“All of us are forever grateful to the donor family that made the choice to donate the organ so that I could still be here alive today,” said heart transplant recipient Janet Parr.
The 56-year-old Guelph resident was given a donor’s heart four years ago after more than nine years of using preventative measures to combat genetic heart disease.
Parr was diagnosed with heart disease in her early 40s and for about six years she managed with a pacemaker. When her heart began to beat irregularly and also race out of control, her pacemaker was replaced with an implanted cardiac defibrillator.
“It would pace my heart if it was regular but it would also jolt my heart if it needed to,” Parr explained.
“Because what happens is the jolt actually stops your heart and then your brain tells your heart, okay you shouldn’t be stopped and then the message goes and then it starts beating, hopefully regularly, again.”
Yet within a couple of years she was in complete heart failure and her organs were on the verge of shutting down. She wasn’t strong enough for transplant surgery and her medical team at Toronto General Hospital worked with her for 37 days to build her strength.
She was sent home with a left ventricular assist device (LVAD).
“It was a mechanical pump and so it was attached to my left ventricle and it took the work of the ventricle and it pumped my blood through,” she said.
But that was just a bridge to the transplant and she lived at home with the LVAD for two and a half years waiting for a heart.
Eventually Parr’s right ventricle also failed and on a Thursday she was told she would have to be admitted to the hospital the following week until a heart could be found.
“I was back to feeling breathless, feeling weak, having no energy, all of the symptoms I had … before, as well as the threat to my other organs,” Parr said.
However, at 1am on the following Monday she got the call.
“You’re awakened out of a sleep and I think I sort of probably knew as I was answering the phone that it could have been, what it was, but my husband and daughter, neither of them woke up,” she said.
After getting all the necessary information she woke up her family.
“We were all just so matter of fact about it and probably stunned to some degree, but we also know in any transplant situation the surgeon who’s going to do the transplant has the final say so you could be called on your way to say we’ve seen the heart and … it’s not good or it’s not right for you,” Parr said.
She arrived at the hospital at 3am and waited until about 1pm to receive her new heart.
“I was only in hospital 11 days post-transplant before I was told I could go home and I haven’t looked back since. It’s just been absolutely wonderful,” Parr said.
“I say on the worst possible day of somebody I’ll never know … it gave my family the greatest possible gift they could.”
Now Parr takes part in organ and tissue donation awareness.
“You know one person will die every three days because an organ just wasn’t available,” she said. “I could have been … that statistic, I could have been one in three who died if the heart hadn’t come available.
“So that’s why I try to do so much work around awareness just so that if there are people who haven’t registered to donate and are quite comfortable with that decision that they make that extra step and they register so that no one is missed.”
April is Be A Donor month and Parr said the focus this year is to have everyone who thinks they’re a donor check that they’re registered on beadonor.ca.
She said many people who sign their wallet donor card when they got their driver’s license at 16 have not registered on the new beadonor.ca website run by the Trillium Gift of Life Network.
“There’s still 15% of people in Ontario who actually think they’re donors because of that wallet card or for some other reason, but … they’re not,” she said.
For more information about organ and tissue donation, to register or to check the registry visit beadonor.ca.
