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"To start feeling well again so quickly, I had this overwhelming gratitude for everyone involved – the doctors and nurses and my family, but of course much more so or certainly in a different way, a deeper way – for my donor," John Dickhout says.
He knew unequivocally – not long after his heart transplant at UHN in January 2016 – that he wanted to know about the person whose heart now beat inside him.
"I had to thank these people, not knowing how it might be received," John says.
So the 55-year-old married father of two sat down with pen and paper at his home in Welland, Ont. at the time, and tried to put into words the enormity of being granted a second chance at life because of someone else’s loss. It took several iterations, raw reflection, feverish rewriting and editing.
At the end of February 2016, John mailed his letter to the Trillium Gift of Life Network, which as part of its process, sent it to the donor’s family.
Eyes welling and voice cracking, he reads an excerpt from that letter:
"You’ve given me life back, and I am forever grateful. I will devote my life to making my life and the lives of my family even better and stronger.
My solemn promise to you is that the man I am today is but a fraction of the man I will become. Much of my driving force from this day forward will be thinking of you and your lost family member to make you proud of your loved one’s decision to be a donor."
Another wait begins
While he awaited a response from the donor’s family, which was not guaranteed, John’s inner sleuth surfaced. He began to comb online obituaries published the day before he received his new heart.
Then, on April 30, 2016, an unannounced arrival.
"It was in the typical UHN letterhead-envelope that I got all of my clinic updates on so I just assumed it was one of those," John recalls. "But, I wasn’t expecting one, so that was a little curious.
"I’ll never forget it. I was sitting at our kitchen table, opened it up and the first words are, ‘to our son’s heart recipient."
Even now, the words in the donor family’s letter remain fresh and cut deep. Through tears, he continues, reading an excerpt written by his donor’s father:
"Just as nature outside nudges us to believe in spring and new life, your letter arrived. We find ourselves naturally in a place of grief, however, your gratitude, your generosity, your humour and especially your to-the-brim, overflowing yes to life mean the world to us.
"I’ve read your letter more than a dozen times already and I suspect I will be reading it more in the months and years to come. It was generous and so thoughtful that in the early stages of your recovery, you took the time to write to us.
"You speak of your exceptional healthcare team of doctors and nurses waiting for your new heart. We also had a remarkable team of doctors and nurses along the way doing what they could to breathe life into our boy, but also nurturing his life, his organs for whatever lie ahead."
For her part, the donor’s mother wrote in the same letter of the family’s interest in knowing of John’s progress – a sliver of an opening for John to potentially deepen the so far anonymous relationship.
So he went back to his computer, using the donor letter, online death notices and social media to try and put a name to the person whose heart was now his.
Unravelling that puzzle got a big boost because of an anonymous Facebook message John decided to send.
"The Facebook message just said, ‘I’m not sure I’m doing the right thing. I’m pretty sure I’m your donor’s heart recipient. I hope I haven’t brought you any undue pain or further grief by sending this note, and if I have, I apologize sincerely. If you’re interested in reaching out, I’d love to be in contact. If not, I’ll never contact you again,’" he recalls.
The response he received was more than John could have imagined. His donor’s father wrote, "When the time is right, I’m sure we’ll meet."
John first met Adam Prashaw’s father in June 2016; and his mother a few short months later – in August.
Adam was 22, lived in Kanata, Ont., a suburb of Ottawa, with his family. He died on Jan. 24, 2016, following a seizure in a hot tub.
"He had a joy of life and a bit of a character. He was very courageous and supportive and had all the values you’d want in a son,” says John, who has since learned more about his donor.
Timeline: John Dickhout’s Medical Journey
John and Adam’s parents have met seven to 10 times in the past year-and-a-half.
They were among 25 family members to greet John at the finish line of the 5-kilometre race during the Canadian Transplant games in Toronto, August 2016, and Adam’s Mom, Dad, sister and aunt were among the supporters at a 10-kilometre race that he ran last month in Ottawa – just over two years after his transplant.
"For John I think it has put a different perspective on organ donation," says Lynn Dickhout, his wife. "He has been able to put a name to his organ and his hero. And now it’s almost like he’s going to do the best he can for Adam.
"John has a positive attitude, he always has," Lynn adds. "And, if anything that shows more. It’s hard to be miserable around him.
"If anything his attitude just glows, it shines more than it has before. He can take a lot. He is one of a kind."
John also realizes that his story is extraordinary since many transplant patients and donor families often prefer to remain anonymous.
"The thing that has continued to strike me is how much gratitude my donor family has shared for my reaching out to them," John says. "It has been overwhelming to me.
"You’ve given me the greatest gift that anyone could. How could I not say thank you for that."
He recalls a poignant excerpt from one letter, written by Adam’s father:
"The organ transplant network and healthcare teams deemed you the best match for our son. That obviously is a medical decision, and on a completely differently level as you shared your pre-transplant life and post-transplant commitments, I sensed your love, hope and optimism.
"It does seem like a perfect match. And I also suspect that my son is grinning in agreement."
As part of this year’s National Organ and Tissue Donation Awareness Week, April 22 to 29, UHN joins Trillium Gift of Life Network in celebrating and continuing to build a culture of donation in Ontario: