Have a heart? You should think and talk about giving it away

Do you read obituaries in the newspaper? I don't very often, but my colleague here at CBC, Gerry Amey, does. This week there was one in particular that caught his attention and I'm thankful that he brought it to mine. 

James Boone passed away from an aggressive skin cancer. He was 67. Mr. Boone's obituary might have appeared in the paper many years earlier had it not been for a life saving double-lung transplant a decade ago. 

I went to see Mr. Boone's daughter, Sharon Thompson, the day after she buried her dad. One of Jim Boone's final wishes was that all his family and friends sign their organ donor cards. Sharon agreed to do a radio interview with me for CBC Radio's On The Go. 

A chance, she felt, to spread her dad's wish across the whole province. 

Doctors always believed Jim Boone had asthma. Turns out, it was something much more serious.

"In 2004, my dad was diagnosed with primary pulmonary hypertension with chronic bronchiolitis. There was no cure, the only cure was to have a transplant," said Thompson.

Boone and his wife moved to Ontario. Donor recipients have to be at Toronto General Hospital within a moment's notice should an organ become available. After an agonizing year-long wait, Boone was notified in 2005 he'd been matched with a donor. 

The Boone family wasn't given any information about who the person was or where s/he was from. The family wanted privacy. But the Boones were told a few details about the donor's decision to give this gift of life. Jim Boone's new lungs came from a 15-year-old boy. 

"He was killed in a motorcycle accident. It's quite an amazing story that a 15-year-old boy had actually taken the time to approach his family and he had expressed his wishes that should something ever happen to him he wanted to be an organ donor," said Thompson. 

"I can honestly say there was not one occasion that went by that I did not think about that family. Every Mother's Day, every Father's Day, every Christmas. I always wondered about how that family was doing," Thompson explained through tears.

"I cannot imagine what they went through, but they made such a sacrifice and such a difficult decision knowing their loved one's wish. There's not enough words that could express how grateful that we were to that family who donated. They gave him 10 years and he truly, truly enjoyed it."

Thompson says her father spent every moment he could with his family. 

"Anything that my children were involved in, he was there front and centre ... he didn't miss it."

One of Jim Boone's other wishes was to see his both his granddaughters graduate from high school. Thompson said just before he died, that wish came true. 

"It was my daughter's graduation and she had gone and gotten all dressed in her grad dress and went to palliative care and he got to see her that day. He passed away that night at 1:05 in the morning when she was at safe grad."

Now, Thompson is hoping her father's other great wish for more organ donors will be realized.

"I know in NL, organ donation is not a huge topic of discussion and a lot of people don't even think about it until something happens to their loved one," said Thompson.
 
In Newfoundland and Labrador you can indicate your willingness to become an organ donor when you apply for your driver's license or a renewal. A person can also make their wishes known through an Eastern Health program called OPEN — Organ Procurement Exchange for Newfoundland and Labrador. 

Thompson says what is also vital is that people make their position known to their family. 

"If a family member doesn't know that they want to donate their organs then it might not happen and in our situation Dad might not have been blessed with those lungs had that child not expressed his wishes," said Thompson.

But there are discussions happening in this province about approaching organ donation in a totally different way. 

"Right now you have to choose to be an organ donor, what we're saying is that we think it should be a case of, you have to choose not to be an organ donor. It should be a presumed consent," said Parsons, Liberal Opposition critic for Health and Community Services. 

Parsons says he understands there may be opposition to the idea but with an opt-out rather than an opt-in system, people still have choice. 

"There was one report back in 2009 that showed in the UK that when they brought in presumed consent there was a 25-per cent increase in organ donation," said Parsons.

"If we can do anything to save people's lives, we're giving people a second chance here, and I think that's worth exploring." 

Thompson says the 15 year old, whose lungs were donated to her father, also saved seven other lives. After the successful surgery, the Boones wrote a letter to the donor family. The hospital made the delivery. 

Now that her father is gone, Thompson is thinking of making contact again.  

"I'd actually like to do up one now just to let them know what the last 10 years have brought to us. He was truly appreciative."

Thompson reminded me of how to know if you've agreed to be an organ donor. You should see a little red heart on the right hand corner of your licence. I had to check, it was so long ago. Good, it's there. How about you? Do you have a heart?