“I thought maybe I just needed some antibiotics,” Tom Buttenham recalled from the armchair of his Waterdown living room. “I thought I had blood poisoning.”
So for two hours one day in late June, he sat in the Joseph Brant Hospital emergency room, waiting.
During that time he read a letter from his doctor, who suspected Buttenham had cellulitis.
The truth would be far worse.
“Maybe it will save somebody else’s life. This is a rare disease and it’s deadly.”
After the wait, Buttenham was brought into the next room, where there was a hospital bed waiting and a nurse ready to insert a catheter.
“I said to my wife, ‘This isn’t good,’” said Buttenham.
The next thing Buttenham knew, three surgeons showed up.
“He looks me straight in the eyes and he says to me, ‘I’m not going to beat around the bush,’” Buttenham said of the surgeon.
“I’m like, ‘What?’”
The surgeon explained that Buttenham had necrotizing fasciitis, commonly known as flesh-eating disease or flesh-eating bacteria.
Buttenham recalls the surgeon saying,“‘You’ve got 20 minutes to live. I’ve got to cut your leg off, or you’re going to die.’”
Necrotizing fasciitis is a rare infection that works its way rapidly through the layers of tissue that surround muscles.
According to Health Canada, the disease destroys tissue and can cause death within 12 to 24 hours.
It began the night before, when Buttenham was in the same armchair.
Two days after watching his beloved Chicago Blackhawks win the Stanley Cup, the 59-year-old mechanic manager flicked a small scab on his leg, near the inside of his knee.
“I think it was a black fly bite,” he recalled. “I brushed (the scab) off and it came off so easy.
“It came off and I said, ‘That doesn’t look normal.’ Because it came right off.
“There was no bleeding, but it looked deep.”
About an hour later, Buttenham felt his temperature begin to rise. He put a towel on his head to cool down and went to bed.
When he awoke the next day, there was a big yellow bruise around the bite.
“I said to myself, ‘I didn’t hit myself,’” he recalled. “I’m touching it and it felt raw.”
Then, after going to work, the outside of the bruise started to turn red. His co-workers advised him to go to the hospital.
“I’m thinking, ‘I’ll wait until the end of the day and I’ll go to the hospital – I don’t want to sit there for six hours,’” recalled Buttenham.
But about an hour later, he started to notice a thin red line slowly growing up his leg, at a rate of about an inch per hour.
Like in Buttenham’s case, Health Canada describes the symptoms of flesh-eating disease as including a high fever and a red, severely painful swelling that feels hot and spreads rapidly. The skin may become purplish and then die.
Often, the swelling starts at the site of a minor injury, such as a small cut or bruise, but in other cases there is no obvious source of infection.
Buttenham called his doctor, who advised him to come in immediately. After looking at the leg, his physician provided a note and sent him directly to the emergency room.
Buttenham drove straight to Joseph Brant Hospital, where he met his wife Judy and best friend Yuri. When he arrived at the ER, Buttenham gave a nurse the letter.
“She didn’t look at the letter,” he said, “Didn’t even read it. Handed the letter back to me and said, ‘OK, sit over there.’”
At that point, Buttenham still didn’t know what was wrong.
Because flesh-eating disease progresses so rapidly, Health Canada says treatment usually involves surgery to remove the infected tissue and antibiotics to fight the infection.
Buttenham’s surgeon told him if he amputated his leg, he would have a 50-50 chance of living. If not, his survival rate was 20 per cent.
“I said, ‘OK, suppose I want to keep my leg?’” Buttenham said. “He said, ‘I have to debride it (cut out the dead tissue). You’ll be dragging around a dead leg.’
“So that’s my choice,” Buttenham said. “Drag around a dead leg, or cut it off and have a 50-50 chance of living because it has advanced so far.”
Because the disease had progressed as far as his hip, an amputation would have meant he couldn’t use a prosthetic.
“I’m thinking, ‘OK, no artificial leg. I’m 59 – do I hop around on one leg or live the rest of my life in a wheelchair? I say, ‘OK, cut it off.’”
But between the first and third floor, where the operating room is located, Buttenham had a change of heart.
“I said, ‘Doc, I want to keep the leg,’” Buttenham explained. “He looks at me and said, ‘You’re willing to give up your life for your leg?’”
I said, ‘I don’t want to live without it.’”
“I’ll do the best I can,” is the last thing Buttenham remembers the surgeon saying before going into the operating room.
“I thought I was going to die, “Buttenham recalls. “I really thought it was over.”
When he came to three days later, after two surgeries, Buttenham was visited by his surgeon.
“We saved you, but we don’t know if you’re going to live until (we do) the third surgery,” Buttenham recalls the doctor telling him.
“It’s too late to cut off your leg – if (the bacteria) got into your blood, you’re done.”
Buttenham had to wait 72 hours more, before he found out the good news: he was going to live.
Now, more than a month after being discharged from the hospital, Buttenham said he’s telling his story to raise awareness.
“Maybe it will save somebody else’s life,” he said. “This is a rare disease and it’s deadly.”
According to statistics from 2012, Health Canada estimates there are between 90-200 cases of flesh-eating disease per year in Canada. The disease kills 20-30 per cent of those diagnosed. Necrotizing fasciitis is caused by a number of different bacteria, including group A streptococcus (GAS) – a common bacteria carried by many people on their skin or in their throat. The same bacteria causes strep throat.
However, few people who come into contact with GAS will develop a serious disease.
While Health Canada says scientists don’t know why the bacteria only causes a minor infection in some people, but poses a serious threat to others, risk factors include a weakened immune system and chronic diseases.
However, the agency stresses that event with these risk factors, the chance of getting flesh-eating disease is very rare.
In Buttenham’s case, he was just getting over bronchitis and has borderline Type 2 diabetes.
He said a doctor from Health Canada told him, “Somehow it entered your body through that bite and your body had lined up into a perfect storm.”
While Buttenham doesn’t advocate going to the hospital for any small nick or scrape, he said doctors told him to swipe any such abrasion with hydrogen peroxide and bandage it.
The telltale sign of the disease, he said, is the thin red line growing from a bruise.
“If you see that red line starting to grow, you need to get to emergency immediately,” he urged. “You need to get there and people need to know that. You’ve got to tell them, ‘I’ve got a thin red line growing from a bruise,’ so that they’re aware of it.”
Buttenham noted that, throughout his ordeal, the care he received at Jo Brant was top-notch.
“He literally saved my life,” Buttenham said of his surgeon. “And my leg.
“I couldn’t have gotten better care – they really saved my life.”
In terms of his prognosis, Buttenham said he has a scar from ankle to hip where they removed the infected tissue.
“I’m not going to be a bikini model,” he said, “That’s what the surgeon told me.”
He noted it will still take months before the original site of the infection is healed.
But once everything heals?
“I’m OK,” Buttenham said. “I’m going to have a limp, but I can live with that.”