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Double-lung transplant recipient ‘one of the lucky ones’

April 30, 2014   ·   0 Comments

By Tabitha Wells – For Mike Johnson, a local member of the Orangeville Community, long-time employee of Ideal Supply and husband, father and grand-father, needing an organ transplant changed his life forever.

After a long fight against what they thought was just an intense version of the flu, he was diagnosed with Idiopathic Pulmonary Fibrosis (IPF), one of more than 200 forms of a disease called Interstitial Lung Disease.

“My life began to change in November of 2009, with what I thought was the flu,” explained Mr. Johnson, “It did not go away and I was seen by my family doctor as well as internists who thought it was pneumonia or the byproduct of HINI. My breathing got increasingly worse and I was referred to more specialists, who thought it could be any one of a number of lung diseases.”

He was eventually diagnosed at the Toronto General Hospital (TGH) Lung Disease Clinic and was told that, without a transplant he would have only about three to five years to live. The quality of life he could expect for that time period was rapidly decreasing, and with his family, he decided to pursue becoming a candidate for a transplant.

The process to get on the list in lengthy. Once you have decided to proceed, first you have to go through meetings with transplant coordinators, anesthetists, social workers and psychologists, as we as receive blood tests, x-rays and scans, and make regular visits to Toronto General Hospital (TGH). And that’s just the first step.

In May of 2013, Mr. Johnson found out that he had been accepted onto the list for a double lung transplant, where, at the time, there were 84 other people on the wait list.

“Once you are listed the waiting truly begins as every time the phone rings long distance you think it is the transplant team calling,” he said. “I was one of the lucky ones as I live less than three hours from TGH, but for those who do not they have to relocate to the Toronto area. There are expenses and life as you knew it is no longer but the outcome is well worth it. No gain is without risk.”

Every three days in Ontario, at least one person dies because of being unable to receive an organ transplant in time. Every three days, another person is added to that list of 1500 people in critical need of an organ transplant in Ontario.

While the numbers may not sound that huge when compared with the overall population of the province, it’s still 100 more deaths that could have potentially been prevented.

April was Donor Awareness month, and in conjunction with the Trillium Gift of Life Network (TGLN), communities across the province worked to address the issue of the large need for tissue and organ donors.

“Trillium Gift of Life Network has been around for about 12 years and is the provincial agency responsible for the entire donation and transplant system in Ontario,” said Ronnie Gavsie, President and CEO of TGLN. “We believe in working towards creating a stronger donation culture in this province, to have the majority of Ontarians as registered organ and tissue donors.”

Anyone 16 and older is able to register to consent as an organ or tissue donor, where the donation takes place after death. Currently, the number of registered donors in Ontario is staggeringly low at only 24 percent.

According to Ms. Gavsie, this number is so low due to both a lack of awareness surrounding the high need for donors and a lack of education surrounding the topic. She added that the decision can be a hard one, especially if continued education surrounding the issue has not been made available.

“We work very hard with many of our volunteer advocates throughout the province to make people aware of the importance of registering consent to be a donor and the importance of letting other’s know,” said Ms. Gavsie. “We diligently work towards spreading the word and addressing any misconceptions or providing information that is necessary to help others understand the value of the gift of life. People have to contemplate this and it’s very personal, and sometimes requires a difficult family discussion.”

One organ donor can save the lives of eight people, and exponentially past that if you include the family and friends of those eight people. One tissue donor can enhance the lives of 75 others through things like providing sight for the blind, skin for burn victims, or bone tissue, or heart valves to a child with congenital heart programs.

“It’s extremely important because it saves lives,” said Ms. Gavsie. “Orangeville’s registration rate is above the provincial average, at 30 percent. It’s been incredible to see people really getting on board because they understand the importance.”

Mr. Johnson’s story is one of the few that have a happy ending. On September 7, 2013, he was given The Gift of Life and received a double lung transplant.

“My quality of life has greatly improved, and I can walk freely with no oxygen,” he said. “I am still getting strength back and have to be careful regarding colds. There have been hiccups along the way, but no pain no gain.”

While he still requires a lot of function tests, monthly clinic appointments at TGH and blood work to be completed every week, he doesn’t complain about it, saying that he is incredibly fortunate to have received the transplant.

“I have been fortunate to have the love and support of family, new and old friends and my family at Ideal Supply Co. Ltd,” he said.

“Every day I count my blessings and think of the donor family who made it possible for my life to continue.”

With such an incredible story to tell, Mr. Johnson is now one of the local advocates for organ donor awareness. He, along with others who help to share the message of the importance of registration, will be at Headwaters Health Care Centre on May 6 from 9:30 to 3. They will be providing important information regarding donors, the process and how to register for consent.

Anyone interested in registering for consent can do so online at beadonor.ca, or through any Service Ontario office.

For more information on becoming a donor or how to do so, visit the Trillium Gift of Life Network’s website at www.giftoflife.on.ca.

 

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