Kingston man waits years for surgery to relieve painful condition
Bill Bagyan suffers from urethral stricture disease
- After CBC published Bagyan's story, he was scheduled for surgery on Nov. 13.
On Sunday night, Bill Bagyan went to sleep in an Ottawa hotel room, hopeful that the next day he'd finally find relief from the years of agony he's endured due to a painful urological condition.
On Monday morning his phone rang. It was the Ottawa Hospital, telling him his long-awaited surgery had been cancelled yet again.
That call was just the latest in a seemingly endless series of disappointments for the 57-year-old Kingston, Ont., man.
I felt forgotten and trivialized.- Bill Bagyan
In 2013, Bagyan, who lives on Ontario disability insurance payments due to injuries from a car accident, was diagnosed with urethral stricture disease, a scarring in or around the urethra. It results in a narrowing or blocking of the passageway through which urine flows out of the body.
A year later, with bladder infections becoming more frequent, Bagyan had a catheter inserted into his bladder to deal with the infections and to relieve the discomfort.
Between 2014 and 2018, Bagyan was catheterized a dozen times, usually for two weeks at a time, but the infections continued.
While on a waiting list for surgery to relieve his condition in 2015, Bagyan's Toronto urologist recommended he see an Ottawa doctor who was also trained in the procedure.
In the spring of 2016, Bagyan met with Dr. Conrad Maciejewski, an Ottawa urologist who said he would perform the roughly four-hour surgery.
"He told me he was going to expedite the surgery and I wouldn't have to be in discomfort for too long," Bagyan said
In December 2016, Maciejewski's office informed Bagyan he could expect the surgery sometime between the following spring and fall.
'Misplaced' on list
Over the next nine months, Bagyan said he called the doctor's office repeatedly to inquire about the surgery, leaving messages that weren't always returned. Then, in October 2017, Maciejewski's office assistant called with some bad news.
"She said, 'Oh, sorry, we misplaced you on the list,'" Bagyan said.
She told him he'd get a call in the new year about a new surgery date, but the call never came.
In April 2018, Bagyan called the hospital's department of patient relations. Within a few days, Maciejewski called Bagyan back.
"He was very apologetic," Bagyan said.
But Bagyan was angry. "I was misplaced before, how could this happen again?" he asked. "I got bumped, and I was mad, I was hurt and I was disappointed."
Bagyan said Maciejewski assured him the surgery would happen soon.
His pain intensifying, Bagyan had to have a catheter inserted directly into his bladder through an incision in his abdomen in May 2018, but that led to new infections.
"It's not been a lot of fun over the last 18 months," he said. "It's embarrassing when you go out because if you have too much urine in the bag and it starts sloshing, and you're wondering if everybody hears you or if they see the tube sticking out by your foot."
The pain, the infections, the waiting — it was all getting him down.
"My family has a cottage that I could spend the whole day just floating and swimming," he said. "But I can't do that because of the chance of infection, and I can't really play with my grandchildren because I worry they might pull out the tube."
Bagyan's wife, Ann, was grown increasingly concerned about her husband's changing mood.
"It's a nightmare. Sometimes his anxiety and depression gets the best of him, and it's maddening," she said. "Feeling forgotten is almost the worst thing you can think of."
Finally, in March, Bagyan was given a firm surgery date: June 5.
"I was ecstatic, and I phoned my kids," he said. "I was happy, really happy."
But two days later, Maciejewski's assistant called again to say the surgery had been cancelled because the specialized operating room wasn't available.
"I felt forgotten and trivialized," he said. "I'm a middle-aged man who can't use his penis."
Surgery 'on the margin'
Dr. Rob Siemens, a urologist at Kingston General Hospital, says urethral stricture disease is fairly common, but there are "less than a handful" of physicians in Ontario who perform the reconstructive surgery.
It's obviously terrible and you shouldn't wait that long, but I'm not surprised.- Dr. Rob Siemens
"It's obviously terrible and you shouldn't wait that long, but I'm not surprised," he said of Bagyan's ordeal. "Most of the time it's elective surgery, but it's terrible because many men have a catheter and it's obviously a massive disruption."
Siemens says the surgical priorities at Ontario hospitals are emergencies, cancer, and hip and knee replacements.
"For better or worse, this [surgery] is on the margin, I suppose, and it's difficult to fight for resources for it."
In August, Bagyan was assured he'd undergo the surgery on Nov. 4.
"I'm going to be a fixed person after all this time," he recalled thinking. "I was going to be healed up by Christmas, and I could play with the grandchildren."
The couple rented a car and rented a hotel room in Ottawa. When the phone rang at 7 a.m., it was Maciejewski's assistant. The surgery had been bumped yet again because of another emergency.
"[The hotel is] a 14-floor building, and I thought, how quickly is it to get to the roof? I am so angry and I can't believe it, cancelling three and a half hours before the surgery."
The doctor's assistant told him they're now working toward January. A Kingston urologist who performs the surgery suggested he also put his name on a waiting list there.
Hospital promises investigation
After the CBC contacted the Ottawa Hospital about Bagyan's case, he received an apologetic call from the department of patient relations promising an investigation.
The Ottawa Hospital told CBC it can't comment on specific patient cases.
"Our patient relations department, whose mandate it is to work with patients, families and providers, will ensure that all information is gathered from the appropriate groups, and that a solution is found," the hospital said.
Bagyan said he told the department he wants the investigation to be transparent so no one else has to go through the same thing.
"I may be just another person complaining, but something's got to get fixed," he said.