Natalie Roy - phaware® interview 496

Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. .

After her successful transplant seven years ago, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers.

My name’s Natalie Roy and I’m living in Victoria, BC, Canada. I am a double lung transplant survivor. I was diagnosed with pulmonary arterial hypertension in 2005, and I received my double lung transplant in 2017. I did this podcast shortly after my transplant about six years ago, and I just celebrated my 40th birthday and have celebrated my seven-year lungaversary. 
 
I started fainting out of nowhere when I was about 19 and was diagnosed in the emergency room in Vancouver. I was diagnosed with idiopathic pulmonary hypertension at the ripe age of 20 and started oral treatment and did quite well with that right up until about 2010. My disease started to progress and I went on subcu Remodulin. Shortly after that, I transitioned to IV Remodulin and had that journey for about five years and slowly declined and was listed for transplant in 2015.
 
 I did wait for about 19 months for my transplant and got to experience a dry run. For people who don’t know, that is when they call you and tell you that they have lungs for you and prep you for surgery and you discover that your lungs aren’t viable and they send you home. That was quite the experience.
 
I did quite well on my oral medication for many years. I was a chef for about 13 years. Just before I got listed for transplant, I worked pretty much my whole diagnosis. I did quite well on treatment. I participated in a lot of support groups. I found a lot of community amongst other patients in the PH world. I don’t think I would’ve survived without many of the other patients throughout Canada and the world. I think that community is really important when you are suffering.
 
It wasn’t until I started Remodulin that I actually really, I think that was the grieving process actually really hit me square in the jaw. I was like, “Wow, I’m really sick. I am connected now to a device 24 hours a day and I need support.” That’s when I reached out and found the local support group in Calgary at the time.
 
I was surprised with how almost desperate I was for that connection when I went to my first meeting. I didn’t realize how isolated I actually was and I was just kind of going through the motions and kind of really just living my day-to-day in denial of my disease and minimizing it, pushing through, and not really allowing myself to be somebody who was unwell. I think the support groups give you a space where you’re able to connect with other people who actually, obviously, understand what you’re going through. There’s only so much your caretakers and loved ones can relate. They sit beside you, but they don’t experience it with you.
 
The online is amazing, but if you can find other people in person, I think there is something really beautiful to going and grabbing a coffee with somebody or talking on the phone or meeting up with somebody. I did run the one in Vancouver with Tarya, which was really amazing, and that was one of the most enriching experiences that I think that to date I was involved in.
 
I think you need to be prepared to experience somebody else’s grief, that is part of showing up and holding space for somebody else and meeting somebody where they’re at, because somebody who potentially isn’t as progressed or as sick as you are, it could impact them. They might not be able to cope with it in a way that you’re able to cope with it. That was one of the things that I did notice, was that everybody has different coping levels. What you go through in your life, how you cope, how you move through things, some people haven’t gone through a lot of hardships in their lives and they get diagnosed with this disease out of nowhere and it completely rocks their world and they do not know how to manage. They find these support groups and they go there and their emotions are very big. I think that’s part of the rooms and part of the experience. If you are an empath or if you’re somebody who is sensitive, I think you do leave those rooms feeling quite exhausted. When you only have so many spoons, you definitely walk away feeling quite tired.
 
When I got the call for the dry run, I was absolutely terrified and not ready. Sitting, waiting outside of the OR and I realized that it was a dry run, I felt extreme relief. When I was able to go home to my dog and eat a sandwich and go to bed, I was like, “whew.” I was very devastated the next day when I had to wake up and I had to mix my meds and I had to live life unwell and hooked up to a machine and my line got infected and I just had to continue on living life with PH and being sick. But by the time that I actually got the call from my lungs, I was ready. I felt safe and I felt cared for, and I think that was part of it. For me, I had always told myself like, “No matter what,” and I think I said this in my last interview, “do it scared. If it’s your choice, doesn’t matter. If you’re scared, do it anyways.” Just get in there and do it, because it is honestly the best gift I’ve ever received in my life.
 
My initial recovery was quite difficult. I was in the hospital for about two months, but once I started recovering, that was it. I just wanted to live and my body wanted to live, and I felt amazing almost immediately. I was up and moving and working and back in the world.
 
I think the first two years, if I’m being realistic, were cautious. I followed all the rules. I had a few bumps. There was a few complications. My donor lungs had a few issues. I had to do a few treatments along the way, but for the most part, I think for anybody who has been quite sick and has progressively gotten more and more ill, you can’t compare. Once you have the opportunity to take full breaths and you’re not in chronic fatigue and you’re not actively dying, no matter what you have, it’s no problem. You’re up, you’re moving, and you can push through it. When I’m asked like, “Oh, how was it?” I can’t even remember what complications or what issues I had. I actually can’t remember, because it really feels like it wasn’t a big deal. It just really was such a blessing and such an honor.
 
I got married. I’m learning how to drive. I moved to cities. I’m doing things in my life that I didn’t ever think I would accomplish. I hit a milestone, which was turning 40. That alone feels like such a privilege. I think aging for people who are chronically ill is such a privilege. There’s so many things that have happened in the last seven years. I mean, every year, I think because my lungaversary and my birthday are a week apart, not even they’re a couple days apart, that it’s such a tender space for me and it’s such a dual celebration. It’s definitely a big honor to be aging. Every year, another year with my lungs, another year on this planet, another year celebrating and living and embracing life for whatever it is. Even the mundane stuff just feels like the best stuff.
 
For instance, when we got married, it was like I was having before my transplant, we were having this huge wedding, everybody was invited. I had this whole thing planned out. Then, I had my transplant and I was like, “No.” We eloped. It was my husband, it was me, it was my best friend, and that was it. We were in the forest. I didn’t want anything else. It was interesting how before everything had to be big, involved, passionate, intentional. I absolutely live my life with intention now, that is the name of the game, but I feel like there was a desperation attached to everything I did before. Now, there is an ease, if that makes sense. What I get to experience now, even if it’s a fraction of what I tried to cram in before is enough based on the quality of my life. It doesn’t matter how much I get to do now, it’s how good it feels.
 
Right now, I changed careers, so that’s been very all-encompassing. I went from working as a chef and now I am working in a corporate office. That’s been overwhelming at times. I feel like an imposter coming from somebody who couldn’t walk from the bed to the bathroom. Now, I’m running a little financial center and that feels strange to me, and sometimes I’m like, “How did I get here?” So I feel like that at the moment is like I am upgrading my education, which wasn’t an option for me.
 
Yeah, right now I’m 40, but I feel like I got sick so young and then I was sick for 19 years. I got diagnosed 19 years ago, so a big chunk of my life was being chronically ill. I wasn’t able to make plans for myself, because my body was like, “No, we don’t get to do that.” Anytime I tried to make plans for myself, I would get unwell or something would shift and it just wasn’t feasible. So right now, I am working. Right now I’m trying to upgrade my education. We are buying our first vehicle and we joined a softball league. Who does that? I joined a softball league and played a season, and we got third. We went to the playoffs. I did a sport. I’ve never played a sport in my life. I’ve been sick forever. Those little things. So yeah, I don’t really have any plans. I really am just going with the flow, but the flow feels pretty good.
 
I stayed connected to the PH community throughout. I didn’t lose touch at all. I do feel like I didn’t stay as closely connected as I wanted to. Going to the PHA Canada conference this year reconnected me closer, which felt really good. I have linked back in a little bit closer. I’ve joined their support group, so I’ll be going to that. I have my friends in the community and keep in close contact with them, but I really would like to do a little more volunteer work. I’d like to participate a little bit more in what they got going on with PHA Canada, but I feel like that’s where I want to put my energy moving forward, because that’s where I have the energy to do it.
 
I had a hard time where I had identity crisis because I didn’t know where I fit into the community anymore after my transplant. What I did feel going to the conference this year and the feedback I did get was, “It’s really nice to see you here,” because a lot of transplant patients kind of move on with their life and they don’t really stick around, which is a beautiful thing, you go live your life. But those people saved my life and kept me alive and filled my cup and continue to do so. They are a family to me. I want to do a little bit more where I can.
 
My name is Natalie Roy, and I’m aware that I’m rare.

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