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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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Nicole Dempsey Transcript

Jan 2, 2017

Canadian Nicole Dempsey is an awareness ambassador for PHA Canada. Diagnosed with pulmonary hypertension only a few years ago, Nicole describes the road that led to her PH diagnosis and how this rare disease impacts her family life and parenting.

 

My name is Nicole Dempsey and I'm from Cambridge, Ontario, Canada.

I was diagnosed in December 2013 and it was a year of hardships, but not knowing what the problem was. I was 39. I was a mom of two young girls and I was working as a schoolteacher in sixth grade. When I became out of breath, I just chalked it up to being lazy. I chalked it up to maybe ... I don't know. Maybe turning 40, you start getting out of breath. It was a difficult year and I was ... There were all these little indications. Obviously, in hindsight, it was obvious what it was. I went a whole year like that. Just, "Oh, it's okay. I'm just out of breath." I tried working out. I could never build up the endurance.

At the end of that year right before I was diagnosed in December, I got the flu, and that was the wake up call. I couldn't climb the stairs. I couldn't do just little things. I couldn't walk from, basically, my house to the car. My husband said, "This is enough. I'm taking you to the doctors." I was fortunate to have a family doctor who took my symptoms seriously. Didn't tell me, "Oh, it might be asthma. It might be this. It might be something else." Set me for the appropriate tests. It was, "Bam!" Just like that. Called me, said, "We're thinking it might be pulmonary hypertension. We're going to have to do additional testing, and echo and all that." There you have it.

When that first phone call came and he said pulmonary hypertension, all I heard was hypertension. I thought, "No problem. My mom had high blood pressure. She took some meds." Then I Googled it, of course, like we all seem to do these days, and then I freaked out because you see that two year prognosis thing.

When I went for the echocardiogram, the technician left the room and she said, "Is your husband here?" She said, "I have to go get the cardiologist first." My husband came in, cardiologist came in. He says, "Look. I'm just going to cut to the chase here. You have severe pulmonary hypertension. You have right heart failure. That's your story." I just sat there, because when you're given this diagnosis of something that you have no idea what it is, you sit there. You don't know what to do. I supposed maybe something like cancer, you might process it, because you hear about cancer. Pulmonary hypertension, I had no clue. Still, even after Googling it a little bit, you just have no idea what that entailed. It was just a whirlwind. I sat there, we cried, and then we left. Then it's like, "What next?"

From then, I went into the hospital and I was with low oxygen. I'm on oxygen 24/7. Then they shipped me London, Ontario, which is where the PH specialist was and that's where I had the right heart cath, and that's where it was, "Wow! Yup, this is severe."

I was just blessed to have an amazing family doctor, an amazing local respirologist, we call them. I know they're pulmonologist here. An amazing specialist who sat on my bed and went through everything that we wanted to know about the disease.

We have 10 meds that are approved in Canada, not as many in United States. We're working on that. I work with PHA Canada as well as an ambassador just to advocate for the disease and to try to get more meds approved by Health Canada. We're lucky that we have a good health care system as well, so expensive drugs like these are covered. For the most part, you need a med, you get it.

It's not necessarily a hard process. I guess if you'd get yourself a PH specialist and who know ... I'm lucky, my specialist is very involved. Life isn't the same, but you adapt. I'm lucky, my kids are six and eight and it's almost like they don't any different even though it was only two years ago I was diagnosed. They know what my limitations are. They know I can't run. They know I can't pick them up. They know I can't do the rough housing on the floor, because I get out of breath.

We haven't changed. We travel a lot. We go camping. We keep that up. There's some modifications, because I have to bring my meds and all these stuff and just with the cleanliness of everything involved in that. We just try to keep everything as normal as possible. They know I have some bad moments and I have some tired moments, but we just try to keep it as life as normal as possible.

I'm Nicole Dempsey and I'm aware that I'm RARE.

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