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.

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