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Canadian Congenital Heart Alliance

Faces of CHD

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During 2019 Heart Awareness Month, we will be highlighting CHD stories of our members.

Our next Faces of CHD story is about Matt. You can read Matt's story below. For previous stories, see bottom of page.

 CCHA Faces of CHD in Canada - Matt     CCHA Faces of CHD in Canada - Matt

Matt from Clark's Harbour, NS

Age: 46

CHD diagnosis:  Levocardia, sinus inversus or aorta, AV discordance, pulmonary atresia, VSD, Rastelli, Fontan

I’ve had about 9 or 10 surgeries since I was born. I had my first surgery at 6 months when they put in a shunt. I had the big surgery when I was about 13 years old, when they did ASD and VSD repair, and Rastelli, I was in the hospital for 2 months and another surgery at 15. Then when I was 18 I was sent to Boston to have a Clamshell device put in as it hadn’t been approved in Canada yet, Nova Scotia healthcare paid for that surgery. My last surgery was 3 years ago, after I had been ill for some time and my liver started to become affected. They replaced the Rastelli with a human aorta. I have felt great ever since, like I was 16 again and better than ever felt in my whole life!

 

The hardest part for me is that when you are sick, everything is affected. Your ability to do things on your own, sometimes you have to ask for help and that can be hard or embarrassing. Also, you mental health starts to suffer, you worry, get depressed, start to think about how long you’re going to live and if you will survive the surgery. Then after you recover from the surgery, you feel great, like you can take on the world.

 

The best advice I have I ever got was one time I was in the hospital with an older gentleman and he told me to do whatever I want, find a way to to achieve it and not to stress over the details. That’s how I’ve tried to live my life, do what I can and if I fail that’s ok, but keep moving forward.  I’ve always tried to be grateful and remember that someone can always have it worse.

Also be compliant with your treatment and follow up, always go to your appointments and ask questions. 

 

The best source of medical information has always been my cardiologists.  The web has too much information, can be overwhelming and not always trustworthy. 

 

I am grateful for the time I’ve had to spend with family. I have a great family and had a great childhood.  I’ve enjoyed life and am thankful and happy to be alive.

 

 

See below for previous Faces of CHD stories

Caleb and Kerri's story  CCHA Faces of CHD in Canada - Caleb and Kerri  PDF icon Download Kaleb and Kerri's_Faces of CHD story.pdf (216.68 KB)

 

Lisa D's story  CCHA Faces of CHD in Canada - Lisa   PDF icon Download Lisa D_ Faces of CHD story.pdf (116.61 KB)

Adam Z's CCHA Faces of CHD in Canada - Adam story https://www.cbc.ca/news/canada/calgary/adam-zinatelli-trumpet-surgery-heart-cpo-1.4963854?fbclid=IwAR1lrDvi0zeUa_dEUXo0epI7oGyMVMS28AcQBT0ByJFESdpMuZDi95lBoyU  photo credit: (Masa Higuchi)

Sylvia G's story  CCHA Faces of CHD in Canada  PDF icon Download Sylvia G_Faces of CHD story.pdf (111.09 KB)

Karl S's story  CCHA Faces of CHD in Canada - Karl    PDF icon Download Karl S_Faces of CHD story.pdf (91.35 KB)

Jacey H's story  CCHA Faces of CHD in Canada - Jacey  PDF icon Download Jacey H_Faces of CHD story.pdf (206.75 KB)

John G's story  CCHA Faces of CHD in Canada - John  PDF icon Download John G_Faces of CHD story.pdf (171.83 KB)

 

To read previous CHD stories, visit our Patient Stories page

About the Author

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Check out how congenital heart disease stacks up against better recognized diseases in Canada! So many affected and so little awareness and funding! Get involved with CCHA, donate, and spread the word about the growing population of of "survivors" so that we can get the care and support we need to live long, healthy lives!

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