How my doctor saved my life
Sylvia Allen lay unconscious in a San Francisco hospital emergency department, stopped at the age of 30 by yet another cardiac arrest. The sporadic collapses began at age 20 for the Angie’s List member who was diagnosed first with epilepsy, then a prolapsed mitral valve. The prescribed medications, however, didn’t stop the episodes.
As the emergency department resident at the University of California San Francisco Medical Center puzzled over the results of Allen’s electrocardiogram, cardiologist Dr. Melvin Scheinman walked by, looked at the EKG and delivered a lifesaving diagnosis: Long QT syndrome, an abnormal heart rhythm that in 1984 remained an obscure and often fatal condition.
Allen, who’s now 58 and living in Portland, Ore., says she owes her life to Scheinman. “It is very unlikely the resident or anyone else would have figured it out,” she says. “I would have continued to have cardiac arrests and one of them would have killed me.”
Thirty percent of Angie’s List members polled online credit a doctor with saving their lives or the lives of a loved one. Members who’ve suffered from cancer, heart problems, chronic diseases and traumatic emergency situations say they’re here today thanks to family doctors, oncologists, cardiologists and many others in the health care field. Although the details are unique, what the stories have in common are doctors and support staff demonstrating not only technical skill and knowledge but also compassion in the midst of crisis.
Scheinman, a pioneer in studying the electrical systems of the heart, remembers Allen with fondness. He became her cardiologist after the diagnosis, but downplays his role that night 28 years ago in the ER and instead shifts the focus to patient education. “This is a genetic disorder,” he says. “That should be the main message. If there’s a sudden death in your family at a young age, there may be a genetic predisposition and you should be evaluated.”
Knowing your own and your family’s health history can help you avoid a life-threatening situation. But although 96 percent of Americans agree that health histories are important, only 30 percent say they’ve actually compiled one, according to a survey by the Centers for Disease Control and Prevention.
That history should include documentation of current ailments and symptoms, says Dr. David Newman-Toker, who’s an associate professor of neurology and otolaryngology at Johns Hopkins University and chairman of the annual Diagnostic Error in Medicine International Conference.
It’s estimated up to 80,000 people die each year due to misdiagnosis, Newman-Toker says. One of the top reasons is the doctor’s failure to compile a history of symptoms. “Studies show the history of the patient’s symptoms constitutes anywhere from 60 to 80 percent or more of the diagnosis,” he says. Good doctors will draw this out of the patient, Newman-Toker says. They listen, ask questions, explain their logic and aren’t afraid to express uncertainty. However, he notes, it’s always in the patient’s best interest to be prepared. “Record your symptoms and recount them accurately but succinctly,” he says and recommends keeping a diary.
“Anything you can do to give the physician a better sense right off the bat enhances their ability to make an accurate diagnosis.”
Red flags include dismissive, arrogant doctors or conversely, nervous Nellies. “They don’t seem to know what they are doing.” he says. “They say, ‘It could be a million different things and we have to order a lot of tests’ without explaining why your case is different or unusual.”
Angie’s List member Debi Sapp of Johns Creek, Ga., says a misdiagnosis could have killed her. The week before Thanksgiving 2010, she began vomiting and suffering leg and shoulder pain. Sapp went to the local emergency room, where she says doctors didn’t test her blood and sent her home with pain medication. “They didn’t seem to think it was a big deal,” she says.
Two days after being sent home, her condition continued to decline and she began to hallucinate. An ambulance rushed Sapp to highly rated Gwinnett Medical Center - Duluth. Sapp credits general surgeon Dr. Miles Mason III and the Gwinnett staff with the correct diagnosis that saved her life. Sapp had Group B streptococcus, a blood-borne bacterial infection that plunged her into septic shock. Dr. Mason’s nurse of 31 years, Jenny Mincey, says he’s unable to comment. “His day starts at 6 a.m. and ends at 11 or 12 [at night],” she says. “He really cares about his patients. God uses physicians to touch people’s lives, and he worked a miracle in Debi’s life.”
The infection, which Sapp believes she may have contracted during a manicure and pedicure at a salon, attacked her lungs, causing acute respiratory distress syndrome. She remained on a ventilator for three weeks. Her insurance covered most of her 44-day hospital stay, Sapp says, since she had already spent $3,000 of her $5,000 deductible, prior to the emergency.
She’s just thankful for quality care. Nurses prevented bedsores by putting Sapp on an air-filled bed, fed her cans of Ensure nutrition drink by hand, and one nurse even spent almost two hours brushing mats out of her hair so she wouldn’t have to cut it off. “That is a little thing, but it is huge,” she says. “That says a lot about someone.”
Her hospital stay extended through the holidays, but she says Mason never missed a visit. “Christmas Eve, Christmas, New Year’s, every day Dr. Mason came and saw me.
When doctors like Mason keep an eye on patients even after the surgery, it promotes continuity that may reduce one of the most common causes of hospital complications: errors related to delays in treatment or diagnosis and miscommunication among staff.
“One place where there is always danger to patients is during the handoff, when the patient is being handed off from one caregiver to the next or from one place to the next,” says Lisa McGiffert, director of the Safe Patient Project, a campaign created by the nonprofit Consumers Union that lobbies for patient safety.
She recommends asking about what systems a hospital has in place to prevent errors and infection that could result in death. Many hospitals, for example, now use barcodes on patients’ wristbands and on all medications to prevent errors.
The U.S. Department of Health & Human Services posts hospital complication rates and mortality rates, which can be viewed online.
Sometimes maintaining a relationship with a primary care provider also can help patients avoid errors and get the correct diagnosis. “The main advantage is the physician has a sense of whether the current complaints are out of character,” Newman-Toker says.
That familiarity also can work against doctors, however, because they may be more likely to assume a new symptom is related to a known condition, he adds. Patients can be more proactive by asking pointed questions, he says: “Are we sure disease X is the cause of my symptoms? Could the change in my response to treatment mean the diagnosis isn’t correct or that there’s more than one problem?”
Encouraging dialogue can help catch issues early and can also save consumers money by avoiding the ER. Depending on the problem, the average fair market price — the amount providers typically accept as payment in full — ranges from $114 for a 15-minute exam in a doctor’s office to $234 for an extensive problem, approximately a 40-minute exam, according to Healthcare Blue Book. ER visits range from $381 for a very minor issue to $3,076 for a life-threatening one not including an overnight stay.
Petranda Gyftopoulos of Baltimore credits her personal connection with hematologist/ oncologist Dr. Peter Ledakis at highly rated Mercy Medical Center with saving her life. He had been treating her for chronic anemia for three years, and during a checkup she asked him for a second opinion.
Her gynecologist had recently diagnosed her with endometrial hyperplasia and told her there was a 20 percent chance of it being cancerous. Balancing six weeks of missed work and six months of recovery against a 20 percent chance, she’d already made up her mind to postpone surgery.
“I asked [Dr. Ledakis’] opinion because I knew he was an oncologist,” she says. “I didn’t know he had access to my test results, but he pulled them up through the Mercy computer system.” She says he didn’t equivocate in his response: “This is not good, Petranda. This is cancer.” The resulting operation showed that indeed she had Stage 1B endometrial cancer. “I believe he saved my life,” says Gyftopoulos, who estimates her out-of-pocket expenses totaled about $1,200.
“He had the experience to say, ‘This is cancer,’ when everyone else was saying 20 percent chance.”
The diagnosis also resonated with her because Ledakis had always treated her with compassion, she says, whereas her gynecologist came across as cold and clinical.
Ledakis attributes his approach to his personality. “I went to one of the best places in the world for training and they don’t really teach you those things,” says Ledakis, who did an oncology fellowship at the National Institutes of Health. “I see some very bright doctors who don’t connect well [with patients].” But, he understands, too.
“It’s the nature of medicine,” he says. “We don’t make the schedule. It usually gets made by the practice or hospital and they allocate 10 or 15 minutes per patient. That’s not reality.” In addition, his field of oncology involves daily contact with tragedy.
“Some doctors feel more effective if they remain detached,” he says. “But I think it’s better if you try to communicate and connect. We all suffer in different ways.”
Angie’s List member Sharon Lockwood of Phoenix found that combination of skill and compassion in gynecologic oncologist Dr. Matthew Borst of Arizona Oncology in Phoenix, both highly rated.
Diagnosed in 1999 with Stage 4 of a rare uterine cancer, endometrial stromal sarcoma, Lockwood says she’s alive today because of Borst. Less than 40 percent of people with this type and stage of uterine cancer survive five years, according to the American Cancer Society.
Borst attributes her survival to a multidisciplinary approach. The pathology lab identified the cancer, which enabled him to assemble a surgical team including himself and a urologist — the cancer also involved her bladder — and several resident surgeons at Banner Good Samaritan Medical Center in Phoenix. “Nobody can be completely expert at everything,” Borst says. “That’s why I’m a big fan of teamwork.”
Although surgery removed Lockwood’s cancer, it came back in 2004. She has spent about $35,000 out of pocket on care, with insurance covering the remainder. Today, she says her cancer is kept in check by the drug Femara, most often used for breast cancer. “Femara knocks every bit of estrogen out of your body,” she says. “If the pills stop working, the cancer will grow.”
Borst also credits Lockwood’s success to her own tenacity and the support of her family. “She is remarkably resilient and her husband, Lucius, is an absolute rock,” he says. “He researches stuff, keeps notebooks, asks good questions. They make quite a good team to go through something this scary.”
He encourages his patients to follow the Lockwoods’ example and do their own research. He walks his patients through three progressively in-depth websites: WebMD, the National Comprehensive Cancer Network and cancer. gov. “I don’t think cancer doctors are put off by family questions and research,” he says. “It puts me as a practitioner in the position of helping them explore the information on their own.”
He says Lockwood’s story inspires him. “Sometimes as a provider, I get so involved in the cases that aren’t going well that sometimes I lose perspective. My efforts are consumed in the areas of difficulty. For survivors to tell their story is quite uplifting for me, but more importantly for patients. It gives everybody hope.”
Now 55, Lockwood will hold her first grandchild this spring. Amid the joy of new life she’s grateful for her own life and for quality care from Borst. “He’s such a good man,” she says. “I’ve been given this extra time and I’m very thankful. My oldest daughter graduated from college and I got to see that. Now I get to see the birth of my granddaughter. I feel blessed.”