Journey to a Heart Transplant

I was born in Ottawa, Canada with a congenital heart defect. I had 3 heart surgeries as a child, the first one being the day after I was born. Doctors had warned my parents that these surgeries were palliative: problems would eventually start to arise because my heart would start to fail. Although I couldn’t participate in gym class or sports and I had regular cardiac appointments, I was a happy and energetic kid.

In my 20s, the expected cardiac symptoms slowly started: I had a mini-stroke and heart arrhythmias. I started taking more and more medications and with time they were less and less effective. At the age of 32, the cardiologists decided it was time to revise the surgery I had as a child. This was a massive surgery that included many procedures to fix my complicated heart. I was so hopeful, thinking that I would feel like superwoman afterward…but things didn’t turn out that way.

Although I felt better for a bit, my heart failure did eventually continue to progress to an advanced stage. I had really bad ascites (fluid retention in my abdomen – everyone thought I was pregnant), I had bad arrhythmia that wasn’t even controlled by my pacemaker, and worst of all, I was so fatigued that it had become difficult to walk for longer than 10 meters. My husband and I travel A LOT and the last couple of trips before my transplant consisted of Matt carrying me everywhere because I just couldn’t walk.

In early 2015, my cardiologist told me that my heart was in such bad shape that I didn’t have many years left. My only option was to be evaluated for a heart transplant. Because I was so sick and needed to be on IV to help my heart pump, I had to be hospitalized during the wait. After months of hospitalization, the wait was over and I had my heart transplant on September 17, 2015. I remember feeling such a strong mix of emotions that night: a feeling of hope and excitement for the future and a feeling of sadness and guilt because there was a family somewhere who had lost someone and it was this loss that gave me a second chance. I think about my donor every day.

There were some complications after my heart transplant. I had to stay on an ECMO machine for 4 days after the surgery. Once the surgeons removed me from the machine and closed me back up, I suffered a subdural hematoma (hemorrhaging in my head). Because the blood was pushing against my brain, I had no more than 24 hours to live. The surgeons quickly performed a craniectomy (removing the right half of my cranium to remove the blood and release the pressure against my brain). That half of my cranium was placed back on my head 4 months later.

Needless to say, my real recovery only started once my head was put back together. Completing the cardiac rehabilitation program and going to the gym was so freeing. It’s so crazy to be able to run (even if it’s only a very short distance), sprint up the stairs, or travel with my husband and not need him to carry me. I have energy and I feel like myself again. When you are sick for so long, it’s difficult to be yourself. You don’t have the energy to express your real personality.

Since my transplant, I can spend time with the people I love without secretly wishing I was lying in my bed; I am back at work, as a teacher; my husband and I have been travelling; I’ve been talking about the importance of transplant and how it has saved me (physically and mentally); and I’ve had the opportunity to participate in the World Transplant Games in the South of Spain. It was the first time I ever competed in an athletic event. I didn’t bring back any medals, far from it, but it was amazing!

It has been over 2 years since my transplant and I am forever grateful to my organ donor for giving me more time with the people I love, my medical care team, for saving my life time and time again, and my family and friends for always making me feel like I don’t need to worry about a thing because they are there and they got this with me.

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Power Player – Anne Marie

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