While many lawmakers spent the summer at raucous town halls to hear complaints about health care, Rep. Carolyn McCarthy learned firsthand what works, and what doesn't, in the health system - as a patient.
On July 28, the Democrat from Mineola underwent surgery at Winthrop University Hospital to fuse three vertebrae in her spine, ending nearly two years of severe pain.
But with that success, McCarthy said she also encountered parts of the health system that need to be changed: redundant paperwork, missed communication and indecipherable medical bills.
And she said that if her surgeon hadn't acted on a hunch and insisted on a post-surgery CT scan, doctors wouldn't have detected blood clots in her lungs or a mutant gene that makes her susceptible to clots.
"Trying to look at it as a nurse, I understood everything being done," she said. "But once you become a patient you feel like you're starting to lose a little bit of control."
In her brightly lit office on Capitol Hill, McCarthy discussed her back surgery recently and the lessons she learned.
Her experience, she suggested, confirmed her general support for the House health bill, including the public option.
Sitting at a table, the 65-year-old McCarthy looked relaxed and healthy, though she wore a back brace and a blue tubelike bone-growth stimulator she must don for four hours a day.
Career as nurse played a part
She was no ordinary patient.
A nurse for 30 years before winning a House seat in 1996, she took an active role in her care. She skipped rehab, for example, and went home instead for a six-week recovery with a nurse and a sister's help. On hot days, she exercised by walking inside King Kullen.
She also enjoys perks as a member of Congress: good coverage under a Blue Cross Blue Shield standard plan (she said she pays $2,100 a year now, but it will go up 17 percent in January) and access to a full-time House doctor (for $500 a year).
Coping with realities of care
Yet even with top-notch coverage, McCarthy said she had to cope with the realities of medical care and with issues she hopes Congress can cure.
The pain in her back, hip and leg began in January 2008, she said. Despite many tests and treatments, she still hurt badly.
"I cried," she said. "I broke down in front of the doctor."
It wasn't until last April, she said, that a Washington doctor diagnosed stenosis in her third, fourth and fifth vertebrae, a painful compression of the spine, and dropfoot, indicating nerve damage.
Once home, McCarthy turned to Dr. Nancy Epstein, the neurosurgeon who treated her son Kevin after a gunman wounded him and killed her husband on the Long Island Rail Road in 1993.
In June she began seeing specialists to prepare for surgery. For each one she had to fill out a medical history form: five doctors, five forms. Unlike most patients, McCarthy carried her medical records and a health history with her to each doctor.
Now, she said, she has high hopes for technology: "One of the most important things is going to be high-tech," she said.
Digital records essential
Medical records need to be digital, so they can be updated easily and sent from one doctor's computer to another, she said. People should travel with health data on a digital card, to help new doctors avoid mistakes or unnecessary testing.
As a patient, McCarthy found some doctors had out-of-date blood tests, or in one case an inaccurate report, leading to some miscommunication.
By July, she had been fitted with a back brace to wear after the surgery. Since her pain began, McCarthy has had two MRI's, five CT scans, nine X-rays and a dozen blood tests. She estimated the expenses at $300,000 to $400,000. The surgery alone cost $197,000.
Insurance covered most of it, but she paid $3,500 in drug co-payments and emptied a $2,500 medical savings account.
Last week, as she leafed through two folders thick with bills, McCarthy complained it's hard to connect charges to doctors and procedures. "Everything is in code," she said.
Medical bills must be streamlined, understandable and in digital form, she said. "Get rid of all this paperwork."
On July 28, Epstein successfully operated on her.
Coverage denials must end
Finding no clear symptoms and following procedure, McCarthy said, a radiologist decided she didn't need a test for blood clots, which can cause a stroke or heart attack.
McCarthy said Epstein, who luckily happened to be in the hospital, "demanded that I have a CAT scan . . . I didn't have the classic symptoms, so she was going on a hunch, because my father and my son both had blood clots."
Epstein, who said she also based her decision on an X-ray and McCarthy's history of smoking, won the argument. McCarthy said a scan found a clot in each of her lungs, much to the radiologist's surprise.
The radiologist apologized, she said. He put a filter in a vein to prevent blood clots from going into her heart. Another test found a rare mutant gene, factor V Leiden, that makes her and her family susceptible to clots. The family now takes precautions.
McCarthy said her insurer can't cancel her policy, but others would deny coverage because she has a pre-existing condition, and that must end.
The incident also made her cautious about putting too much faith in "appropriate quality-of-care" standards, urged by some health reformers.
"That's a fine line a doctor has to make," McCarthy said.
Noting the disagreement between the radiologist and her surgeon, she asked, "What if she had lost that fight?"
