TANYA SUMKA A heart transplant is more complex than waiting on a list
Since Tanya Sumka’s children were young, she has reminded them — whether they’re making homemade perogies or doing laundry — “you need to know how to do this, in case I’m not here.”
In earlier years, they assumed it was because she might be in the hospital. When her daughter was an infant 12 years ago, Sumka was diagnosed with viral cardiomyopathy — an infection that causes acute inflammation and weakness of the heart muscle.
Over the years, Sumka’s condition worsened, but she continued to try to live as normal a life as possible. She took her two children to Ukrainian dance lessons and enjoyed spending time with her husband on their acreage.
However, three years ago — around the time she had a left-ventricular assist device (LVAD) inserted — Sumka was shocked to learn from doctors that she would need a heart transplant in the long term.
“It was like a punch in the gut,” Sumka said of the moment she received the news. “What’s life like after a transplant? It’s a world of the unknown.”
Since August 2018, Sumka has been awaiting a heart transplant in the hope she can be there for her children as long as possible. For now, she is connected to the LVAD 24 hours a day, limiting her mobility.
Her story highlights the challenges faced each year by about 500 Albertans on a transplant list who are waiting for a call that could change their lives.
What does the prospect of a heart transplant mean to Sumka? “To have a second chance at still having the life that I know, that I potentially could have another 20 years to see my children grow up (and) to give meaning to whatever part of life I still have,” she said. “That’s my dream.”
Sumka acknowledges a transplant is no easy fix. For those in need of a heart, it requires months or even years of recovery from a taxing and complex surgery. And it means taking a laundry list of medications for the remainder of one’s life.
Some days, she said, the enormity of the procedure overwhelms her, as does the reality that a donor life will be lost if she receives a heart.
“There’s tragedy that comes with the gift of life,” Sumka said. “And it’s a very hard thing to get around.”
The support of the medical and transplant teams at the University of Alberta Hospital and Mazankowski Heart Institute has been invaluable on those days of doubt and struggle, she said. “They are passionate with all their patience,” Sumka said of her medical team.
She hopes that by sharing her story, she can spread awareness of the challenges of being a transplant patient when “it is so much more complicated than being on a list.”
Most people Sumka talks to don’t understand it’s not as simple as waiting her turn. “It is a miracle. And you have the responsibility to make the most of it, because it’s (the donor’s) legacy.”