Growing up with a mother who is a retired registered nurse, Yolanda gained insights into the workings of the U.S. health care system. Through her own career in government administration, Yolanda became skilled at research and record-keeping, and used those skills to help loved ones manage complicated medical conditions. But even that background could not prepare her for the past 12 years, during which Yolanda says numerous friends and relatives have died because of poorly-coordinated care, hospital-acquired infections and other adverse medical experiences.
Though she was born and raised in the Midwest, Yolanda always had roots in her mother Mamie’s home state of Georgia, and loved spending time there with Mamie’s mother Rosa. Yolanda still remembers a mid-1970s visit when she was in her 20s and first felt like a caregiver to her 60-something Granny Rosa: “She loved her doctor and didn’t want to complain, but she was taking several prescribed medications for each of her symptoms and still seemed to be getting worse, not better. And by the time she was accurately diagnosed with diabetes, and begin taking the proper medication, it already had begun to affect her eyes and her kidneys.”
In the late 1980s, Yolanda moved to Georgia, where she helped care for Rosa and witnessed her decline. “Granny would say she felt like a piece of Swiss cheese,” Yolanda recalls, “because she was constantly poked and full of scars” for numerous shunt surgeries, blood tests, insulin injections and the shunts used for dialysis three times per week to remove waste products that her failing kidneys could not. More than once when Yolanda called, “Granny told me, ‘I’m bleeding like a cut hog’ — the shunt in her leg would leak until the blood would be running into her shoes.” Mamie, (Yolanda’s mom) then moved to Georgia too, to help with her mother’s care.
In fall 1998, Rosa was hospitalized while doctors debated next steps. “My mother, Granny and I heard them arguing,” Yolanda recalls: Rosa’s doctor favored continuing the existing dialysis while another doctor wanted to try the approach called peritoneal dialysis, using a tube permanently inserted in the abdomen. “When Granny’s doctor went out of town, this other doctor did what he wanted to do without notifying or consulting with the family and inserted the tube,” Yolanda says. “And it was downhill from there.”
A primary complication from peritoneal dialysis is the risk of infection from the tube. Yolanda says Rosa was treated for a staph infection, then discharged from the hospital to Mamie’s home, ostensibly no longer infected. Mamie and Yolanda kept an eye on the visiting nurses who brought the equipment to do Rosa’s dialysis: “We kept asking them, ‘Have you washed your hands? Have you sanitized the equipment?’” Yolanda recalls. But the staph infection recurred, she says, sending Rosa back to the hospital.
For several months, Rosa was in and out of the hospital to manage staph infections, and other complications. “She was in there for Christmas, so we decorated her room and had Christmas dinner in her room,” Yolanda says. “The whole thing was a horrible experience, just awful. She really was losing her life.” In March 1999, just days after Easter, Rosa died.
Yolanda says the ordeal with her grandmother left her “very scared — and very leery” during subsequent encounters with hospitals and health care systems. In 2005, Yolanda was standing on a bus on her way to work when a driver that was on her cell phone hit the bus with her car. Yolanda grabbed the handles overhead, which twisted her body, causing injuries including a herniated disk and damaged rotator cups. She took an early retirement from her government job a year later and continues to struggle with the medical, legal and financial fallout from the incident. At the same time, she was trying to help her boyfriend Al — “the love of my life,” she calls him — manage his medical conditions.
Al already had had an angioplasty operation in fall of 1993, he was sent home with pneumonia and just two pages of information on how to care for himself, and had to be readmitted. He was trying to get better, but he kept getting pneumonia. Years later, Al had a stroke in 2005. In 2007, when doctors said he needed another bypass surgery, Yolanda questioned whether Al was well enough to undergo surgery, but doctors scheduled it — only to find, one day prior to the operation, that Al needed not a single but a triple bypass. “When he came out after the surgery, he had a seizure,” Yolanda says. “He never really regained wellness after that.”
“He was in and out of nursing homes and rehabilitation facilities, in and out of hospitals, he kept getting staph infections. Then he began to go into kidney failure so they had him on dialysis. It felt pretty much like the same thing that happened to Granny, toward the end. He died in February 2008.”
When friends and loved ones have died, Yolanda has saved their obituaries. Starting with Rosa’s death in 1999, Yolanda has taken particular note of those who died after health care system encounters that she found disturbing. At last count, those death notices numbered 15. Presently, Yolanda is a health/patient advocate.
“Sometimes I’m just appalled at the way some hospitals and doctors treat their patients,” she says. “It’s just so unfortunate. It just should not happen.”