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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!

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Jane Sernoskie - phaware® interview 423

Jul 18, 2023

PHA Canada Patient Ambassador, Jane Sernoskie discusses her pulmonary hypertension diagnosis and becoming a mom through surrogacy.

My name is Jane Sernoskie. I'm 32 years young. I was diagnosed with idiopathic pulmonary arterial hypertension in 2016. Luckily, it was a very fast diagnosis. I think within a week I had a plethora of tests and it was confirmed. The first doctor that saw me, he had me doing a stress test on a bike, and within 30 minutes he pulled out his phone and typed in pulmonary hypertension, showed it to the nurse, and he said, "I think this is what she has." It was confirmed that day with a echocardiogram that there was pulmonary hypertension. The following day, I was called by the Ottawa Heart Institute, the Pulmonary Hypertension Clinic, and I was brought in for a confirmation of that diagnosis.

I was an athletic person from the get-go. I was into sports like soccer, hockey. It was during that summer that I was bringing in some furniture that I noticed I was severely out of breath going up a flight of stairs. Bending over, I would be out of breath. It was really my mom who advocated for me to check into this. So we went to the family doctor and asked to carry on with another doctor to do some more testing, and from there I was also asked to continue on with a stress test in November of that year. So from all that abnormal reaction to such simple kind of tasks, we found out pretty quickly that I had this unfortunately incurable lung condition.

It was a huge shock. I don't really think I understood the magnitude of the disease that I had just been diagnosed with right off the bat. I was fortunate to be pretty stable in my lung condition from 2016, right up to about 2022 of this past fall, where I noticed a deterioration. I was on three oral therapies that were keeping me stable. However, in the fall of 2020, we were noticing a decline, and that's when we had to look into the options of things like IV, which are a whole other ballgame. But it's keeping me healthy-ish. It's slowing down the progression of the pulmonary hypertension.

It was a shock to receive that diagnosis, because I had plans to be a teacher, I had plans to have my own family. All of a sudden all those plans and dreams I felt like came to a crashing halt. Now, it took me just a little while to get back on my feet. I still wanted to be a teacher and I have continued to be a teacher. I also still wanted to have a family just in a different way. We were very blessed to welcomed our son Luke about a year ago via surrogacy. We still have every intention of living life to its fullest just in a different way.

Originally, we're looking into adoption through the CAS program here in Ottawa. We put our names in and there's a huge wait list for what we were looking for. In the meantime, we thought we'll cast out another net into the surrogacy world. It was just a Facebook post that friends shared, and quite quickly we were fortunate that someone approached us and wanted to meet up in a Tim Hortons and kind of hash things out. Very quickly we found that she was our little angel on earth here and she was going to help us. She was a complete stranger at first, but through time, she's now a family member and a godmother to our son.

Motherhood has been a blessing and it's been a huge challenge as well. Unfortunately, maybe a month after the installation of the IV line into my chest, I suffered two strokes, so it's been a whirlwind of emotions and feelings this past year of the first year of my son's life. He has been a blessing because his spirit, his joy, his love, his innocence just pulls me out of some of the darker moments.

My support system made up of parents, grandparents, family, friends have been crucial. We couldn't have done all this without them, especially during these past crazy months of health decline and the stroke scenarios that we've faced. My mom has been living with us for the past couple of months, and now we're on project independence where we're trying to build our ability to not have one-on-one with me, but one-on-one, of course, with our son, Luke. We're gaining confidence. We're gaining independence. We always know that we're well-supported by family, friends, and by neighbors as well.

I think it's important to have a community around you that understands the struggles you're going through, and I think this pulmonary hypertension community here in Canada is such a family. I've met several people over the course of the conference and I felt like I've already known them, but we've never met in person. I's been a real blessing to actually see them in person and get a chance to connect and to just hug it out and share the love. Because as a community, we are very open and honest with each other, and we know we can support each other in the highs and the lows. While we were in lockdown, the opportunity to be online and meeting together allowed us to be more of a family, more fabulous together, if you will. It gave us a chance to share and to learn from each other and our journeys.

I think I would've told myself in 2016, that self that was just being diagnosed, reach out to others, ask for help. You're not alone. There's a whole community behind you, and know that it's okay to not be okay in that moment. Let the emotions come. Let the emotions go. Don't feel like you have to be this strong person without any tears. It's natural to grieve, especially your old life, and start to welcome a new person that you will become. It's going to be filled with some blessings, and there'll be some curses or some curve balls, if you will, but you're not going to be alone.

I'm really hopeful for this new medication that's coming out, sotatercept. It's on the horizon. I've heard some great things about it. I know clinical trials are going on and they're closed here in Canada. I'm holding out hope for more treatments, and one day a cure, that this will all be in the rear-view mirror and will not have to ever talk about pulmonary arterial hypertension again.

My name is Jane Sernoskie, and I'm aware that I am rare.

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