Anne-Marie’s Story: You Only Live Once

by Anne-Marie

Bonjour! My name is Anne-Marie and I was born with Tricuspid Atresia. I spent a lot of time in the hospital and I had a couple of surgeries as a baby and a few more in the following
years.

My major surgeries were done at Sick Kids in Toronto (where I first learned to speak English since I am French-Canadian). When I turned 4, the doctors told my parents that I could have a Fontan procedure and there was a small chance that it would be successful since they hadn’t performed this surgery on anyone else this young at that time. My mom knew I was stubborn and wanted to live longer so she went with her instinct and said yes to the surgery.

The cardiologists said the surgery would give me a longer life but I would not live past 11 years old. Before heading to the operating room, the doctor asked me if there was anything I wanted after my surgery. I told him that I desperately wanted a bag of chips and a puppy! He was about to give me an answer when he saw my mom’s face: She was absolutely terrified of dogs. He turned to me and said: “You can have chips when you wake up but you will have to wait until your 11th birthday for the dog.” Tricky, tricky doctor!

I soon surpassed the age of 11 and the doctors told me that I was doing so well that they would wean me off my medication and I would be allowed to add more sodium into my diet. While that was nice, someone owed me a dog. I got my first puppy (Dési). My mother faced her fears and made a new best friend, and I got to eat chips. I was feeling great!

I had a normal and fun childhood. The only difference was, I couldn’t participate in gym class (which was horrible, because I had to go to typing class instead) and I was on a very strict low-sodium diet. Although I’m a sucker for salt, I still stay away from it to this day.

My teenage years were just like everybody else’s: I was reckless at times and I wasn’t always smart about my choices, but I survived it all and I had good friends looking after me.

When I was 16, I was on my first travelling experience alone. I went to the south of Spain for the summer to take Spanish classes. It was an amazing experience, but I had a mini-stroke while I was there and it was scary. When I returned, an MRI confirmed that I had had a huge blood clot on the right side of my brain. I felt so lucky that none of the symptoms were permanent. Since then, I have been taking anticoagulants.

It was also in my adolescence that the doctors told me that I could never have a child: it could kill me and the baby. At that age, I moved on to adult care at the Ottawa Heart Institute. The wonderful people there have been taking care of me ever since.

In my 20s, I started to develop pretty bad arrhythmias and my heart symptoms started to affect me emotionally. Before, I never felt different than anyone else or at least I didn’t take the time to think of it much. By the time I was 25 years old however, I realized that I had limitations and side effects of this heart malformation. It’s as if I woke up one morning as an adult and realized that my health wasn’t perfect and that I would have obstacles throughout my life because of it. They tried different drugs to manage my symptoms, but they were always there.

Before I turned 30, I married my amazing husband Matt. Our wedding was awesome, barefoot on the beach down South, with 60 close friends and family. We were so happy together. It is a bit difficult to see all my friends and siblings have children. We are, however, on a waiting list for adoption and my husband and I are lucky to be Godparents to five amazing kids!

Anne-Marie at Geiranger

Anne-Marie at Geiranger

Due to my symptoms and some complications that were arising, the cardiologists decided it was a good idea for me to undergo a revision to my original Fontan surgery. So, at the age of 33, I had an extracardiac Fontan at the Toronto General Hospital to try to fix some of the problems I had. During this surgery, they also did a maze procedure, they removed an aneurism in my heart and they placed a pacemaker in my chest (the pacemaker was a surprise when I woke up!). The recovery was very slow but I am feeling much better now.

I have days where I’m ready to do anything and other days where all I can really do is watch some Netflix and rest on the couch. Since this surgery, I have been taking more medication (anti-arrhythmia meds, anticoagulants and lasix). I’m hoping this recent surgery gives my heart a strong boost to keep on because I plan to live past 100.

I’m still at the Heart Institute. My doctor is Dr. Luc Beauchesne. He is great and so is Joanne Morin. She is always good at patiently answering any questions I have no matter how stupid they may be. I have appointments once a year although after my Fontan revision, I was visiting more often. Everyone is always so attentive and kind. I’m lucky to have the Ottawa Heart Institute close by.

When I think of my quality of life as an adult CHD survivor, I realize I have some obstacles. Yes, I have regular medical visits, surgeries, various daily pills, a pacemaker, limitations when it comes to family planning, my diet and exercise, BUT I feel so happy and blessed for everything I DO have. I don’t feel that my heart defect stops me from living a happy, healthy life. I go to the gym, I snowboard, I love trying any new activities and I travel A LOT.

My travels have led me to work at Disney Land Paris for a few months, swim with sharks, hike down inside a volcano, sleep in airports, and trek through so many different cities and National parks. My heart defect and health problems have not affected my career either. I completed an undergrad in psychology, a Master’s in counseling and a degree in teaching. Currently, I am a teacher at a high school near my house.

I know what keeps me happy and healthy: a positive attitude and the amazing people that surround me and constantly support me. I try to remember these following rules:

You Only Live Once, so live it up as much as you can!
You Only Have One Heart, so nurture it and
appreciate it as much as you can!

 The story was also featured in www.cchaforlife.org/

Learn more about congenital heart defects.

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