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Kelowna woman with heart disease notices lack of support in community, starts support group

Heroes for heart disease

A Kelowna woman living with congenital heart disease (CHD) is taking it upon herself to provide more support to the community for people living with cardiovascular diseases, through an online support group.

“Even though my heart’s a little broken and not fully working like it should, I feel like I have the biggest heart out there and I just want to help people,” says Ashley Mckillop.

Mckillop was born with two holes in her mitral valve. This valve is responsible for blood flow from one chamber of the heart, to another. At only six months old, she was rushed to the hospital because she was sick and wasn’t eating - this is when doctors discovered she had CHD.

“When I was a year old, they decided to do the patch and by the time I was seven, the patch wasn’t working anymore so they did a full on mechanical mitral valve replacement,” she says.

Mckillop came out of surgery with an external pacemaker which she is fully reliant on.

“My heart went into full heart block (rhythm disorder called arrhythmia)… Coming home I was a nervous kid, I just remember being super anxious.”

Mckillop is now on her third pacemaker and has had two open heart surgeries.

“Its this tiny device run by a battery hooked to your heart and you just have to trust that it’s going to keep you going everyday. I definitely had some anxiety issues with that cause I did have some stuff happen here and there, but its never fully failed on me,” she explains.

“As a kid it's hard because you feel different and then you got all the scars to go with it. Everyone questions you. I covered it up for a really long time so I didn’t have to talk about it.”

As Mckillop was growing up, she noticed a lack of support for people with cardiovascular diseases and as a teenager, the anxiety associated with her CHD grew.

“Say you’ve been rushed to the hospital, they don’t know what’s going on, but you know there’s something wrong - that will never leave your mind,” she says. “For example, when I came out of surgery, I had the external pacemaker and the doctor was in training so he came in and he played with the dials. Well, he accidentally turned the dial down a little too far and actually shut it off, so then I passed out and then I came back once he turned it back on. I remember that whole morning, exactly what happened and that’s never left. It’s stuff like that, that sticks in your mind.”

For Mckillop, the anxiety she experienced everyday turned to depression.

“There wasn’t much support, like there was support groups for the parents but as a kid you don’t really understand what’s going on either… I honestly don’t know why it's lacking, cause it's definitely a number one disease out there. One-in-100 babies are born with it. Some could be mild, moderate — some could be more complex and I feel like its not really talked about.”

Now, as an adult, she advocates for people with CHD and she is determined to spread awareness on cardiovascular diseases while supporting those who live with them.

The goal of the group is to have people from any age meet online, share their stories, give feedback, provide information and ask questions related to cardiovascular diseases. Once the COVID-19 pandemic is over, Mckillop hopes to do in-person meetings with people from the group with special speakers.

“People are like ‘oh I would never know that you have that. You look so healthy, you’re young, you’re active,’ but they don’t know that a lot of days I don’t feel that great. I’ll have rapid heart rate, other stuff going on, or I just feel super tired…Looking at somebody, you’re not going to know that they have heart disease.”

Despite the disease she lives with everyday, Mckillop enjoys being outdoors, snowmobiling, fishing, hiking and working with her husband at their company Dancing Monkey Maintenance.

"My husband has been a huge part in my healing journey and always pushes me to just go for it, even if it scares me," she says.

Mckillop says starting the support group is especially important right now amid the COVID-19 pandemic.

The support group "Heart Hero's" is accessible through Facebook here.



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