Posted by Ellen on July 06, 2003 at 09:06:46:
Dr. Shapiro saving Tim
Edmonton Protocol a godsend for city man suffering from Type 1 diabetes
By SCOTT HASKINS, EDMONTON SUN
Tim James was a normal seven-year-old boy - bad. Which is good. Sarnia, Ont., was his home, but the world was his oyster. It was all fun and games.
Then he turned eight.
"I woke up one Sunday morning and I just felt awful," he says. But that still couldn't get him out of going to church. "Walking down the aisle after the service, I just passed out."
James had Type 1 diabetes. His pancreas just stopped making the insulin that is necessary to turn food into energy.
It marked the start of a life-long battle he is on the verge of winning, thanks to renowned Dr. James Shapiro and what's known worldwide as the Edmonton Protocol.
"This man gave me my life back," says the 38-year-old business development manager for Clark Builders.
"And he gave me my husband back," says his wife Angie. "The Tim today is the man I married. I just might keep him."
Where would he be without Dr. Shapiro?
"Probably dead," he says. "I certainly wouldn't be looking ahead to a long, happy life with my wife and children."
Justin is two, Nathan is four and Kaileah is six. And dad is his jovial old self again.
"I have my energy and my self-esteem back. It's a nice feeling to come home and not completely run out of gas," he says. "A year ago, I wasn't sure I was going to wake up in the morning."
His future meant probable kidney failure and eye damage, maybe even lost limbs or death.
Then a University of Alberta Hospital team led by Dr. Shapiro made headlines in the spring of 2000 with the announcement of a treatment alternative for adults with Type 1 diabetes.
The Edmonton Protocol involves transplanting islet cells from a donor pancreas into patients, freeing them of a dependency on daily injections of insulin. So far, there has been an 80% success rate.
The program is funded almost entirely by Capital Health and the provincial government. Edmonton is the only Canadian city where transplants are performed. And Quebec is the only other province providing any kind of assistance for people wanting to come here for treatment.
When the Edmonton Protocol was first announced, then-U.S. president Bill Clinton allocated $30 million for the project. Meanwhile, Ottawa handed over a paltry $3 million.
"The health care here is phenomenal," James says. At least compared to Ontario.
He moved to Edmonton last July for the transplant and to be a part of a three-year, follow-up study. He must check his blood-sugar count seven times a day and go back to Dr. Shapiro every two weeks for bloodwork.
And he's not going anywhere when the study ends. "We love it here."
The surgery is not yet performed on children. That is the goal one day because, says James, "It breaks your heart to see a kid with his retinas shot. That's why I'm so proud to be a part of this."
It was two Canadians, Charles Best and Fred Banting, who first discovered insulin in 1921.
"What Dr. Shapiro is doing is equally important," says James.
"And he's doing it with no help whatsoever from Health Canada."
The first 20 years of life as a diabetic were tolerable. He was constantly checking his blood sugars, but you get used to the needle. "I felt great. I had a pretty good life," he says.
Then they changed the way insulin is made, opting for a synthetic variety.
"It was supposed to work the same, but it didn't. It was a disaster for me," James says.
The next nine years were a nightmare. James started his own contracting business, but had to give it up due to fatigue. It was one finger prick after another, one insulin injection after another, this drug, then that drug.
"Your blood sugars are supposed to be between 4.5 and 7.0 mmol/litre. Before the transplant, his had an incredible range of between 0.6 and 30.8.
"I really should be dead," he says.
Life became constant torture and torment, with so many high-low results he never knew how he felt. It got so bad that his wife had to wake him up twice a night to test his blood sugar.
"I could never be sure I was going to wake up," he says. "I was a healthy-looking young man, but I was totally incapacitated."
James started e-mailing Dr. Shapiro every few months after he heard of the breakthrough. He was shocked to pick up his phone one day and find the doctor on the other line.
"It was a call that changed my life. It may have saved my life," he says.
Two days later, he was on a plane bound for Edmonton. Tests showed him to be a suitable transplant subject.
"I went home, fixed up the house a little bit and sold everything that wouldn't fit in a U-haul," he says. "We were the Beverly Hillbillies."
Edmonton would be a strange new world and, he hoped, a much better world.
"It was tough on all of us, especially Angie," he says. "We didn't know a soul. I'm a positive guy, but it's hard to uproot your family and move across the country."
Best thing he ever did. The transplant took place on Dec. 23. Today, James's blood sugar readings average 6.1, right where they're supposed to be. And he's taking half as much insulin as before. Another transplant is expected to free him from insulin injections completely.
"I can get on with my life knowing that I have one," he says. "I'm very thankful. And I'll do whatever I can to help others. Especially the kids."
Starting by reminding you to fill out your organ donor cards.
"It all starts with that," he says.
In November, he will be walking in the Canadian Diabetes Association's "Great Bermuda Walking Marathon" to raise funds and awareness. His personal goal is $10,000.
If you're interested in helping beat a disease that afflicts more than two million Canadians, you can call Tim at 444-4210, e-mail him at tjjames@shaw.ca or check out Team Diabetes Canada's Web site at: www.diabetes.ca/donations/teamdiabetes/ index.html.
"Amazing," he says. "I couldn't get out of bed. Now, thanks to the Edmonton Protocol, I'm going in a marathon."