One woman’s misfortunes show importance of patient voice

October 28, 2014

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One night in January 2010, a weak and despairing Kapka Petrov sat down at a table in her Toronto home and wrote her own eulogy. The next day, she and her husband and their daughter were to fly to Bulgaria in a last-ditch bid for hospital treatment that Kapka had been unable to find in her adopted country of eight years. Bulgaria might not be most people’s first choice for medical salvation but that eulogy lying on the table, and the three plane tickets beside it, bore witness to just how badly the Canadian health care system had failed this particular woman. 
 
The troubles began in April of 2009. Kapka, then 33, was working as a vocational rehabilitation consultant, handling disability management claims for an Ontario government institution. She awoke one morning with abdominal pain so severe she had trouble walking. 
 
At the hospital, after initial tests seemed to rule out gallstones, Kapka was given morphine and sent home with dietary restrictions to calm a suspected inflammation of her pancreas. 
 
She grew sicker and the pain more intense and so she returned to hospital. Within a week she underwent surgery to have her gallbladder removed. 
 
But something was still not right. 

“I paid attention that when I came out from the surgery the other patients that were with me in the room for recovery were able to stand up, to walk around, to move, and to eventually go home with the help of their family members,” Kapka recalls. 

“I could not move. Something was very heavy and pulling wherever the surgery was on the right upper abdominal side.” 

In what was to become a numbingly familiar refrain in the months ahead, the nurses assured Kapka that some post-operative pain was to be expected and could be managed with appropriate medication. 

The next day Kapka’s surgeon informed her that the gallbladder had been full of stones and so inflamed that in removing it he had caused a minor hemorrhage of the liver. He assured her that everything should be fine, though, and she should just stay home and take her painkillers. 

After a few days of escalating discomfort and vomiting, Kapka and her husband Stan, fretful and confused, returned to the hospital to appeal for help. A second surgeon met with them, saying she would do everything possible to prevent a lawsuit. That hadn’t been an issue Kapka had even raised – she just wanted to get well again. 

Kapka underwent more surgery, this time an ERCP liver procedure and a sphincterotomy to release any remaining stones that might be causing the trouble. She was discharged from hospital and sent home with a jar of morphine. 

In the ensuing months, the pain and gastro problems persisted. Her original doctor insisted it was not a surgical issue and instructed her not to bother calling again. Her gastroenterologist filed a report stating that she was much improved. 

“This is when we felt betrayed, confused, and very bitter, because we did not know where to go for help,” Kapka says. 

She and her husband tried another hospital, hoping for a second surgical opinion. After more tests, Kapka was administered a cancer medication for nausea to go along with the continuing morphine. After several visits, she was again told that her problem was a pain management issue. The implications were clear. This was mostly in her head. 

Still, Kapka and her husband pressed for answers. A new MRI, like the previous ones, seemed to indicate everything was fine. Yet Kapka was now so weak she needed help to dress and shower and eat. Her husband almost lost his job for all the time he spent attending to her needs. Her 12-year-old daughter Gloria was an emotional wreck, convinced she was about to lose her mom. 

Her parents back home in Bulgaria were certain Kapka was dying. They urged her to fly there and seek treatment. At the end of January 2010, after penning that sad eulogy, she did so. 

She spent several weeks at a hospital in Sofia, seeing several specialists, before undergoing another round of surgery. The operation took place on March 19, 2010, almost a year from the day of her first surgery back in Toronto. The first words she remembers hearing in recovery where those of her father. 

“I just remember his face coming to me and saying, ‘You made it. They saved you. They discovered horrible things, but you’ll make it. You’re alive and you’ll keep living’.” 

The Bulgarian doctor had discovered a surgical metal clip deep inside Kapka’s abdomen, inadvertently left behind during her original Toronto operation and not visible through standard testing. That clip had been clenching the main nerve of the liver, along with an artery, the ganglion, and a 3.5 cm remnant cystic duct. 

The main nerve of the liver had become so deformed it had to be extracted completely, along with peripheral nerves on the gastro tract that had also been damaged. That had been the cause of months of debilitating pain and frustration. 

“We felt relieved, we felt validated. At the same time, we felt very puzzled how nobody would even click that something so simple can cause so much trouble, and such a deteriorating state of existence where I would be just outsourced to go home and to live on morphine,” Kapka says. 

Two years later, during her slow, continuing recovery, Kapka suddenly fell ill again and required an emergency hysterectomy. Once again, she was wracked with severe pains, this time in the pelvic and rectal regions. Her doctors prescribed painkillers and suggested anti-depressants. Six months later, a surgeon concluded Kapka was suffering from damage to the pudendal nerve and gave her a nerve block injection, which led to partial paralysis on her left side. 

Kapka felt herself sliding into the same trauma she’d endured earlier. Is it any wonder that she wound up in Bulgaria again? After surgeons there found a huge endometrial nest in her left ovary, as well as severe burns to the sigmoid colon and urinary tract from the laparoscopic hysterectomy, is there any wonder that Kapka Petrov is a devout skeptic when it comes to Canadian health care delivery? 

“It’s obvious, mistakes happen in the medical community,” she says. “My expectation as a patient is that you don’t run away, that as a doctor you come back and you help me to get better instead of closing yourself in your own insecurity shell.” 

Kapka has drawn deeply from her own misfortunes in lobbying for the importance of the patient’s voice. As a member of Patients for Patient Safety Canada, she has tapped into an enriching reserve of empathy and support. 

“In Patients for Patient Safety Canada I found a safe place to share my experiences as they are,” she says. “I found a lot of comfort in just listening, and not judging me, and not questioning me.” 

After everything, Kapka remains a remarkably driven and upbeat advocate for improved health care in her adopted country. 

“Every morning upon waking up, I embrace the opportunity to breathe, to be alive and I’m grateful for being on this earth. I have a very purpose-driven life, which it to be self-sufficient, to love and help my family, and to support the community in ways that I feel that they can benefit by my support.”