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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Tarya Laviolette - phaware® interview #136

Mar 13, 2018

Tarya Laviolette is a pulmonary hypertension patient from Canada.  She is a former Community and Relations Coordinator for Pulmonary Hypertension Association of Canada. Tarya now serves as a Research/Health Policy Officer for the BC Nurses’ Union. She discusses how her nursing team is absolutely integral to her care.

My name's Tarya Laviolette. I am a PH patient living in Vancouver, B.C., in Canada. I was diagnosed about five, five and a half years ago.

I've been exercise intolerant for just about as long as I can remember. I wouldn't be surprised to find out that I've had some kind of underlying disease since I was a kid. I used to carry a tensor bandage in my backpack because if I found out that we were going to go for a run in gym class, I would just slap it on my ankle and fake a twisted ankle so I wouldn't have to go for the run, because I was embarrassed, because I couldn't keep up with any of the other kids. It never occurred to me that it was a medical issue. I just thought I was out of shape, which is a bit ridiculous, when you think about it, for a 14-year-old girl.

I just adjusted my life for most of my life, and then when I was 30, I got pregnant with my son, and I was so lucky. In retrospect, so incredibly lucky. I didn't get diagnosed in pregnancy. I had a super lovely fantastic pregnancy, and I know that it would have been a lot more stressful had I got that diagnosis. Like I said, in retrospect, it turned out well. I survived. My son survived. We both came out healthy, and I'm very aware that that's not the reality for a lot of people, so I recognize how lucky I am to be able to parent, to have a son, and also to have survived so well through my pregnancy.

Then after he was born, I kept asking for pregnancy tests. I kept feeling pregnant. A lot of those symptoms of, you know, a little bit of shortness of breath, just feeling fatigued all the time, they just didn't go away. I had a very astute family doctor and she heard something in my heart, and she sent me for an echo, and within ... yeah, I had my first echo on a Friday, and the cardiologist called me on Sunday and asked if I could come in the next day, and that's where that whole process of bam, bam, bam, different tests and everything started.

Then I got referred to the pulmonary hypertension clinic in Vancouver, and got on therapy, and did really well for a good chunk of time. I think like a lot of other patients, I've had ups and downs, things like that. Then this last year, ended up having to transition onto IV therapy as well.

We all know this is a rare disease, and I'd never heard of it before, and I didn't know anyone who knew anything about it. One of my first questions at the PH clinic is where I could find a support group, and there wasn't one, which I found was really unfortunate. We have, in B.C., in British Columbia, something called the B.C. Pulmonary Hypertension Society that was started by a woman living with pulmonary hypertension who lived on Vancouver Island, which is about a two hour travel for me. There was sort of a group that was still meeting on the island, but there was nothing locally here in Vancouver.

We did have the Canadian PH Association, which happened to be based here, and so I went in there to see if I could just find people who I could relate to. I had a really nice long chat with the national manager at the time, who was Angie Knott, who now is one of my closest friends. It turns out we have kids the same age, and I'd actually met her husband before at a play group, randomly.

I ended up doing some volunteer work for PHA Canada, and starting a local support group here in Vancouver. Right before I was diagnosed, I had just finished a Masters in Public Health. I had all these advocacy skills. I had a lot of passion, and I really wanted to do something, and I ended up going to work for the Canadian PH Association for about a year. Probably one of the best things I could have done for myself, for my own health, going back to work, having the ability to go back to work, and feel really productive and really make a contribution to my own community. I was really fortunate to have that experience.

I ended up getting an opportunity to go work full time as a Research and Health Policy Officer for the Nurses' Union here in B.C., so I moved on from PHA Canada. My involvement has waned a little bit, but they're still very near and dear to my heart.

When I worked for PHA Canada, my role was Community Engagement, and I used to think Mark Zuckerberg on the daily. I was so grateful for facebook. There's something very powerful about being able to connect with people, even if it's virtually, when you have a rare disease. I wrote my Masters project on peer support, and this was before I got sick. The "I get it" factor, I think, is absolutely tremendous. Having the ability to connect with people online? Huge.

I took a job with the B.C. Nurses' Union, and I work in research and health policy, and it's a really good fit for me and for my skill set. The PH connection that I have is that it's really gratifying for me, in my work, to be able to serve a community that serves me so well. I love my doctors. My doctors are great, but probably 90% of my care is delivered through my nursing team, and my nurses are absolutely fabulous. I just would not get by without them. They're absolutely integral to my care.

It's really nice for me that I can use my skills to give back to that community. When I left the PH Association, I lost that feeling of being able to contribute to my community, but this way, I get to contribute to the community that keeps me kicking.

I'm a research nerd by background. I absolutely love research. I'm not a bench scientist, so I've not worked in clinical trials, that kind of thing. I've done the sort of social research, mental health research, but I think there's a huge amount of value in both of those kinds of research for pulmonary hypertension. When I was diagnosed, I have research literacy, so I dove right into the research around pulmonary hypertension pretty quickly, and I was lucky enough, through being an employee at PHA Canada, to go to conferences, and hear some of the latest, greatest research happening in this area.

I was really excited to find out that there's a tremendous amount of research happening in pulmonary hypertension, and a huge interest in the research community. I know that at some of the Thoracic Society conferences, pulmonary hypertension presentations are among the most popular, and among the most well-attended, because there is a lot of momentum in this area, and there's a lot of new treatments coming out, and a lot of new theories of the disease, which I think is really important, right? That way, you have a branch of research into new drugs and things, but you also have these bench scientists who are really working on that, what is it that's happening? I think maybe it's because there's still the opportunity to be the person who gets it, the person who figures out pulmonary hypertension, so there's still lots of interest, and lots of excitement in that area.

That's where our cure is going to come from one day, right, these really motivated, excited, researchers, bench scientists, working with the microscopes, and working with the stem cell research, or progenitor cell research, working at finding new theories of the development of the disease, and really figuring out what's happening. Transplant techniques, I know there's a lot of research in that area. So I find a lot of hope in that, and I find that that helps me to move forward, and again, want to be able to do all of those sort of regular life stuff, knowing that with all these people in the background, working on this, that that's going to be the thing that keeps me going for a good long time.

I think one of the reasons that I had a really easy time of staying positive was because I was a new mom. Despite the fact that I was going through this really rough time in my life, and I had just lost my dad right before I was diagnosed, it was a really rough time, but I had this tiny baby who had no idea. He didn't know the difference, and he still needed to be fed and cleaned and played with, and he was still super giggly, and so in the beginning, when I was still trying to adjust and cope with this new life, and this new diagnosis, he saved me.

When I did go back to work, I found it very, very helpful. I feel at my best self when I can make a really meaningful contribution to something, when I have something to work towards, and especially because I do, I still have a lot of difficulty with physical tasks. I have an amazingly supportive partner. He works part time and then does all of the domestic duties. He does all of the cooking, all of the cleaning, and a good chunk of the child care, especially when our son was younger. All of the physical aspects of that, he just took all of that on.

I can do really well at a desk, so things that my skill set allows is that I can make that contribution in a different way. I don't need to be bending over to do the laundry, because that's really hard for me, so that has allowed me, I think, to be mentally healthy healthier as well. I think if I, I didn't feel like I was making a contribution, that would be really difficult for me.

I did go off work for a couple of months when I transitioned to IV therapy, and I found it really difficult not having that positive contribution to make, so I ended up working up from home some while I was off, because I find that very helpful.

Now, I don't have to fake it anymore. Getting a diagnosis like this is devastating for sure, but it's also a little bit freeing in that I know why I had so much difficulty. Before, I was embarrassed about it, because I didn't know what it was about, and I assumed it was my fault. I assumed that it was because I wasn't working hard enough. I didn't go to the gym enough. I know that I'm not going to run a mile. On good days, I can still, on a flat surface, walk for a good chunk of time, and I can still play with my son. Those are the things that are more important to me.   

My name is Tarya Laviolette, and I am aware that I'm rare.

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