Facing surgery alone
COVID-19 affects patients who are unable to see family, friends at hospital
NILES — As she was being wheeled into the operating room, the last thing Amy Lacey remembered was hearing “Never Gonna Give You Up” by Rick Astley.
“I ‘Rick-rolled’ right into the O.R.,” Lacey said, laughing.
Lacey was referring to her March 25 surgery at the Cleveland Clinic, where the surgeon took her pancreas, gall bladder, appendix “and other things.”
The battery of procedures was due to Lacey having multiple endocrine neoplasia, type 1, or MEN1, which is a hereditary syndrome that causes tumors within the endocrine system and the duodenum, which is the first part of the small intestine.
No stranger to surgeries, Lacey, 36, has has more than 20 since 2008.
This time around, though, she not only had to deal with pain and navigating life as a new diabetic, but also going through the beginning of the recovery process alone, an hour from her closest family or friends.
Lacey’s story with MEN1 began when she was just over 25 and didn’t know about the inherited condition.
Having a lobectomy of her right lung in 2008, marking her first surgery, Lacey said it wasn’t until a couple years later she found out she had MEN1.
Her twin sister was in nursing school and was learning how to draw blood. She sent her blood away, as was part of the course, and discovered the genetic disorder.
Lacey, who was living in New Jersey at the time, was able to get the genetic testing done, but it can be challenging, she said.
Because her sister had the documents confirming the diagnosis, Lacey was able to have the testing completed. Once it was confirmed Lacey had MEN1, rounds of testing were completed, and a mass was found on her pancreas and spleen.
The benign tumors associated with MEN1 can sometimes turn malignant, she said.
Lacey has two children, both of whom have been tested and do not have MEN1.
“Knowing what you’re up against makes so much more sense in being able to fight it,” she said.
Lacey experienced something new this time around for her care.
Reasoning that the pandemic is holding hospital personnel to a stricter schedule, some employees may have been laid off or even reassigned.
“From what I remember, they were having people who weren’t even normally on my floor where I was recovering,” Lacey said.
Staff from other wards were learning how to help her as they were helping her, “which was surprising because the type of recovery I was in, I had all sorts of drains. I had a feeding tube,” she said.
Just after her surgery as Lacey was learning about changes the staff had to make, she thought, “Do I want to hear this?”
Regardless, she said she still received “really good care there through the pandemic.”
For the hours leading up to the surgery… That’s a different story.
Originally when Lacey spoke with the physician’s assistant the Monday prior to the surgery, she was told she would be able to have one person with her who would be allowed to stay in the waiting room until the surgery was completed. Then, he’d have to leave.
But when Lacey and her husband, Oliver, arrived, they were told that he had to leave.
“I started bawling my eyes out. I was so upset,” she said.
Lacey told the staff she understood the measure was intended to keep everyone safe, but she told them “I wasn’t prepared for this.”
Oliver hugged her and walked away, and Lacey cried.
“At first, no one was paying attention” as she stood in a hallway, alone, crying.
One person overheard her venting to an employee, and that person explained that staff admitting people into the hospital misunderstood, and patients could have someone with them up until surgery.
“I’ll take that over not having him at all,” she said, so Lacey called Oliver who came back and stayed with her as long as he could.
Once the time came for her to go back to the operating room, Lacey was alone for eight days, only having her cellphone to communicate with Oliver, her kids and support system.
Waking up from surgery, Lacey said it was “weird” because wires and tubes were coming from her.
“I remember feeling really upset when I couldn’t have (Oliver) there when I woke up,” she said.
Once she finally got home, Lacey said she’s noticed she’s sicker and weaker than she’s been with other surgeries.
“I’m trying to relearn myself at this point because I don’t know what makes me sick anymore,” she said. “I don’t know what sounds good to eat.”
One thing she’s learned is she would have liked having a variety of beverages stocked up, because her tastes are seeming to change.
“I was loving green tea with Splenda, and then the other day I went to drink it and I smelled it and got nauseaous,” she said.
Now, “a fragile diabetic,” Lacey is learning to adjust as she takes enzymes to help her digest food.
The first few nights, she was afraid to sleep for fear of slipping into a diabetic coma, which she said she’s now realized she’s less likely to experience.
“Everything’s so new to me, I don’t know what to be afraid of and what not to be afraid of,” she said.
Going forward, Lacey said she’ll watch her activities when she’s healed from the abdominal surgery.
Mostly, she’ll watch her blood sugar and how intense activities are. She hopes to get back into the gym and start running with her husband.
“It’s crazy. I’m still learning about how to be healthy,” she said.