Ahh, Tony Bennett. In 1962, he recorded the now well-known and well-loved song: “I Left My Heart in San Francisco”. The lyrics reminisce about the simple pleasures of San Francisco compared to the majestic cities of world and explore the metaphor about feeling like you’ve left your heart in another place because the person you love is there and you are not.
I left my heart in North Carolina, and I’m not speaking metaphorically. When I heard I was going on the transplant list and would be getting a new heart, I immediately began to consider how to make the best use of my old heart. I’d heard that after my liver transplant my old liver went into a freezer at the Hospital for Sick Children in Toronto, but I didn’t want that to happen to my old heart. I knew it could be of more use.
So I consulted with my genetic metabolic doctor about the possibility of offering my heart post-transplant to a centre or hospital doing Glycogen Storage Disease research. She made use of her extensive connections, but couldn’t find anyone who was interested.
At that point, I was angry. Glycogen Storage Disease, Type 3A is referred to an orphan disease, meaning that it doesn’t occur often enough in the general population to inspire funding and massive study. In the United States, there are two universities I know of that specialize in GSD: one in Florida and the other in North Carolina.
I’ve said before that my personal experience with GSD, type 3A has been severe. Usually transplants are not required and puberty eases the symptoms of the disease. Life span is not supposed to be affected.
At times when I think about my ‘luck’ concerning my severity, I am bitter. But knowing my case is severe and I am still alive gives me hope, and spurs me on to use my body for research to help not only others who are severely affected, but possibly slow the progression in the regular cases. When it looked like my heart was going to end up in the freezer of Toronto General Hospital and not in the hands of a GSD specialist, I despaired. What was the point of going through all of this if valuable research information was going to be wasted?
It was then that I took matters into my own hands. Duke University in North Carolina wanted me to come visit to be a part of their GSD research program, but I had to pay my own way which I was unable to do. I’d been in contact with their genetic counsellor, Stephanie Austin, to participate in the studies that didn’t require travel, so I emailed her directly to inform her of my situation. She consulted with Dr. Priya Kishnani who is in charge of the GSD research program and agreed that Duke would take my old heart for study after transplant.
I find great meaning in my life from being able to help others. Whether it’s through my work at Hope for Families Counselling Centre, The Phoenix Zine or offering my participation in research studies, being able to be of use and contribute to the world helps me deal with my life and illness.
What I didn’t expect was the way I felt pre-transplant about sending my old heart off to North Carolina without me. Talk about separation anxiety! It was difficult for me to imagine living without something I’d had my whole life. I was used to my old heart. Yes, it had its flaws, but we were partners. We knew each other’s rhythms and likes and dislikes. And it may sound funny, but I actually felt guilty about sending my old heart to another country to be a lab rat. My old heart lasted 27 years, a full 23 years after it was suggested I should have a heart transplant at the same time as my liver transplant. While it wasn’t perfect, it did good.
But all the anxiety I felt pre-transplant disappeared after it was over. My new heart and I are still getting used to each other, and our rhythms aren’t always in sync yet, but we’re learning and adjusting together. And by the time 2010 arrived, my old heart was in North Carolina, its final resting place.
I received word the other day that the information gathered from my heart will hopefully be presented at a conference in November. I don’t get to be there, but it feels like a fitting birthday and first aniversary of my heart transplant present.