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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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Carys and Paisley Dempsey - phaware® interview 309

Feb 21, 2020

Sisters Paisley Dempsey (10) and Carys Dempsey (11) discuss their mother Nicole’s PH diagnosis and their roles as caregivers. Nicole served as a PHA Canada Ambassador from 2014-16, before being elected to the Board of Directors in 2017. She was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in 2013. Prior to her diagnosis, Nicole worked as an elementary school teacher for 12 years. The Dempsey family resides in Cambridge, Ontario.

Paisley:
My name is Paisley, I'm 10 years old.

Carys:
My name is Carys, I'm 11 years old. Our mom has pulmonary hypertension and we're from Ontario, Canada. Our mom [Nicole Dempsey], she started to feel really sick. She was starting to become unable to do things. One time, it got really bad and [our parents] had to go to the doctor and she got diagnosed with PH. We didn't really know what was going on, because we were really young and they explained it to us. We still didn't really understand, but knew something was wrong.

Paisley:
Mom had oxygen, so it was kind of hard for her to do things so dad had to help her. It was kind of scary, because it was really hard.

Carys:
At first, it was very different and it was just becoming a bit more like our life. Now, it's just a normal thing. It's normal now...

Paisley:
We know that we're going to live like this.

Carys:
We tell our friends, but...

Paisley:
They don't quite understand.

Carys:
I think they don't understand as much as we do, because it's not part of their life. When we go out, sometimes people give us looks but it doesn't really bother us. It's like we don't care.

Paisley:
We see it a lot.

Carys:
Well, we don't see it a lot, [but like] with mom's parking pass... the disability pass, sometimes we'll park in the front and sometimes people would be like, "Well you don't need that." It's rare, but it happens here and there. It gets us upset sometimes when she's not feeling extremely well and it can get upsetting for us, because you know, we want her to be healthy and be okay. So, it can be upsetting and get us angry sometimes, because we don't like it.

Paisley:
Not angry at her.

Carys:
Angry at the illness.

Paisley:
We help bring groceries in and heavy stuff...

Carys:
Heavier things that she may not be able to carry, because it maybe gets her out of breath.

Paisley:
We help do the dishes...

Carys:
Because bending can be hard. So, we do the lower rack of the dishes and the top. We feed the dogs and help with the dogs when they're getting too crazy or anything that's hard for her. Advice that I would have for someone who just walked out of a clinic with PH or [to] a caregiver, I'd probably say that, you know, it's going to be okay.

Paisley:
You're going to have to help though a little more than you usually do.

Carys:
It'll just kind of adjust to your lifestyle and it'll just become more of a normal thing in your life and it won't become one of those sore thumbs. It's a pain but, you know, it won't be as difficult. PHA Canada wanted me to draw a shirt for PH [awareness] with lungs. So, I decided to do it and I drew lungs. On one side, there were flowers and then on the other there were a little hearts with blood vessels and positive words. I did that so that other people could wear it and feel happy that other people know about it. The shirt was made and now a lot of people wear it on PH [Awareness] days. We feel it's important for our family to be involved, because it can help other PH patients feel that they're not alone. Other people are struggling with it, because you know, some people feel really sad about it. [Also] it helps PH patients maybe feel better about themselves so that they don't just think that it's something that they're just living with. We just live like it's a normal life, you know, not like anything happened. [We] just try to...

Paisley:
Try to avoid it.

Carys:
We don't let it control us. We don't let it get to us all the time.

Paisley:
We try not to think about it a lot.

Carys:
It's not really acting. It's because it's just becoming a normal thing. Our mom was a teacher, but because she got sick, she can no longer teach anymore.

Paisley:
Because she got a little too sick.

Carys:
What's a good part is she has lots more time for us. She can pick us up from school and drop us off and you know, lots more time to do things on the weekends and weekdays and spend time together. So, that's the silver lining of her being like sick.

Paisley:
My name is Paisley.

Carys:
And my name is Carys.

Both:
And we're aware that our mom is rare.

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