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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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Brooke Paulin - phaware® interview 201

Oct 26, 2018

Canadian Pulmonary Hypertension Patient, Brooke Paulin discusses her road to PH Diagnosis.

My name's Brooke Paulin. I am from Mississauga, Ontario, just outside of Toronto. I was diagnosed in February of 2014, so I guess four and a half years ago, just shy of five.

I was a competitive athlete growing up. I represented Canada in figure skating, I was a pair skater. So obviously aerobic capacity was pretty much second to none. I "retired", when I was about 21, and it was actually at that point, I'd given up my relationship with the gym, because having been forced to go to the gym my entire life, once I was no longer forced, that was kind of that. But shortly after, I decided to do a charity bike ride with my mother to raise money for palliative care at a local hospital where we live for palliative care. And I just couldn't keep up for the life of me. Biking was ridiculously hard. And I still didn't really think anything of it. I thought I was just out of shape, and this is what not going to the gym does to somebody. And it took about six months for me to realize nope, something is seriously wrong. This is not normal, I should not be short of breath. Granted winters are cold in Toronto, but I should not be short of breath walking across a parking lot in the middle of winter. Not to the extent I was.

I actually ended up going to a walk in clinic, thinking I was just going to have pneumonia, they were going to diagnose me with some sort of maybe viral infection, something affecting my lungs. [That I would] take some sort of medication and I'd be better. Sure enough, I was actually sent to another local hospital, and admitted there to cardiology for 10 days. I have a lucky story, it only took 10 days for me to get the proper diagnosis. I know, unheard of. But that was that. 10 days in cardiology, a referral to our local pulmonary hypertension clinic, which happened a week after diagnosis. And that was where it was confirmed.

During my stay in the hospital in cardiology, it was really just like a fog. I remember being there, I remember medical jargon being thrown around, but I don't remember them ever saying pulmonary hypertension. I know that they did, because both my parents heard it there for the first time. But I have no recollection of that. I did find out actually during that stay, I also have a heart defect. I have an ASD, so that I've obviously had my entire life. But that I recall from that conversation. And then again, I remember a week later going to the clinic at Toronto General hospital, and that's when I remember hearing pulmonary hypertension for the first time, and really understanding, (well maybe not understanding, because I don't think you can understand much in that moment), but hearing it and absorbing it, and honestly, I felt like I was hit with a Mack truck. I didn't understand how two years prior, I was super healthy and super active, and could run for an hour straight and be fine, and then two years later couldn't walk across a parking lot. Literally, the best way I can say it is I felt like I was hit by a Mack truck at the time.

Fortunately, I've always been that kind of person where I want to be busy 24/7. I don't do well with down time, and I think that's actually been my saving grace. Post diagnosis, I jumped right back into work. My boss at the time was super understanding. He's still a mentor. I no longer work for him, but he is a still a mentor of mine in my professional life, and now personal life, obviously as well. But he was super understanding, made allowances for me in the sense that, not only is it physically challenging, it's emotionally challenging, and especially in those few months following diagnosis, there were days where it was just emotional, and sometimes you can’t hide that.

I did my best, but he made allowances for me to take the time when I needed the time. And I actually think that was the best blessing, the best gift anybody could've given me, because that allowed me to live with the diagnosis, figure out what this new normal was going to look like, but continue to work. Which again, for me was what I needed, because keeping busy is I think what helped me actually move into that new normal, into the understanding, into the acceptance almost, and then figuring out this is the hand of cards that I was dealt. How do I now move forward and make sure that I am still living a fulfilling life while taking care of myself and this disease, and doing what I can to raise awareness. Again, I've been super fortunate. I've been pretty stable for the last four and a half years. I'm on a dual therapy, but I know people aren't that lucky. And so what can I do as well, that helps others get the same access and same advantages that I've been given since diagnosis?

My parents, bless the hearts, have jumped in right alongside of me. My mother is actually a huge advocate in kind of the political side. She goes to Queen's Park, which is really the political headquarters in Toronto. She regularly attends open sessions. Now, because of the advocacy work she’s done, she's also been invited to advisory committees. We're trying to do the national pharma care in Canada, and she's actually been invited to speak and kind of share her thoughts, which is amazing. My dad, as well as my mom, they host a yearly golf tournament in Brampton, so again, just outside of Toronto, where we kind of try to get people together. And whether you golf or you don't, come out for the day and have a great time. Let's raise money and awareness. Next year will actually be our fifth year doing that.

And then just little things as well. We all drive with our bumper sticker on the back of our car. We all wear our pulmonary hypertension bracelet, our purple bracelets, on a daily basis. Like I said earlier, I no longer work for the boss that was super understanding post diagnosis. I work for someone else now. I work for a different company now, and they don't know about my pulmonary hypertension yet. That has been my decision, that has been my choice. But previous to that, all of my employers have known. It's doing what we can to try to get our voice out there. And thankfully my parents are much more vocal about it than I am. But I think we make a good team.

I think recognizing again, we hear it a lot, but that your life is going to be different, but it's going to be a new normal. You're going to acclimate to whatever that normal is, and it may not look like what your life looked like two years prior, but it doesn't mean that it still can't be fulfilling, in whatever capacity that is. So for me, that was to make sure that I could still work and stay busy. So not necessarily in a I'm making money kind of way, but whether it's volunteering, whether it's some hobby, if it's knitting. I think keeping yourself busy, that helps your mental health, so just stay busy.

Stay talking. What I did, and hindsight 20/20 I wish I didn't, I pushed some of my friends away. And in those early months, you're trying to understand and wrap your head around this new normal, and this disease that you've never heard of. Now how do you bring your friends in to that too? Into your lowest moment, how do you bring your friends in, and ask them to understand when you're not understanding? Hindsight 20/20, that's the worst thing I could have done. Thankfully, they have all been very understanding, but hindsight 20/20, don't push people away.

That's another big thing, is it's easy to kind of isolate yourself, and think that nobody'll get it, and you're along in this and nobody'll understand. You'd be absolutely wrong. Let people in. And not necessarily into the depth of what you're thinking, especially in those moments, but keep them in your circle, because at the end of the day, that support system is what's going to move you forward, as well.

My name is Brooke Paulin, and I am aware that I'm rare.

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