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'Er, shouldn't you be dead?'

When Virginia Hand runs into old acquaintances, she can see their astonishment and confusion, the gears turning in their heads. They're trying to come up with a tactful way of asking: "Aren't you supposed to be dead?" Hand, 58, thought she would be by now. In a lawsuit she has filed against two Tucson doctors, she says she was told almost two years ago that she had end-stage pulmonary hypertension and six months to live. That diagnosis alone wasn't so bad, says Hand, a nurse who has long suffered from lupus. She believed she could beat the new condition. After all, she'd rallied over and over from her bouts with lupus. But she says awful news came in October 2002 when a doctor diagnosed her with multiple myeloma, a form of blood cancer. She was told she had as little as three weeks to live, her lawsuit says. Two dreaded diseases? Hand gave up. She planned her own funeral, down to the tea sandwiches. Ministers visited her at home to give last rites. Friends said goodbye. Her sons grappled with the pending loss. "It was like life ended. It was like we weren't even a family anymore. All we talked about was medicine," Hand said in an interview this week. "I just wanted it to end because I didn't want to put the family through anything anymore." She says she started taking morphine, stopped taking care of herself and in many ways stopped living. She waited for death to come. And waited and waited. Her family thought her demise might come by Halloween, so they canceled a Halloween party. Then they thought the end would come by Thanksgiving. That came and went. Maybe Christmas. Surely by New Year's Day, they thought. The turning point came around Valentine's Day. Hand was actually starting to feel better. Problems with breathing and fatigue had faded, even though she stopped treating her lupus. A seizure sent her to the hospital, which led to a diagnosis by a different doctor - that Hand had neither fatal disease. That she still had lupus, but death was not imminent. Now, Hand's lawsuit against her earlier doctors contends they diagnosed something she did not have, the reverse of most medical malpractice lawsuits. She and her husband, Bruce Hand, filed the lawsuit July 1 in Pima County Superior Court against Dr. Karen D. Smith, El Dorado Medical Associates and Dr. Christopher Puca. Multiple phone calls to Smith, Puca and El Dorado Medical were not returned. On Friday, a woman who answered the phone at Smith's office said the doctor would have no comment on the case and asked not to be called anymore. Defendants were served with copies of the lawsuits last week and have not yet filed their formal legal responses. The Arizona Medical Board Web site shows clean records for Smith and Puca. Neither has had to pay damages as the result of other lawsuits. Two complaints against Puca were deemed unfounded and details about those complaints were unavailable, said Lisa McGrane, a board spokeswoman. Hand's lawsuit says the doctors failed to conduct sufficient tests, consult appropriate specialists or take "corrective action" after the alleged error was discovered. As a result, she says her lupus was exacerbated. She says she became dependent on narcotic drugs and that she suffered alienation and loss of affection from a son because he thought she was a "raging hypochondriac." She says she suffered severe dental deterioration because she stopped caring for herself. In general, a doctor trying to diagnose a patient gathers data by asking questions about the patient's chief complaint, symptoms, medical history, medications and family medical history, and assessing the patient's support system, said Christian Moher, a Tucson doctor not involved in this case. Specialists' opinions might be sought. Some diseases, like multiple myeloma and lupus, share signs. Anemia is a common sign of both conditions, as it is with many other kinds of disease. But there should be no confusion between lupus and multiple myeloma, said Dr. Steven Ketchell of Arizona Oncology Associates. The two are "completely different diseases." Ketchell said a bone-marrow test is not always needed in diagnosing multiple myeloma. He said doctors look for how quickly the levels of certain proteins in the blood rise. With rapidly rising protein levels, "there's really no other disease to explain that." Ketchell said patients can protect themselves from incorrect diagnoses by reading or researching their symptoms or disease online. The best advice for patients is to simply ask for a second opinion. He advises his own patients to do the same. "If you're not sure, do it," Ketchell said. Hand believed there was a finality when doctors diagnosed her, said her lawyer, Herbert Beigel. Beigel said there's no evidence to indicate Hand may have misled doctors in describing her symptoms. He declined to furnish copies of Hand's medical records, saying they are private and that it has yet to be determined which documents will be used in court. The records include written assessments as well as results of "blood tests and other kinds of tests," Beigel said. Beigel called Hand's case the reverse of a typical "failure to diagnose" lawsuit. Tom Slutes, a Tucson lawyer who defends doctors in medical malpractice cases, said sometimes "subtle things are missed." Slutes, who is not involved in Hand's case, said he has heard of just a few similar cases after practicing law in Arizona more than 30 years. He isn't certain Hand could win huge damages. "A medical malpractice case, by definition, is a doctor not complying with a standard of care. This causes injuries to the patient. You don't really injure patients when you tell them something they don't really have," Slutes said. "The only damages the patient has in the case you're talking about is the worry about dying." Slutes said he thought the doctors could argue that Hand's losses were balanced out because she went from "depression to euphoria pretty quickly." But Hand said there was no euphoria. After the pulmonary hypertension diagnosis, she said, her doctors recommended home hospice care, which would allow regular visits from medical staff and delivery of medicine. After the second fatal diagnosis, she said, the hospice service offered counselors. She was given pain medications - "I just lied there and took morphine and went to sleep" - and a little booklet with advice for terminally ill patients. The little booklet makes her wince now. "It's just horrible to look at," she said. The eventual good news was a relief, but she said it took months for her to accept it, and months to realize she was angry, feeling she wasted almost nine months. Hand said her son, Bryan, "still believes I made it all up and believes I'm a raging hypochondriac." Reached in California this week, he declined to comment. She said she still lives under a fear that somehow she is going to die in mere days or weeks. Occasionally, she will see somebody she knows in passing, somebody who heard she was going to die but hasn't kept in touch since. They do get around to asking why she hasn't died. "We say, 'We've taken care of things,' " her husband said.