asking across the country, "What the heck is happening? You're in the hospital." I just didn't have the mental capacity to respond to people. So we were sharing originally on social media so that people knew what was happening. Then the next thing I knew, people started asking. People with pulmonary hypertension started finding me and asking me, "What are you doing? How were you diagnosed? What were your symptoms?"

When I started sharing it, I started realizing that I really wanted to be that girl for somebody else. The girl that gave them hope that they could be on. I'm on chapter 50 of my story. I was on chapter one at that time and it was really hopeful to see somebody on that chapter 50, knowing that there was more to what was going on at the time. So I started sharing my story, hoping to be a lot like her, because she was so brave and she came in and she was really vulnerable and shared the hard stuff with me. I started doing that publicly, because I started seeing a need for it online. Social media tends to be pretty negative. Facebook was really freaking scary. Facebook was about as scary as Googling the disease. I just didn't find any hope in those Facebook groups that were supposed to be hopeful. So when I started sharing it on Instagram, it kind of just caught fire. Now it's crazy.

It's been really cool to share my tips and tricks from my lived experience, because nurses and doctors only learn what they learn through a medical book. They don't get to practice that every day. Practical stuff has been really cool to share, but then it's also been really nice to see sharing on Instagram is saving people's lives, which is so nuts. I get some really cool stories and people will contact me and say, "Hey, I got diagnosed. I knew something was wrong, but it took your story pushing me over the edge to go to the ER," or something like that. It's really crazy that social media has that kind of power. They talk about it having power, but you don't even see it until people start telling you their stories. This weekend I got to meet a bunch of people who were diagnosed around the same time as I was, or using the stuff that I put out there, which is crazy.

Social media now has spiraled into one of those things where it's opened a lot of opportunities for me. I've been doing a lot of work with pharma on the patient side, just updating all their stuff. I come from a marketing background so it's like a double-edged sword, right? So they get to use me for both things. I've done a lot of legislative stuff with the Pulmonary Hypertension Association and a couple of other organizations trying to change some laws that we've come across that have affected us personally, especially with my husband being military.

It's been really cool. It's been crazy. It's been a crazy experience. But I say it all the time, I think PAH has given me more than it's taken and it's been a really cool ride. It's been interesting. I mean, it has had its highs and its lows, but it's given me a lot and I've gotten a lot of cool experiences from it and I've met a lot of really cool people from it.

The one thing that I say to everybody is that sharing your story is how you take back power in an uncontrollable situation, being diagnosed and having a disease that is progressive and uncontrollable. The only way that you can take control of the situation is how you respond to it. So sharing my story has been one of those ways. Even though I'm not exactly in control, I do feel like I'm more in control, because I've changed the way the narrative looks. I don't want to be just another sob story. I don't want to die and feel like I didn't do anything with what was given to me. If anybody out there is not sure or feels like they're complaining when they share their story, I encourage you to share because raising awareness means that people are out there looking for stories like yours.

I'm Gerry Langan, and I'm aware that I'm rare.

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