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.

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