Allison Fenstra - phaware® interview 506

Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother.

My name is Allison Feenstra. I’m from a tiny town called Nobleford. I was born and raised there, lived there all my life. My whole family’s still there. I came into the world of PH in 2019 when I was diagnosed. They actually found it because I blacked out on the sidewalk and somebody found me there. They had to bring me to hospital. I was in and out of hospitals for about a year before they figured out what was wrong. It was a lot to cope with, because I was in school to get my education degree. I had to stop that, because I wasn’t able to continue and work at the pace that I wanted to. I wasn’t able to work. I basically had to quit my job. I moved back in with my parents. I was definitely very unsure. I had no idea how I could go from being completely healthy and running 5K races to literally not being able to walk up the stairs. I went from one normal to a completely different normal in the span of three months. 
 
It all spanned from my doctor putting me on birth control, which caused the clots, and then the clots turned into the scar tissue, which turned into the pulmonary hypertension. I was in the 1% of people that happens to. It was one thing from being completely normal to completely rare really. I got pneumonia. It would’ve been November of the year that I was diagnosed. They had to put me on prolonged bed rest. Little did I know that the birth control I was on, one of their side effects was blood clots if you were on prolonged bed rest. Nothing was in the pamphlets that I was reading when I was given it, so I had no idea that this would happen.
 
Then, I started getting more and more breathing issues and my doctor was like, “Oh, it’s just asthma. It’s just this. It’s just that,” but it actually turned out to be clots that had formed in my lungs, because of the pneumonia, because I was on prolonged bed rest while on this birth control pill. Like I said, I had to quit my job. I was working in a daycare at the time. It was deemed that I was unfit to work. Because of everything that I was going through, I was traveling to one from Calgary every six weeks normally. 
 
I couldn’t do the things that I wanted to do in life anymore. My life had completely changed. It wasn’t something that I was expecting at all. I think had I had some sort of, “Oh, well, I was sick,” and then it happened instead of rather than I was fine and then I wasn’t. It was a lot for me to deal with, especially personally. I was like, “I’m a young woman. I still want a family. I want the rest of my life,” and now here they’re telling me, “Well, you’re going to have this forever and you’re always going to not be okay. There’s nothing that we can do that’s going to 100% cure you.” 
 
I was in university for my education degree. I wanted to be a teacher. I wanted to work with kids. It’s something that I had always known I wanted to do. I was in year three, so it’s not something that I could just stop and then go back to, because you miss all of that. You have to do your practicums. You have to go into a school. You have to do all of these things in order to continue. It’s not something I could just be like, “Oh, well, I’m kind of better now so I could go back to that.” I had to completely reroute my life.
 
After it all happened, I just laid low for a bit. I couldn’t work during COVID because of it. Now, I work full time. I’m a supervisor at my job. I honestly don’t know where I would be if it wasn’t for the team of doctors I had. They did put me through my pulmonary endarterectomy in the middle of COVID. Going out there by myself was completely weird for me, because I had nobody that I could have with me. I had no support system. Now, I’m in the workspace, but before that, I didn’t do anything. I very rarely left the house, because I was so worried that, well, what happens if I have a drop out while I’m with somebody and they don’t know how to deal with it? I was very cautious. Anytime I went out, I was with my family. If I didn’t go out, it’s because my family was staying home.
 
I found out I was pregnant with my daughter eight months after I had surgery. My pressures were kind of back to something that wasn’t super bad but not advisable. They told me that there was a very high risk that I would end up hospitalized for my pregnancy. Because of the blood thinners I was on, they actually had to put me on injections, because the warfarin isn’t safe for kids. Especially when you’re pregnant, it’s not safe for them. because it can cause deformities and stuff like that. I had to stop a couple of my other medications that they had me on, because they wanted to make sure that my pregnancy stayed viable, because that was something that I told them I wanted. I told them there was no negotiating for that. I’ve always wanted to be a mom, and I wasn’t going to let this stop me from that, especially because I am so pro-life. I was like, “Why would I stop something that I have the power to say?”
 
We went through it all. I was very high risk. I saw OBs in Calgary, I saw OBs where I lived. It was constant doctor’s visits. For me, it was normal. It was nothing out of my normal. It was just now I’m growing this extra life. I went through the pregnancy. It was pretty seamless except for a couple things that they had to rework. My daughter was born exactly a year after I had my surgery. It was honestly something I never thought I’d have, because they always told me, “Now, you have to be super careful.” But I also wasn’t allowed to be on birth control, because of the hormones that they say caused the clots, so it was like, “Oh, well, I’m pregnant and I’m not getting rid of the kid. She’s mine and I have a connection to her, and I’m not going to let anything stop me.”
 
I’m a very resilient person, so for them to tell me basically, “This could make you worse,” I was like, “Well, if that happens, then it happens, but I’m not going to stop what I want in life because of something that I had no control over. I have control over this, so this is what I want.” Now I have a healthy, happy three-year-old, so I don’t think I would’ve changed anything that I did. 
 
I waited almost a year for them to get back to me about this surgery. I found out that my pressures were high enough that they figured she’s a candidate. If it’s going to help her, let’s do it. The pulmonary endarterectomy, the way that they’ve always said it to me is it’s basically open heart surgery but on your lungs. They go in, they go into your lungs. They basically scrape out the scar tissue that’s there, then they try and make it so that you have more lung capacity than you did before.
 
My lung capacity at the time wasn’t great, so they did extensive amounts. Again, I’ll never be 100%, but even the amount that they got out, they didn’t think they would be able to get out as much as they did. I was super scared going into it. It was like, “Well, I don’t want this scar for the rest of my life.” I don’t want to have to tell people or have people ask me all the time. They actually let me go home early, because they say it’s a two-week recovery time in hospital. They sent me home in a week and a half, because I went above and beyond what they wanted because I wanted to get home. I didn’t want to be stuck there. I hate hospitals, so the fact that my normal was constantly going to hospitals, it was something that I was like, “I’m going to get out of here on time. I want to go home. I want to be with the people that have supported me through everything.” Then, I got to go home and my dad and my little brother were there for me.
 
My dad came, flew out to Toronto because he had to fly back with me afterwards. They just poured everything into me. My little brother is 17. He’s still in high school, absolutely adores Aria. We only live four blocks away from each other. Normally, when I work, she’s with my dad and my stepmom all day. They take care of her. Every once in a while, if I work late, they keep her overnight. That way, I’m not having to wake her up. My mom and I are super close. She was the first person that I called when everything happened, but my dad was the one that was always with me in hospital.
 
My grandparents, actually, have also been there for me all the time. Our family’s very close-knit. We’re a very family-centered family, which I love. I love that now I get to raise my child in that too, but my family was one of the biggest deciding factors for me through everything. It was always, “Oh, well, something’s wrong. We need to do something.” The primary people that took care of me during all of this was my dad and my little brother. My mom wasn’t at home a whole lot, but when she was, she was there. 
 
Having lived away from home for so long, it was something that I realized I’m allowed to rely on these people again. I didn’t have to be alone. For the first little bit, I kept to myself. I didn’t want anybody to worry about me. I didn’t want to bring anybody else into what I was going through because they didn’t understand. They’re like, “Oh, well, you don’t look sick so you’re not sick.” It was like, “Well, you can’t see the internal struggle.” I’m like, “But there’s definitely a struggle. It’s like my lungs are pretty much not working.” 
 
I stuck to my family, because they were the only ones that understood, because they were there when everything happened. I’ve always been a super independent person, even young pre-PH. I’m the middle child. I’m the only girl. I had to learn how to do things on my own, because my older brother wanted nothing to do with me. Once my little brother came along, my parents shoved me to the side, because I wasn’t the baby anymore. I learned from a pretty young age that if I wanted something, I’d just do it myself. 
 
Going into adulthood, it really strengthened itself. Before, because I moved 13 hours away from home, I was then essentially alone for my first year out of high school. I was like, “I don’t need anybody.” But then having to backtrack from where I was, it was really hard to let people in, because I was so used to doing everything on my own. Having to rely on somebody else after I was diagnosed with PH and basically going from doing everything for myself to not being able to walk up the stairs by myself was a complete 180 in my head. I had to retrain myself to be okay with asking for help, because it was never something that I enjoy doing. I liked doing things on my own. 
 
I have goals to be an assistant manager where I’m working now. I absolutely love what I’m doing, and I don’t think I’m going to change that. I just want to be able to live my life as normally as possible at this point in time. I’m not going to let anything slow me down. I’ve already let it happen. Now, it’s just more so focusing on my life, and making sure that my daughter’s taken care of, and being able to give her that life that I want to. 
 
Being able to lean on the people around me a little bit more is definitely something that I’ve done a whole lot more now than I ever did and being able to just focus on life after it all now, because my doctors say I’m getting better. I’m not getting worse, so I’m progressing rather than regressing, which I loved hearing. Being able to go back to that normal life where, hopefully, I can do the things I used to do. I used to love being outside and I used to love doing all the things outside that I used to do. I just hope now that I get to show Aria all of those things too. 
 
Don’t shut down. I shut down, and it was something that I never should have done. I pretty much shut out the world. I hated what had happened. I hated the doctors for putting me on the thing that caused my condition. Lean on the people that are around you, because if I would’ve done that from the get-go, I don’t think I would be in the situation I was in when it happened. Just be able to try and adapt. Don’t close your mind off to what everybody is telling you. Adapt your mindset to what you’re going through, because it’s going to be different for everyone. You’re rare, but that rare also makes you special and it gives you something to live for, because eventually, you could get better and you could live to be able to tell your story. It might bring somebody else hope that they’re not at rock bottom. 
 
My name is Allison Feenstra, and I’m aware that I’m rare.

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