Valérie Hay’s Portrait

I have the chance to be an Accompanying Patient (AP) in cardiology, more specifically in the context of the transition from the pediatric health services provided by Ste-Justine to the ones given by the Montreal Heart Institute.

Cardiology is my predilection because I was born with a tricuspid atresia, a congenital heart defect that is pretty rare (5 in every 100,000 living births). This specific defect is described by an under developed right ventricle, resulting in poor blood flow to the lungs and low oxygen levels. It was at 2 months of age that the first surgery was successfully done, than a second one at 2 years, and finally at 11 years old, the Fontan procedure was done. The Fontan procedure involves the redirection of blood returning from the entire circulation system straight to the lungs, thus bypassing the underdeveloped ventricle to get the improved oxygenation. Effectively, the left part of my heart pumps all the blood from the body to get oxygenated; I have a single pump instead of a double pump. Finally, a pacemakerwas implanted to make sure there were enough heart beats for the active 17-year-old Cégep student I was.

Even with a precarious health, I live an active life with walking, working, cleaning and getting the groceries, but I definitely have less endurance than my friends. Despite my limits, I always have a new project! I simply build a life that I like, in spite of having to overcome obstacles like the negative judgements of others and not being able to have children. When I was younger, I felt excluded by the gaze of others and their negative comments. Over the years, I learned to accept my limits and understand that everyone has some. I am proud to say that I have managed to beat the typical prognosis for this defect because I was able to complete higher education, I live by myself, I am able to travel and I have a full-time job.

My congenital heart defect is not as well known or understood in adults. I am one of the oldest people in Quebec with this condition; previously, kids with this kind of malformation did not survive. My cardiologist at Ste-Justine was pretty authoritarian, and I was a pretty mature kid. These things pushed me to be autonomous and take charge of my health at a young age. Consequently, the dependent kid-parent relationship was transformed into a partnership really early. The transition to treatment at the Montreal Heart Institute was done out of necessity and totally naturally: mypacemakerbattery needed to be changed and I was too adult for Ste-Justine so the surgery was done by the Montreal Heart Institute team! Even with my independent nature, I wished for someone to be present and helping me understand and navigate the hardships. I was nervous because I felt overwhelmed by the situation and the obligation I felt to make the links between the different health services in order to get the same level of care I had on the pediatric side. But with time I learned that the different specialists do communicate. If I would have had someone guiding me during that period, it would have probably alleviated a lot of stress.

The differences in procedures and operating mode creates a certain stress and discomfort that I have learned to manage and that pushed me to get involved as an Accompanying Patient. I was searching for a support group for adults with congenital heart disease, to meet people with similar experiences as me, but I found some only in the United States. In Quebec, the only support group is EnCoeur, who are dedicated to parents of children with heart disease, but I could find no Canadian group dedicated to patients with congenital heart disease. This is why I am really pleased to bring my contribution, my real-life experience and my knowledge to this transition project for young patients with heart disease.

I was lucky to meet with a patient and her mother. The young patient will be transferred to the Montreal Heart Institute, and I was glad to be able to show them the different services that I know and use there. I could feel that the parent and the patient do not live the transition the same way. I could feel the parent’s worries, and I hope that I can help the parents by being present for their young adult and explaining how to navigate within the different adult services. For the patients, I believe that the Accompanying Patient is an excellent resources because understand what the patient experiences and the different situations they may face. A trusting relationship between two patients is probably easier to establish because of the shared heart disease.

Finally, I consider myself extremely lucky to have the health, the strength and the opportunity to be involved in this beautiful project, and fortunate to be able to fill such a need by this new role of Accompanying Patient!

 

Translation : Ginny Jones

This content has been updated on 10 April 2019 at 10 h 05 min.

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