It is every patient's worst nightmare. You are prepped for surgery, you're given a general anesthetic and you drift off into sleep. But then you regain consciousness prematurely, during the surgery.
That's a horror story that became all too real for Donna Penner one day back in 2008. The Altona, Manitoba mother of two inadvertently woke up during abdominal surgery, victimized by a rare phenomenon called anesthesia awareness. She's been struggling with post-traumatic stress disorder ever since.
While swimming back to consciousness in the hospital that day, Donna remembers feeling relief that she'd come through the operation okay. Then she heard two words that shook her to the core: "Scalpel please."
Donna was lying on an operating table, listening to a surgical team preparing to slice into her abdomen. She couldn't move — she'd received muscle relaxant paralytics as part of the anesthetic cocktail. She couldn't cry out, due to the oxygen tubes down her throat.
"I tried to scream. I tried to cry. I couldn't even make tears," Donna says. "I could do absolutely nothing." Lying there, fully aware, Donna felt every excruciating incision.
"I felt the surgeon moving the instruments around, I felt my organs being pushed around as he examined each and every one. I heard the comments he made as he was operating," Donna recalls.
"I knew I was in this for the duration. As all this was happening, I thought I was going to die. The pain was horrific. I don't have words to describe how much it hurt. Believing that I wasn't going to live through it, I thought about my husband, Brian, I thought about our children, and I said my mental goodbyes to all of them. After I did that, I tried to think of other things to do to occupy my mind and try to work through the fear and the pain. I sang to myself, I prayed, I screamed. Anything to get through it."
Compounding the terror, her racing heartbeat was overwhelming the ventilator that was breathing for her. As a result, Donna felt as though she was suffocating during the entire time — 90 minutes — that she was intubated. Quite understandably, she was a sobbing, shouting wreck when the paralytics finally wore off and she was able to speak again.
"The first words out of my mouth were, 'I was awake, I felt him cut me.' The two nurses were still in the room along with the anesthesiologist. The surgeon had already left. I looked at their faces as I said this and not one of them said a word to me. They just looked at each other with these shocked expressions on their faces."
Wheeled to a recovery room, a distraught Donna informed her husband Brian what had just occurred. The two of them demanded to see the anesthesiologist. He had already left the hospital but was called back in to Donna's room.
"I told him again what I had just been through. I repeated the same thing I had told him in the OR and he would not look at me, he would not come near me," Donna says. "After I finished, he simply shrugged his shoulders and said, 'It happens sometimes.' Then he turned and he walked out of my room."
Donna and her husband were stunned by the cold response. When they spoke to the surgeon he displayed far more empathy and compassion. Donna says she needed to hear some validation, some acknowledgement of what had just happened to her. The surgeon confirmed he'd said each of the comments in the operating theatre that she remembered hearing. He even had no need to tell her his surgical diagnosis — she'd already heard it while lying on that operating table.
Donna and Brian are still dealing with the devastating consequences of her experience that day. It has been a life-altering event for a couple who have been together for 30 years.
In the short term, Donna had to heal physically while still walking around each day with a gaping emotional wound. She and Brian felt as though they were butting up against an "almost visible wall of silence" from their hospital when they pressed further for some kind of formal some explanation of what had happened. She felt angry, confused and abandoned, anxious and depressed. Follow-up surgeries triggered terrible memories and crippling apprehension.
In the long term, the psychological harm has taken a toll. Donna was diagnosed with PTSD a few weeks after that nightmare surgery and she's been in therapy ever since.
"Before all this happened I was a very active person. I loved to laugh. A real practical joker I guess you could say," Donna says.
"Life is very different for me now. I have a great deal of difficulty focusing. I have a lot of short-term memory issues, concentration issues. I had to leave my job because the PTSD just got to be too much and I couldn't handle the stress." Brian finds he must forever be on the lookout for trigger words or situations that might bring on an anxiety crash.
"It's been a roller coaster," he confesses. "For me it's hard to know if it is going to be a good day or is it going to be a bad day. I never know when I wake up in the morning. "It can change two three times during the day. All of a sudden she has a flashback and the emotions kick in. Then two hours later the grandkids come over or something, and it's a real sunshine again." The comment draws a smile from his wife. Her three grandchildren have helped her get through a lot of rough days, Donna agrees.
"I always say they don't care if nana is broken. It doesn't matter to them if I can't remember."
Donna and Brian joined Patients for Patient Safety a few years back in order to connect with other people who had gone through a similar traumatic experience. In attempting to rebuild her broken trust in the health care system, Donna has made it her mission to tell her story as often, and as widely as possible. She has spoken to anesthesiology students at the University of Manitoba and hopes to see reforms to the medical curriculum to promote more patient safety, empathy and compassion.
Says Penner, "I want people to learn. I want physicians to learn. I want anesthesiologist to learn. I want nurses, the frontline staff, the administrators, the governance people — I want them all to learn. I want them to know that this kind of thing can, and does happen. It happened to me. I want them to know that it matters to the people that it happens to. That we are more than just a name or a file number. We are real, we are patients, we have families. And that when something happens, caregivers should be prepared to respond in an appropriate manner. Even if it's only 'I'm so sorry,' that means so much to the patient that has been traumatized or harmed in healthcare. If I can make a difference in one person's life, I will gladly retell my story a thousand times."