Kingston man waits years for surgery to relieve painful condition

On Sunday night, Bill Bagyan went to sleep in an Ottawa hotel room, hopeful that the next dayhe'd finally find relief from the years of agony he'sendured due to a painful urological condition.

On Monday morning his phone rang. It was the Ottawa Hospital, telling him hislong-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 liveson Ontario disability insurance paymentsdue to injuries from a car accident, was diagnosed with urethral stricture disease, ascarring 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.

Infections continued

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 urologistrecommended he see anOttawa doctorwho was alsotrained in the procedure.

In the spring of 2016, Bagyanmet withDr. Conrad Maciejewski, an Ottawa urologistwho said he would perform the roughly four-hour surgery.

"Hetold me he was going to expedite the surgery and I wouldn'thave 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.

Years-long wait for surgery unacceptable, Kingston man says

5 years ago

Duration 1:34

Bill Bagyan says the four-year wait for surgery has been physically and emotionally difficult.

'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, inOctober 2017,Maciejewski'soffice 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,Maciejewskicalled Bagyanback.

"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."

Bagyansaid Maciejewski assured him the surgery would happen soon.

'It's embarrassing'

His pain intensifying, Bagyanhad to have a catheter inserted directly intohis 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 yougo out because if you have too much urine in the bag and it starts sloshing, and you're wondering if everybody hears you orif 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."

Wife concerned

Bagyan's wife, Ann, was grown increasingly concerned abouther 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. RobSiemens, a urologist at Kingston General Hospital, saysurethral 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 areemergencies, 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."

New hope

In August, Bagyanwas 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 wasMaciejewski'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, cancellingthree and a half hours before the surgery."

The doctor's assistant told him they're now working toward January. A Kingston urologist whoperforms 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.