When I play, it feels like a massage: Synesthesia as an adverse drug reaction

Prof. Sherrilyn Roush woke up one morning seven years ago to discover that the left side of her body had gone numb, with a stroke. The day before, she had taken a prescription decongestant with ingredients that were suspected of causing strokes in young women. The decongestant had caused a lesion the size of a lentil in her mid-brain. Five months later, the Food and Drug Administration took the drug off the market.

Sherrilyn did not realize that her stroke would lead to sensations that few people had ever experienced. She began to feel tingling on her body in response to sounds. Today, more than ever, she feels sounds on her skin.

The first time it happened, she heard the voice of an announcer on a local FM station. "I felt an unpleasant sensation on my left thigh, left arm, the back of my shoulder and even the outside of my left ear. It was the kind of icky feeling that uniformly washes over you at a scary movie,"she said. "I had to stop listening. It made me cringe."

Psychologists at Rice University have tested her over the last seven years, observing how her brain's wiring has reorganized. Their article appears in the November issue of Annals of Neurology. They call her brain’s odd mixing of the senses "acquired synesthesia," and attribute the rewiring to the stroke.

Some sounds set her teeth on edge. Others evoke pleasant feelings on her skin. The soft sound of water bubbling is "soothing, almost like a massage on my skin."

Recently, she learned how to exploit her oddly mixed up senses. "I took up the string bass," she said. "Most people get pleasure from this instrument. It is huge. It has a soft deep sound. But I get more pleasure from this instrument, right here in my left arm. When I play, it feels like a massage."

She has learned to exploit the effects of her condition, in a way reminiscent of patients whom the neurologist Dr. Oliver Sacks described in "The Man Who Mistook His Wife for a Hat." Indeed, Sacks found that music had an exceptional power to help that severely disabled man to anchor himself in the world.

Advice to people who are greatly affected by their disease: Look for innovative ways to make the best of your disease, as Sherrilyn has.

Browse for related stories in the index at the very bottom of this page, or read a story of a patient-entrepreneur who made the best of her disease.

Thanks to Sandra Blakeslee for the source article in the Dec. 25 issue of the NY Times.

I decided to report a colleague who had problems: Lawsuit and countersuit on reporting of medical malpractice

Dr. Ernst Heilbrunn's letter to the editor of the New York Times:

Your editorial states that almost half of those doctors "who had direct knowledge of impaired or incompetent colleagues, or who knew of significant medical errors, had failed to report them."

Twenty years ago, I was the director of a clinical department at a metropolitan area hospital. I decided to report a colleague who had problems. The hospital administration agreed and disciplinary action was started, and eventually successfully concluded.

It took me four years to settle the multiple lawsuits against me personally and as director of the department.

Based on my experience, I believe legal protection should be provided so that doctors who do their duty are not penalized with long and expensive lawsuits. If this were done, reporting would increase.

Advice: Google the name of your physician and the terms "lawsuit" and "court."

Browse for related stories in the index at the very bottom of this page, or read a story about impaired physicians.

Thanks to Dr. Heilbrunn, whose letter appeared in the NY Times of Dec. 29.

Should I accept this new version of my husband?: Chronic pain management

Dear Annie,
My husband and I have been married for 20 years. He's had health problems during his time, but has always managed his pain.

Last year, he went to a pain management clinic and they prescribed narcotics. He takes them every day and is in a fog every night. He has gained weight, become sloppy, and stopped caring how I feel.

I have suggested counseling, but he refuses, saying he has no problem with our marriage. I have seen a counselor myself, but am totally torn up by this. I still receive attention from other men. I don't want to spend the rest of my life with someone who is continually numb. I have a solid job offer in another town close to family. Should I stick it out and accept this new version of my husband?
--Signed, Falling Out of Love

Annie's Advice:
Your husband doesn't want to stop taking this medication because he feels good for the first time in years. However, if he is "in a fog," he may be overmedicated, and his doctor should be told. If you've been with him for 20 years and this latest phase has lasted only 12 months, please stick it out and give him time to adjust his medication. If that doesn't help, insist on counseling for your sake so he can understand how close he is to losing his marriage.

Browse for similar stories in our index at the very bottom of this page, or read a pain management story.

Thanks to "Annie" for the letter and her response, published in Annie's Mailbox, in the Dec. 27 issue of the Boston Globe.

A normie wandered in unawares: Coffee, karaoke, and group therapy

Harold Jonas, 52, kicked a heroin habit two decades ago in the beachfront city of Delray Beach, Florida, far from his native Philadelphia, and decided to stay. He married a fellow addict, raised a family, earned a doctorate and opened a halfway house for substance abusers making the transition from residential care to independent living.

Steadily, he and his wife, Dawn, expanded their cottage industry. They organized an association of halfway house owners and opened KoffeeOkee, the coffeehouse-karaoke bar.

About 20 residents of Delray Beach recently gathered at the café one night for a weekly counseling session. One "normie" – their word for the 65,000 year-round townspeople – wandered in unawares and was allowed to stay. First-timers sat at the periphery of the circle, avoiding eye contact with others.

Advice to people struggling with drug habits: You can have fun and friends without harmful drugs.

Browse for related stories in the index at the very bottom of this page, or read one of our Delray Beach stories.

Thanks to Jane Gross for the source article in the Nov. 16 issue of the New York Times.

I did it to myself, and so I better do everything I can to get out of it: Missed diagnosis of COPD

The crisis came five years ago for Jean Rommes, on a Monday morning when she had planned to go to work but wound up in the hospital, barely able to breathe. She was 59, the president of a small company in Iowa. Although she had quit smoking a decade earlier, 30 years of cigarette smoking had taken their toll.

After several days in the hospital, she was sent home tethered to an oxygen tank, with a raft of medicines and a warning: "If I didn't do something, life was going to continue to be a pretty scary experience."

Jean has chronic obstructive pulmonary disease, or C.O.P.D., a progressive illness that permanently damages he lungs and is usually caused by smoking. She has both emphysema and chronic bronchitis, as well as asthma. She had symptoms for years before receiving a correct diagnosis.

She began smoking in college in the 1960s, when she was 18. People whom she admired smoked, and it seemed cool. She smoked for 30 years.

When she quit in 1992, it was not because she thought she was ill, but because she realized that she was organizing her day around chances to smoke. But she almost certainly was ill. She was only 50, but climbing a flight of stairs left her winded. From what she found in medical dictionaries, she began to suspect she had lung disease.

By 2000 she was so short of breath that she consulted her doctor about it.

He gave her a spirometry test. In one second, healthy adults should be able to blow out 80% of the total they can exhale; her score was 34%, indicating moderate to severe lung disease.

"I don't know whether he knew," she said of her doctor. "I suspect he did, but he didn't call it emphysema. He put me on a couple of inhalers and he called it asthma. I sort of ignored the whole thing because the inhalers did make me feel better. I started to gain some weight, and things got progressively worse."

She cannot help wondering now if she could have avoided becoming so desperately ill, if she had only known sooner what a dangerous illness she had.

The turning point came in February 2003 when she tried to take a shower and found that she could not breathe. The steam all but suffocated her. She managed to drive from her home in Osceola, Iowa, to her doctor's office, struggle across the parking lot like someone climbing a mountain and collapse, gasping, onto a couch inside the clinic. Her blood oxygen was perilously low, two-thirds of normal, even when she was given oxygen. The hospital was next door, and her doctor had her admitted immediately.

She had Type 2 diabetes as well as lung disease, and her doctor told her that losing weight would help both illnesses. But she said, "He made it pretty clear that he didn't think I would or could."

Motivated by fear and anger, she began riding an exercise bike, walking on a treadmill, lifting weights at a gym and eating only 1,200 to 1,500 calories a day, mostly lean meat with plenty of vegetables and fruit.

"I came to the conclusion that if I didn't, I probably wasn't going to be around," she said. "I wasn’t ready to check out. And my husband was beginning to show the signs of Alzheimer's disease."

By December 2003, her efforts were starting to pay off. She went from needing oxygen around the clock to using it only for sleeping, and by January 2005 she no longer needed it at all. She was able to lower the dosage of her inhalers and diabetes medicines. By February 2005, she had lost 100 pounds.

The daily exercise also helped her deal with the stress of her husband's illness.

"I had no clue that exercise would do as much for ability to breathe as it did," she said, adding that it helped more than the drugs, which she described as "really pretty minimal."

"Exercise is absolutely essential, and it's essential to start it as soon as you know you have C.O.P.D.," she said.

"I will tell pretty much anybody that I smoked for 30 years, and I quit in 1992." Maybe it's why I've attacked this the way I did. OK, I did it to myself, and so I better do everything I can to get out of it. We all do things in our lives that are stupid, and then you do what you can to fix it."

Advice to former smokers: Exercise will help your lungs function better.

Browse for related stories in the index at the very bottom of this page, or read one of our COPD stories.

Thanks to Denise Grady for the source article in the Nov. 29 issue of the New York Times.

A second opinion for Lou Gehrig's Disease

Gaetan Guertin, a native of Quebec, Canada, sought a subspecialist's opinion after his first neurologist suggested the diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease). Gaetan began to experience leg fatigue when he was 55 and soon developed foot weakness and muscle atrophy. In an interview with Neurology Now, Gaetan said the expert's approach was more confident. "She had a lot of experience and knowledge and was more open,” he said. He added that since the neurologist worked at a research and training hospital, the diagnostic testing could proceed more promptly.

Advice: If you're unclear about a diagnosis, consider getting a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a story about a man with Lou Gehrig's disease.

Thanks to Dr. Orly Avitzur for the source article in the November/December, 2007 issue of Neurology Now.

The insurer had initially refused to pay: A liver transplant lawsuit

Nataline Sarkisyan was a very sick teenager. She had been diagnosed at 14 with leukemia. Her cancer went into remission after two years of chemotherapy, but it returned last summer.

The day before Thanksgiving, she received a bone marrow transplant from her brother. Unfortunately, a complication caused her liver to fail.

Her parents asked CIGNA, their insurer, to authorize a liver transplant. CIGNA initially refused to pay for it, saying it did not cover experimental or unproven treatments.

Four doctors at UCLA submitted a letter to CIGNA on December 11 that urged the insurer to reconsider, saying that in Nataline's case the liver transplant would be neither experimental nor unproven. They cited the survival rate in such cases.

The University of California at Los Angeles Medical Center told the family on Dec. 14 that a liver was available, if the family could pay a down payment of $75,000, in view of CIGNA's denial of authorization. The family couldn’t afford it.

On Thursday, Dec. 20, following a rally by 150 nurses and community members outside its office in suburban Los Angeles, CIGNA changed its decision. But it was too late; Nataline died a few hours later.

Nataline's father has retained a lawyer, Mark Geragos, to bring a lawsuit against the insurer, asserting the initial refusal of the liver transplant contributed to Nataline's death.

Advice: Check the customer satisfaction ranking of your insurer, and switch if their rankings are low.

Browse for related stories in the index at the very bottom of this page, or read a story about the affordability of a liver transplant.

Thanks to Alicia Chang for the source article in today's Boston Globe.

Every day was a bonus: Heart transplant survivor

John Scripter's heart was failing. Without a transplant, he had six months to live, doctors at Massachusetts General Hospital in Boston said. With a transplant, he had a chance to live five years.

John, then a 45-year-old manual laborer from Greenville, New Hampshire, asked his cardiac surgeon how many heart transplant he had performed. The answer: None. John would be the first.

John underwent the novel surgery in 1985, giving him 22 more years of life. He died Friday, after spending the afternoon with one of his nine children.

"After five years, every day was a bonus," said his wife of 46 years. "It was a day that he might not have had. We lived every day like it was the last. It was still scary because it was a whole new avenue. And he got a second chance. He was so fortunate. We had our good times, we had our bad times. He said, 'You know, I've had it all. It's wonderful. I've seen everything. I've seen my kids grow up. I've seen their kids.'"

Life wasn't easy; John was not able to return to work. He battled heart infections caused by his heart medications, said his cardiac surgeon. He lost his right leg to infection in March.

But he never gave up, said his wife Linda. "He said, 'Look, fit me for an artificial leg and I’ll keep going.'"

Advice: Live every day like it's the last one.

Browse for related stories in the index at the very bottom of this page, or read a story from a blog about zestful living in the bonus round.

Thanks to Anna Badkhen for the source article in yesterday's Boston Globe.

Then he walked out of the room: A neurologist's misdiagnosis

When Todd Bischoff developed a tremor at age 46, a neurologist diagnosed essential tremor and gave him two prescriptions to fill. "He said to let him know if I wanted to take the medications. Then he walked out of the room without explaining what essential tremor was or telling me anything about the drugs," Todd says. This was the first red flag. Then, when Todd went home and researched the condition, descriptions of Parkinson's disease seemed to fit his symptoms much better. Todd sought a second opinion, and his next neurologist confirmed the diagnosis of young-onset Parkinson's.

Todd's second neurologist sent him to a Parkinson's disease specialist because he felt that the early age of onset warranted special consideration. Although he had to pay out of pocket, Todd ultimately received his care from a movement disorder subspecialist because he felt that the doctor's expertise and superior level of skill were worth it. "I'm much more confident in dealing with my condition now and know that if I have questions, my neurologist is available to assist me," he said.

Todd believes teamwork is critical for those dealing with a progressive neurodegenerative disease. "This is your health we're talking about – you have to advocate for yourself. If you don’t, you could potentially suffer from poor care, or even the wrong care," he says. "You need to solidify your diagnosis so you know exactly what you're dealing with. Otherwise, how can you most effectively treat what you have?!"

Todd runs a support group (PDTalks.com).

Advice: If you don't have confidence in the diagnosis, get a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a second opinion story.

Thanks to Dr. Orly Avitzur for the source article in the November/December, 2007 issue of Neurology Now.

Never again in California will someone be kicked to the curb: Universal health care on International Migrants Day

California moved significantly closer to broadly expanding health insurance coverage yesterday, when the Democratic-controlled Assembly passed legislation that Gov. Arnold Schwarzenegger backs.

Three other states – Massachusetts, Vermont and Maine – have passed similar plans in recent years. The California plan mimics Massachusetts' by requiring most individuals to obtain basic health coverage and requiring insurers to offer policies regardless of a consumer's age or health status. The plan would use a sliding scale for premiums and tax credits to make coverage affordable. Children who are in the U.S. illegally could receive coverage, though adult illegal immigrants would not be eligible.

Assembly Speaker Fabian Nunez said, "There is hope through this bill that never again in California will someone be kicked to the curb by an insurance company."

This is a significant step, just in time for International Migrants Day, which is celebrated today, Dec. 18.

Browse for related stories in the index at the very bottom of this page, or read a health care for all story.

Thanks to Kevin Sack for the source article in today's NY Times.

I would end the calls blubbering with gratitude: The psychology of kidney donors and recipients

Dr. Sally Satel's story:

My kidneys were failing. On a steamy day in August 2004, I went to the doctor for a routine checkup. I was feeling fine, but a basic test revealed that my kidneys were shot, functioning at about 16% of normal capacity. One nephrologist I went to predicted that within roughly six months to a year I would need to begin dialysis, three days a week, for four debilitating hours at a time.

In October 2005, I stumbled across a web site called MatchingDonors.com that helps link potential donors and recipients. I wrote only a short self-description.

Three days later, a Canadian man called. He told me he considered becoming a donor five years ago when he heard through his church about someone who was failing on dialysis. That was the most personal thing I learned about him. Well into November, we were in regular contact, mostly about logistics – whether my insurance would pay for his tests, whether he could take time away from a project he was working on, and so on. I ended the calls blubbering with gratitude, and he would tell me to stop.

Until both of us were snug in our adjoining operating rooms, I could never relax – everything was tentative, conditional, and prone to collapse.

About a week before Thanksgiving, the Canadian went dark. By then I was fatigued most of the time and fluid was pooling in my ankles. I took four antihypertensive drugs a day and had injections of a hormone that stimulated my body to make more red blood cells. Dialysis was closing in.

Around Christmas, he finally called. He swore he was still "raring to go with the transplant." A few days later, my young transplant coordinator, Julie, called him. Straight talking and bright-eyed, she spoke to him in a way I could not. "We need to know how to proceed," she told him firmly. "There is no time to spare. Can you be here in January for the surgery?" He conceded that the campaign he was working on was too unpredictable. Julie said he seemed to feel genuinely bad about reneging, but he did not tell her to convey that disappointment to me, and I never heard from him again.

I was astonished at the Canadian's … what? Negligence, cowardice, rudeness? It was a sickening roller-coaster ride: hope yielding to helpless frustration, gratitude giving way to fury. How dare he reduce me to groveling and dependence? Yet I assume he intended no such thing. I think the Canadian was actually quite devoted to the idea of giving a kidney – just not necessarily now or to me. He had led me on for weeks, and would have continued doing so had Julie not pushed him. Meanwhile, my kidneys were deteriorating, and I didn't have time for more cycles of commitment, silence and rejection.

Just before the Canadian withdrew, another potential donor had contacted me. She was the right blood type; even better, she was the right personality type. On March 4, 2006, I became the proud owner of Virginia Postrel's right kidney. She was out of the hospital within three nights; I was home after seven, and our recoveries were uneventful. I require no drugs except medication that prevents my body from rejecting the new organ.

Altruism is a beautiful virtue, but it has fallen painfully short of its goal. We must experiment with offering potential donors other incentives for giving, not necessarily payment but material reward of some kind. Unless we stop thinking of transplantable kidneys as gifts, we will never have enough of them.

Advice: Sally was able to discover her kidney condition through a routine physical exam, which gave her the time to find a good donor. Get a physical exam when your doctor suggests it.

Browse for related stories in the index at the very bottom of this page, or read a kidney transplant story.

Thanks to Sally Satel for the source story in yesterday's New York Times Magazine.

More than about asterisks and cheating: Steroids, major league baseball, and high school suicides

Taylor Hooton was a junior in high school, a tall, thin pitcher on his baseball team in Plano, Texas. His coach told him he needed to get bigger for his senior year to compete effectively, so Taylor took steroids, as did many of his teammates. He rapidly gained more than 25 pounds. And he began to display the aggressiveness that is characteristic of steroid abuse. He confessed his "aggressive depression" to his brother.

He experienced the depression in coming off the steroids. He committed suicide, leaving the vial of steroids wrapped in an American flag.

His father, Don Hooton, said, "Taylor was a top-notch student. He, like so many, was doing it because he thought it might make him better."

Today we read about the Mitchell Report on the use of steroids by 89 of major league baseball's top players – Barry Bonds, Roger Clemens, Andy Pettite, Ken Caminiti, Jose Canseco, Mo Vaughn, Miguel Tejada, Jason Giambi…

As Taylor's father said, "This is more than about asterisks and cheating; it's about the lives and health of our kids."

Advice to parents of high school athletes: Become an impassioned patient advocate like Don Hooton.

Browse for similar stories in our index at the very bottom of this page, or read an athlete’s story.

The source story comes from today’s New York Times and the London Times of Dec. 1. Thanks, Owen Slot.

So many children: Flu vaccines

The New Jersey Public Health Council voted on Monday to require all children in New Jersey who attend preschool or are in day care to get annual flu vaccinations. This makes New Jersey the first state in the nation to require these immunizations.

Dr. Robert Morgan, a Monmouth County pediatrician, said that over the years he and his colleagues had "seen so many children not only suffer but die from diseases that could be immunized against. That could have been prevented simply by administering a vaccine."

Dr. Eddy Bresnitz, the New Jersey Deputy Commissioner of health and the state immunologist, agreed, citing the 600 children hospitalized in the state each year for influenza.

But some parents of autistic children link a mercury compound, thimerosal, in the vaccines to their children's autism. For example, Anne Downing believes her 7-year-old daughter's autism was tied to vaccines for the flu and pneumonia that the girl received in utero and as a baby, respectively. Many experts, however, say no solid evidence supports this view.

Dr. Bresnitz says most vaccines contain no, or negligible amounts of, thimerosal. In any event, he says, parents can request thimerosal-free formulations of the vaccine.

Advice: Vaccinate your kids against the flu. If you're concerned about the risk of autism, ask for a vaccine without thimerosal.

Browse for similar stories in our index at the very bottom of this page, or read a sad flu vaccination story.

Thanks to Jill Capuzzo for the source story in the Dec. 11 issue of the New York Times.

Like a bartender who serves a drunk customer: The physician's liability for drug side-effects

David Sacca, 75, was a very sick man, with emphysema, high blood pressure, and metastatic lung cancer. He was taking oxycodone, Zaroxolyn, prednisone, Flomax, potassium, Paxil, oxazepam, and furosemide – some of which can cause drowsiness, dizziness, and fainting.

While driving in Spring 2002, David passed out and drove off the road, hitting and killing a ten-year-old boy, Kevin Coombes, who had been standing on the sidewalk with a friend.

Yesterday the Massachusetts Supreme Judicial Court ruled that David's doctor could be sued for failing to warn his patient about the side effects of the drugs and for failing to warn him of the danger of driving while under the drugs' influence.

In writing the court's lead opinion, Justice Roderick Ireland compared the doctor's liability to that of a bartender who serves a drunk customer.

Almost every drug has side effects. Drowsiness is a common side effect of many prescription drugs. This ruling greatly expands physicians' liability for the prescriptions they write every day.

Advice: Ask your doctor and pharmacist about the likely side effects of your drugs.

Browse for related stories in the index at the very bottom of this page, or read a story of the sad consequences of a different kind of expectable side effect, from Zyprexa.

Thanks to Liz Kowalczyk for the source article in today's Boston Globe.

A jolt of pain wrenched him from sleep: Cardiac rehab

Last February, a jolt of pain wrenched him from sleep. It was a heart attack. Ninety minutes later, he was at Massachusetts General Hospital, where doctors cleared a potentially lethal clog from one of his heart arteries.

Then they told Arthur Manjourides, 66, it was time to change his life. They gave him prescriptions for both pills and cardiac rehabilitation. Now he's 55 pounds lighter, and has lower cholesterol – and fewer hours at work.

"I wanted to get better. I wanted to get healthy. I would rather not be alive than have to be crippled by not doing things," he said.

A study in the October issue of Circulation by Dr. William Stason and others said few older survivors of heart attacks (14%) and few heart surgery patients (31%) enter cardiac rehab, though many more would benefit from it. Bypass surgery and artery-clearing procedures don't actually cure patients; they only address the most pressing symptoms of heart disease. Lifestyle changes and medications fix the underlying problems.

Advice to advocates for heart attack and heart surgery patients: Ask the doctor whether cardiac rehab would help.

Browse for related stories in the index at the very bottom of this page, or read a heart story.

Thanks to Stephen Smith for the source article in today's Boston Globe.

It's not who he is: Misdiagnosis of autism

Jeremy is a 20-year-old young man who lives in Columbia, Missouri, and works on the "Mizzou" college campus as a volunteer, cleaning classrooms.

From the looks of him, you can't tell Jeremy has autism. He has a high functioning form called Aspergers. Doctors didn't diagnose him until he was 16. Before then, Jeremy said he had complications stacked up against him from doctors not knowing much about autism.

"They put me on several drugs and misdiagnosed me several times," said Jeremy. "Those were probably the most catastrophic years of my life, being misdiagnosed, being on those drugs, being treated poorly by the school, of their ignorance of autism, of my condition."

Now "his autism does play a part in his life, plays a big part, but it is not who he is," said his mother, Robin. "He is someone who has dreams and aspirations, who has many skills, who has a kind heart, who likes to volunteer, likes to help people... that is who Jeremy is."

Despite the difficulties he faces, Jeremy has no tolerance for those who want to "cure" autism.

"It's insulting to me because it is saying, you know, when people say, 'I am not going to try to understand this, I just want to cure it.' When it is actually something neurological. It is hard-wired into your brain. There is nothing you can do about it. That is just the way it is. They just want a cure, they don't want to understand it. They don't need to treat it. They don't want to deal with it. It is a lifelong thing," said Jeremy.

Advice to people whose drugs aren't helping: Find other people in your situation; they might help you learn a more accurate diagnosis.

Browse for similar stories in our index at the very bottom of this page, or read another delayed diagnosis story.

Thanks to Ashley Reynolds for the source story.

A ridiculous situation shortly after surgery: Two residents' tonsillectomy care of a toddler

Blogger Dominic Carone, PhD, writes of the care and communication from two polar opposite residents who treated his young son after a tonsillectomy in "A Tale of Two Residents," here.

Advice to patients in teaching hospitals: Ask the resident to bring in a senior physician if you feel uncomfortable about the resident's treatment.

Browse for similar stories in our index at the very bottom of this page, or read a resident's error story.

Nine years of HIV treatment, but no HIV: A lawsuit about misdiagnosis

Testimony has begun in a lawsuit brought by a Fitchburg, Massachusetts woman who received nine years of HIV treatment after being misdiagnosed with the virus. Audrey Serrano is seeking unspecified damages from several doctors and clinics that were involved in her treatment.

One of those doctors told a Worcester Superior Court jury Tuesday she began treating Audrey in 1994, about 18 months after another doctor had diagnosed her with HIV. The doctor testified she had no reason to question the original diagnosis because Audrey convinced her she had the virus that causes AIDS.

Audrey claims in her suit that she suffered a variety of physical ailments because of AZT and other harsh medicines she took daily because of the diagnosis. She says the emotional distress led to depression.

Advice to those receiving a diagnosis based on a lab test for a dread disease: Verify the diagnosis. Many lab tests have high false-positive rates.

Browse for similar stories in our index at the very bottom of this page, or read another false positive story.

Thanks to the Associated Press for the source story on Dec. 4.

Evel Knievel: Hepatitis from a blood transfusion

Evel Knievel, the red-white-and-blue-spangled motorcycle daredevil, died yesterday at age 69. He had been in failing health for years, suffering from diabetes and pulmonary fibrosis, an incurable condition that scarred his lungs.

He had undergone a liver transplant in 1999 after nearly dying of hepatitis C, probably contracted through a blood transfusion in one of his 14 surgeries to repair bone-shattering spills.

Now the blood supply is safer, and hepatitis C from transfusion is less of a worry.

Advice to patients undergoing surgery: You or your patient advocate should double-check that the donor's blood type matches yours.

Browse for similar stories in our index at the very bottom of this page, or read another blood transfusion story.

Thanks to Mitch Stacy for the source story in today's Boston Globe.

She had lost custody of her children: Recovery from alcoholism

Jennifer Boeth Whipple, 53, is a journalist who arrived at Delray Beach, Florida, in the clutches of alcoholism in 1998. Jennifer said she "took to heart" during her third effort at rehabilitation – "that some people have to change their lives completely to maintain their sobriety."

She had lost custody of her children.

She stuck around in Delray Beach, following a carefully phased program known as the Florida Model, from residential treatment to a halfway house and a "recovery job" at Home Depot. Eventually she bought a condominium and worked for an art dealer.

For six years, she said, she "felt very safe here, surrounded by people who'd been through what I’d been through" – detoxing in the same roach-infested apartments, cycling through recovery centers familiar to New Yorkers, like Silver Hill or Four Winds.

Then a year ago, "after I'd gotten my sea legs," she returned to New York City, where her son lives with his father.

Advice to people struggling with a drinking problem: It might take more than one attempt to get and stay sober.

Browse for related stories in the index at the very bottom of this page, or read another Delray Beach recovery story.

Thanks to Jane Gross for the source article in the Nov. 16 issue of the New York Times.

Blue flames shot up from her midsection: A surgical error

During her gallbladder surgery at a hospital on Boston's north shore four years ago, a flash fire ignited on the abdomen of Antoinette DiPhillipo.

Immediately after the gallbladder surgery, her surgeon had rubbed an alcohol-based cleaning solution on her abdomen to help prevent post-op infections, wiped it clean, and then decided to remove a mole there with a hot cautery instrument. Blue flames immediately shot up from her midsection – "similar to a flambé," the surgeon told the state public health investigators. The sterile draping also ignited.

Antoinette suffered painful first- and second-degree burns, even though Operating Room staff had quickly patted down the flames and pulled off the flaming sterile drapes.

Advice: All surgery is risky. Specify beforehand what your surgeon should and should not operate on.


Browse similar stories via the index at the very bottom of this page, or read another gallbladder surgery story.

Thanks to the Boston Globe for this story.

A reassuring influence: Ambulance emergencies

Question:
While watching my son's track meet, I saw his friend Jay collapse on the field. I rushed over to help. Jay had been stung by a bee and was having a severe allergic reaction. Thankfully, he had an epinephrine injector with him. I identified myself as an RN, administered the epinephrine, and asked bystanders to call 911 and Jay's parents. He responded well to the drug.

Meanwhile, his older brother ran up and said that their parents weren't at the meet. As the coach tried to contact the parents, emergency medical technicians (EMTs) arrived. Both boys demanded that the older brother be permitted to ride with Jay to the hospital. The EMTs were reluctant, but the coach and I insisted that keeping the children together would help keep Jay calm.

Later, I learned that the parents felt I'd overstepped my authority by allowing the older brother to ride in the ambulance. Should I have done something differently?

Signed, A.W., Pennsylvania


Columnist Susan Salladay's Answer:

A family presence is calming in an emergency if the individuals are in control emotionally. In this case, it sounds as if the older brother was a reassuring influence and that keeping the boys apart might have added to Jay’s distress, so you probably made a good call.

Advice: In an emergency, a family member should go along in the ambulance.

Read one of our allergic reaction story, or read more from the source article in the November issue of Nursing2007 by Prof. Susan Salladay.

Nothing to lose but the price of a stamp: Al-Anon

Dear Ann Landers,

It is Sunday afternoon, and our 13-year-old boy went to a ball game, the 10 – and 12-year-old girls are in the neighbors pool, and my husband went to his favorite tavern to get drunk….A few years ago I would have been crying my eyes out, or pouring out my anger to a friend on the telephone. But today I am calm, content and very happy with my life. Why? Because I listened to you and joined Al-Anon. Every woman who is married to an alcoholic must at some point decide whether she is going to allow his problems to defeat her or learn how to live with it….Please, Ann, keep telling people about Al-Anon. It's a life-saver…in every sense of the word.

-Gage Park member

Ann Landers replied, "Not a week goes by that I don't receive at least three or four letters from readers in praise of Al-Anon." She gave the Al-Anon address for those who wished to write for literature, adding, "You have nothing to lose but the price of a stamp."


Advice for family members of problem drinkers: Check out Al-Anon.

Read an Alcoholics Anonymous story, or read more from the source book, Inside Alcoholics Anonymous, by Non Robertson.

She has broken two ribs from coughing: C.O.P.D. and prednisone side effects

For many, trying to control chronic obstructive pulmonary disease (COPD), rather than be controlled by it, is a daily struggle. Diane Williams Hymons, 57, a social service consultant and therapist in Silver Spring, Maryland, has had lifelong problems with bronchitis, allergies and asthma. In the last five or ten years her breathing difficulties have worsened, but she was told only three years ago that she had COPD. It motivated her to give up cigarettes, after smoking for more than 30 years.

"I have good days, and days that aren’t as great," she said. "I sometimes have trouble walking up steps. I have to stop and catch my breath."

She is "usually fine" when sitting, she says.

Her mother, also a former smoker with chronic lung disease, has been in a pulmonary rehabilitation program. Diane's doctor has not recommended such a program for her, but she has no idea why. They have discussed surgery to remove part of her lungs, which helps some people with emphysema, but she said no decision had been made yet because it is not clear whether her main problem is emphysema, or asthma. She is not sure what her prognosis is.

She has been taking prednisone for years, something both she and her doctor know is risky. But when she tries to cut back, the disease flares up. She has many side effects from the drug.

"My bone density is not looking real good," she said. "I have cramps in my hands and feet, weight gain and bloating, the moon face, excess facial hair, fat deposits between my shoulder blades."

She has broken two ribs just from coughing, probably because the prednisone has thinned her bones, she said. She went to a hospital for the rib pain last year and was given so much asthma medication to stop the coughing that it caused an abnormal heart rhythm. She wound up in the cardiac unit for five days, and now says "never again" to being hospitalized.

Her doctor orders regular bone density tests.

"I know he's concerned, like I’m concerned," she said, "but we can't seem to kind of get things under control."

Advice to long-time smokers: Ask your doctor if you might have C.O.P.D.

Browse for related stories in the index at the very bottom of this page, or read a C.O.P.D. story.

Thanks to Denise Grady for the source article in today's New York Times.

She and her husband Jack were in for a difficult few months: MyPatientLine

When Karen Rynes gave birth to her twins four months early, she and her husband Jack were in for a difficult few months. The newborns were in very critical condition, and spent the next four and a half months in the NICU at Baylor University Medical Center.

Jack and Karen live in Dallas, but since they are originally from the Midwest and have lived all over the country, most of their contact with their concerned friends and loved ones was by telephone. This meant that, each day, after a long and emotionally taxing visit to the hospital, Jack and Karen returned home and had to field phone calls from family and friends who wanted updates on the status of the twins.

This need to repeat the day's news and events to multiple parties each day was emotionally taxing for the Rynes family, adding difficulty to their already stressful lives. After a tough day, the last thing they wanted was to relive the day's events multiple times over.

They set up an 800 number service with voicemail capabilities that would allow friends and family to call in for a recorded a message every day with the updated status of the twins. Family and friends could listen to these updates and leave their own messages of support and encouragement for Jack and Karen to hear at their leisure.

With the 800 number in place with help from Jack's company, Jaduka, tensions were eased for Jack and Karen. "We were now able to update friends daily and spend more time with our boys," said Karen. "The system also helped ease the minds of our friends and loved ones, who called in for updates without worrying about disturbing us."

Karen's 92-year-old grandmother also came to know the benefits of this system, as she never went to sleep without first calling and listening to the day's update.

Jack and Karen have made the service available to help other families. "We felt the need to help other families facing the unexpected trauma of an extended hospital stay for any purpose, whether due to premature babies, cancer, or even war injuries, so we created MyPatientLine," said Jack.

MyPatientLine is a phone service that offers an expanded version of the messaging system that Jack and Karen used to get through their difficult period. Some hospitals have already started offering it to their patients. The Connecticut Children's Medical Center, for example, plans to provide MyPatientLine to patients upon admission to their hospital.

In the same way that this service helped them, Jack and Karen hope that MyPatientLine can help others.

Advice: Consider MyPatientLine or other ways to update family members in an emergency.

Browse for similar stories in our index at the very bottom of this page, or read another preemie story.

Thanks to Nick Krefting for the interview of Karen.

Its third wrong-site surgery this year: Errors in brain surgery

The Rhode Island Department of Health reprimanded a Rhode Island hospital yesterday, and fined it $50,000, for its third wrong-site surgery this year. Doctors at the hospital had performed four wrong-site surgeries in six years, all involving brain surgery.

An 82-year-old man was in the neurosurgical intensive care unit (ICU) for brain surgery on Friday. A CT scan had shown bleeding on the left side of his brain. A resident (a physician in training) began drilling into the right side of the patient's head. The resident realized the mistake, closed the initial incision, and performed the procedure on the left side.

As a result of the latest incident, all intra-cranial neurosurgical procedures will have an attending physician present for the entire procedure, hospital officials said.

Advice for patients at teaching hospitals: Add and initial a note on your patient consent form that requires a real physician to accompany the resident throughout your surgical procedure.

Browse for related stories in the index at the very bottom of this page, or read another wrong site brain surgery story at the same hospital three months ago.

Thanks to Liz Kowalczyk for the source article in today's Boston Globe.

I never even had the symptoms of a stroke: Wrong information in patient charts

Dr. Richard Botney is a 52-year-old anesthesiologist who works at Oregon Health and Science University. Several years ago, he visited a specialist to check out a bothersome lump in his cheek. He took some medicine, and the problem went away.

Out of curiosity, he thumbed through his chart and was surprised to find a comment from the doctor saying he had a stroke.

"I never even had the symptoms of a stroke. No visual changes, no weakness, no numbness, nothing," he said. He flagged the mistake to his specialist, but didn't pursue it, as the error hasn't affected his insurance or disability coverage.

At the Serma web site for physicians, at least two other doctors wrote about times when they had noticed wrong information in their own charts when they themselves had been patients. The chart of one doctor with multiple sclerosis incorrectly said he had multiple brain tumors, which caused him trouble in getting reimbursement from his insurer for the necessary medications. A second doctor who had had several operations was shocked to see the results of physical exams and other tests that had never been performed; presumably they pertained to a different patient.

Whatever their causes, these errors are often hard to correct. Like a resilient weed, they resist permanent removal. The reason: Later "progress notes" by a doctor can refer back to an earlier one. In today’s electronic era, a doctor can cut and paste an incorrect comment into another progress note, so even if one is removed, another remains to spawn more in the future. Patient, Beware!

Advice: Ask to see your chart, and make sure the information is accurate.

Browse among related stories, indexed at the very bottom of this page, or read a more serious wrong patient error story.

Thanks to Alicia Chang for the source article in the Nov. 23 issue of the Atlanta Journal-Constitution.

I danced around the truth to make the drug reps happy: Effexor and its side effects

The Story of "Dr. Drug Rep:"

On a blustery fall New England day in 2001, a representative from Wyatt Pharmaceuticals came into my office and made me an offer I found hard to refuse. He asked me if I'd like to give talks to other doctors about using Effexor XR for treating depression. I'd get $500 for one-hour "Lunch and Learn" talks at local doctors' offices, or $750 if I had to drive an hour.

I had a busy private practice in psychiatry, specializing in psychopharmacology. I was quite familiar with Effexor, since I had read recent stories showing it might be slightly more effective than Prozac, Paxil, Zoloft, and other selective serotonin reuptake inhibitor (SSRI) anti-depressants.

I [agreed and that year I] made about $30,000 in supplemental income from these talks.

[A question from the audience of one of the talks I gave made me realize that] I was willing to dance around the truth in order to make the drug reps happy. Receiving $750 checks for chatting with some doctors during a lunch break was such easy money that it left me giddy. Like an addiction, it was very hard to give up.

I had not lied – I reported the data exactly as they had been published. But still, I had spun the results of the study in the most positive way possible. I realized that in my canned talks, I was blithely minimizing the hypertension risks of Effexor. There was another problem: one of Effexor's side effects. Gradually it became clear that there were "withdrawal" symptoms.

A recent study found that one-fourth of U.S. doctors receive drug money for lecturing to physicians or helping market drugs in other ways.


To his credit, Dr. Carlat now publishes a medical education newsletter for psychiatrists that critically assesses drug research and marketing claims. The newsletter is not funded by the drug industry.

Doctors want to learn about the most recent drugs so they can help patients, and they more readily believe other doctors than laymen drug reps. Doctor may know best, but money talks.

Advice: Ask your doctor's office manager if the doctor gets money from a drug company.

Browse for related stories in the index at the very bottom of this page, or read an Effexor misuse story.

Thanks to Dr. Daniel Carlat for the source article in today's New York Times Magazine.

They brushed off my questions: Incorrect medical decision-making for a thyroid problem

I spent months being treated for acid reflux-like symptoms, and I found myself seeing doctor after doctor. They all treated me for acid reflux – a commonly diagnosed problem of stomach acid flowing backward from the stomach into the esophagus – and brushed off my questions asking if my problem couldn't be related to a thyroid condition. There is a history of thyroid problems in my family and my instincts kept telling me my problems were related to my thyroid gland. The doctors continued to tell me I just had acid reflux and I should keep taking the "little purple pill." I couldn't understand how I could so suddenly develop acid reflux. After all, I had always been able to eat anything I wanted and now even eating cereal and drinking water made me hurt.

After seeing several different local specialists and undergoing many, many tests, I referred myself to an endocrinologist (someone who specializes in thyroid diseases) at a large medical center for another opinion. Within five minutes of meeting this endocrinologist, he was convinced all of my symptoms were related to being hyperthyroid (too much thyroid hormone). He explained to me that when you are hyperthyroid all the systems in your body are hyper (overworking) and can give you symptoms I was experiencing like acid reflux! I was never so relieved – I had finally found someone who believed that my symptoms were related to a thyroid problem. Further testing confirmed his diagnosis, and surgery was scheduled to remove my thyroid gland. It seems my instincts were right after all. Since having surgery (I now need daily thyroid hormone replacement) my symptoms have disappeared and I no longer need "the little purple pill" for acid reflux.

My only regret is not finding the right doctor sooner. I could have avoided many unnecessary tests and months of suffering.

Dr. Pikula's Advice: Sometimes you have to keep asking and pursuing answers until a situation makes sense.

Browse for related stories in the index at the very bottom of this page, or read a thyroid story.

Thanks to Donna Pikula, DDS, for the source, “After the Diagnosis: How to Look Out for Yourself or a Loved One.”

A fire-spotter to stop conflagrations in human lives: Chad Varah of the Samaritans

Edward Varah, founder of the Samaritans suicide prevention group, died this month near London, at age 95.

He grew up in England, the son of a minister in the Church of England. Just before he was ordained as a young man, he had presided over the funeral of a 13-year-old who killed herself because she mistook menstruation for a symptom of venereal disease.

This was a pivotal experience in his life, as his parish experience showed him that sexual problems drove many to contemplate suicide. He enlisted parishioners to help him field calls to prevent suicides. He started the Samaritans with a newspaper ad pleading for volunteers who would come to his historic London church and use "active listening therapy" to help the hundreds of people who contemplated suicide each day. After formalizing the Samaritans organization, he wrote a guidebook and became a spokesman for the group.

He said he once thought of the Samaritans as fire spotters who "keep watch for the conflagrations that break out in human lives."

Samaritans now operate in more than 40 countries, where it is also known as Befrienders Worldwide. Father Varah was widely recognized for having pioneered the phone help line for those threatening suicide, and he received honors from the American Association of Suicidology and Queen Elizabeth II.

Advice: Volunteer, and help stop the conflagrations in human lives.

Browse the index at the very bottom of this page for related stories, or read another suicide prevention story. Thanks to Adam Bernstein, who wrote the source story in the Nov. 15 issue of the Boston Globe.

She’s proud of her "battle wounds:" Isabel Maude and Chickenpox

Twelve-year-old Isabel Maude is proud of the scars that run from her stomach to her pelvis. She calls them her "battle wounds" and likes to tell her friends and teachers about the day she nearly died.

But for parents Jason and Charlotte, their daughter's scars serve as a haunting reminder of the day in which an apparently harmless childhood illness nearly took their little girl's life. Isabel's scars result not from an accident, but from chickenpox - which she contracted at age three.

Within days, the virus had taken hold of her body, leading to toxic shock syndrome - a rare type of blood poisoning caused by bacteria - and necrotising fasciitis, a bacterial infection that rapidly eats away at the flesh. Isabel suffered multiple organ failure and cardiac arrest, and spent three weeks in intensive care. She has since undergone seven plastic surgery operations on her abdomen and will need more.

Isabel's case is extreme, but she is not alone. Every year in the United Kingdom, chickenpox, a highly contagious virus, affects 300,000 children. There are no official figures on mortality in children, but it is thought the virus kills up to eight a year, leaving dozens of others with complications like Isabel's. These figures led scientists to suggest earlier this month that a chickenpox vaccine should be added to the MMR jab. They claimed the vaccine, which is already offered in America, Canada and Australia, is the "only realistic way of preventing deaths and complications from the virus".

Advice to parents: Get your kids vaccinated for chickenpox.

Browse for related stories in the index at the very bottom of this page, or read our earlier post on Isabel. Natasha Courtenay-Smith’s source article appears in today’s Daily Mail [UK].

He squandered his trust fund: Recovery oasis for heroin users

Whitney Tower, 56, a scion of the Whitney, Vanderbilt and Drexel fortunes, squandered his trust fund and sold family treasures to support a $1,000 a day heroin habit before landing in a tough-love facility near Delray Beach, Florida seven years ago and never leaving. "If I went back to New York I'd be dead in two weeks," he said.

Whitney favors linen suits and drops the names of the fast crowd he once ran with.

But now, after three decades in and out of treatment, his social life these days is dinner at home with sober friends who have settled in Delray Beach in what experts consider the recovery capital of America. He is studying addiction counseling, and he works as an unpaid intern at a local drug treatment center.

Advice: Consider working as a volunteer, like Whitney, to help others with your condition.

Read one of our thyroid story, or read more from the source article by Jane Gross in the Nov. 16 issue of the New York Times.

A roller-coaster ride of highs and lows: Self-care for diabetes

I have had diabetes for nearly 45 years. That makes me one of the long-term survivors. I have dual perspectives: one as a patient with diabetes, the other as a doctor caring for people with diabetes.

I have experienced diabetes as a child, adolescent and adult. I cared for my diabetes before the advent of blood sugar testers, when only urine testing was available. I managed my insulin by boiling my glass syringes to sterilize them before disposable syringes (and long before insulin pumps) revolutionized care for people with diabetes. When I began my medical practice, only a few medications were available; most were not as effective as those we have today.

Dr. Beers' Advice: You cannot ignore your disease for even a moment, or it will take you on a roller-coaster ride of highs and lows that will leave you exhausted and ill. Important factors are within your control. First is your weight. In close second place is your diet. And obviously exercise is a big part of the wellness picture, too. If you are willing to take control, there is very good news indeed: You can avoid the complications of diabetes and lead a healthy life.

Read a diabetes story of the rich and famous, or read the AARP guide source book, Living with Diabetes by Dr. Mark Beers.

She was the inspiration for "Hey Mama:" A death after cosmetic surgery

Donda West, mother of hip-hop mogul Kanye West, may have died because of complications from surgery, the Los Angeles County Coroner's office said Monday.

An autopsy may make clear the cause of death. West's publicist, Patricia Green, told CNN earlier Monday that West died after undergoing a cosmetic surgery procedure.

Publicist Jo-Ann Geffen said West contacted the surgeon again two weeks ago to say she was ready to go forward, but the surgeon said he needed a medical clearance before he would perform the surgery.

"I always insist on a medical clearance for women over 40, and in this instance it was particularly important because of a condition she had that I felt could have led to a heart attack," the surgeon said, according to Geffen's statement.

Geffen said she was scheduled to see an internist for the appropriate tests, but never made the appointment.

Donda West was a major influence on her son's life, as the music producer-singer-songwriter has often said -- including in lyrics to some of his songs. She regularly attended her son's concerts, and was at his performance at the MTV Video Music Awards in September.

Earlier this year, she released a book she co-authored called "Raising Kanye: Life Lessons From the Mother of a Hip-Hop Superstar." She retired from her post as professor and chair of the English Department at Chicago State University in 2004 to become her son's manager, according to the Kanye West Foundation Web site. Donda West was the inspiration for the song "Hey Mama."

Advice to those thinking of cosmetic surgery: Be sure to consult your regular doctor first.

Read a very different elective surgery story, or read CNN's source story by Karen Bonsignore, K.J. Matthews and Lola Ogunnaike.

Chasing nurses down the ward: Life after ostomy surgery

Jim Mielke lives a unique and varied life as an expert in international public health. Like most of us, he is also a patient. Here is the first of an occasional series of his stories:

I can still recall feeling like a new man almost immediately upon waking up with my ileostomy (a surgically created opening in the abdominal wall, with an external abdominal pouch to collect intestinal [fecal] output). Suddenly, I was free from years of pain and misery lasting from age 14 to 19. When I finally got my bag at age 19, I recall thinking, why did they wait so long? For the next three years, I was in and out of several different hospitals for 11 major ostomy-related surgeries, including total removal of the large intestine and rectum, while also struggling to withdraw from the addictive medications prescribed to me over the years. During these hospital stays, I was sometimes called upon to informally counsel those facing ostomy surgery or recovering from surgery. One of the common concerns of the men I counseled related to sex, and like any normal young male, I was pretty juiced up – chasing nurses down the ward with my red and white striped baggie flapping in the breeze. So I suppose the hospital staff felt that I could at least be a positive boost to these other guys.

Following the ostomy surgeries, life simply took off with my fully recovered and excellent health…

Advice to those with serious intestinal problems: Actively look into the options you have, and the quality of life you’ll likely have with each one.

Stay tuned for more of Jim’s stories. Read another of our stories about an intestinal problem.

Everyone thought I was crazy: Medical tourism for a liver transplant

Last year, Kevin Stewart learned he had cirrhosis of the liver, and that a liver transplant was his only option.

He owns a landscape maintenance business in Naples, Florida. Because of the high premiums for self-employed businessmen, he let his health insurance lapse.

Luckily, he had a potential donor – his sister – so he called hospitals to see how much a liver transplant would cost. "It was $30,000 for them to check me out – to see how worthy I was, how badly I needed a liver. And, if they decided I needed a liver transplant, I should pay them $300,000," he said – much more than he could afford.

To look to other countries for medical treatment, he contacted WorldMed Assist, a medical tourism web site. They researched his situation and identified two hospitals that could perform the liver transplant, both in India.

Kevin chose a New Delhi hospital and a surgeon who had already performed 120 liver transplants.

Four months after the transplant, Kevin is doing fine, recuperating in the Florida Keys, and looking forward to getting out on his boa and fishing. The total cost of his treatment and travel to India was less than $90,000 – one-fourth of what he would have paid in the U.S.

"Everyone I spoke to thought I was a crazy person. 'Why would you go there, you're going to get infected, it’s a dirty place….' Now I’m certainly happy to spread the word to people that you do have choices. You don’t have to lay down and die."

Advice to Americans in need of ruinously expensive surgery: Consider other alternatives too.

Read another story of a solution to costly care for a liver problem, or read Greg Allen's source story from All Things Considered on National Public Radio.

The greatest Christmas present ever: Empathetic active listening in diagnosis

Anne Dodge had lost count of all the doctors she had seen over the past
15 years. She guessed it was close to 30 of them.

Anne is in her thirties, with sandy brown hair and soft blue eyes. She grew up in a small town in Massachusetts, one of four sisters. No one had had an illness like hers. Around age 20, she found that food did not agree with her. . Anne lost her appetite and had to force herself to eat; then she'd feel sick and quietly retreat to the bathroom to regurgitate. Anne's health continued to deteriorate, and the past 12 months had been the most miserable of her life. There were also signs that her immune system was failing; she suffered a series of infections, including meningitis. She was hospitalized four times in 2004 in a mental health facility so she could try to gain weight under supervision.

By December, Anne's weight dropped to 82 pounds. Although she said she was forcing down close to 3,000 calories, her internist and her psychiatrist took the steady loss of weight as a sure sign that Anne was not telling the truth.

That day Anne was seeing Dr. Myron Falchuk, a gastroenterologist. He began to question, and listen, and observe, and then to think differently about Anne's case. And by doing so, he saved her life, because for 15 years a key aspect of her illness had been missed.

He had said, at the beginning, with a gentle smile, "let's go back to the beginning. Tell me about when you first didn’t feel good. I want to hear your story, in your own words. She told him the whole story. As she spoke, Dr. Falchuk would nod or interject short phrases: "Uhhuh," "I'm with you," "Go on."

Dr. Falchuk had begun their conversation with a general, open-ended question about when she first began to feel ill. "The goal of a physician is to get to the story, and to do so he has to understand the patient's emotions," Dr. Roter said. Dr. Falchuk immediately discerned emotions in Anne that would inhibit her from telling her tale. He tried to put her at ease by responding sympathetically to her history. He engaged her by indicating that he was listening actively, that he wanted to hear more. His simple interjections — "uh-huh, I'm with you, go on”"— implied to Anne Dodge that what she was saying was important to him.

A month later, she said he'd given her the greatest Christmas present ever – an accurate diagnosis. She had gained nearly 12 pounds. And she dared to think that maybe one day she would be, as she put it, "whole" again.

His questions, exam, and tests had revealed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests.

Advice to people with puzzling symptoms: Find a doctor who will hear your whole story.

Read another diagnostician’s active listening story, or read the source, Dr. Jerome Groopman's newest book, How Doctors Think.

They plan to address the problem with a new staff position: Access to care by a wounded Iraq veteran

Captain Brendan Fogerty, 32, of North Kingston, Rhode Island, has been the commanding officer of Weapons Company, a Marine reserve unit of New England's Own battalion. He is slow to anger, but now he is irate.

He had been visiting Marines from his company who suffered wounds. A particular concern was the treatment of Corporal Cody Hill, who suffered burns over 60% of his body as the sole survivor of a blast from an improvised explosive device (IED) that destroyed his Humvee on September 4 in Fallujah.

Cody was sent to the Broke Army Medical Center in Texas, one of the best in the armed forces. Though he saw a burn surgeon on October 5, 2006, no one had prescribed a long-term rehabilitation plan for him until May 4, a delay that jeopardized his recovery.

His father quit his job on an Oklahoma ranch to help his son heal. He dressed his son's burns and slept by his bedside. The family was struggling financially, but no one showed them that they were entitled to benefits - $29,000 in compensation and $100,000 in insurance. Paperwork went missing, and the claim was delayed for months.

A nurse on the East Burn Ward told Capt. Fogerty and Cody's family that Cody had slipped through the cracks.

Infuriated, Capt. Fogerty investigated, and then wrote a memo, addressing it up the chain of command, ultimately to a congressional committee. The memo described the lost paperwork, the failure to inform the military family what benefits they were entitled to, and the inability of the Department of Defense and Veterans Affairs Administration to work together.

A spokesman for Brooke Army Medical Center concedes failures to coordinate care, and said the center plans to address the problem with a new staff position.

Hello? They plan to? When? With one staff position, they'll solve these widespread problems? Is anyone in charge? No? Whose responsibility is that?

Advice: Ask the next veteran you see if he's getting all the medical care and support he needs. And get them a patient advocate like Capt. Fogerty.

Read another Iraq veteran story, or read Charles Sennott’s source story in yesterday's Boston Globe.

Don’t be a pussy: Traumatic brain injury in an Iraq veteran

Lance Corporal Michael Stubbs of Medford, Massachusetts, 24, had been wounded in Fallujah and was back at Fort Devens on "medical hold" status – still on active duty, awaiting treatment.

A turret gunner, Michael had survived three blasts from improvised explosive devices (IEDs). One blast on May 25 had given him a concussion. He walked away from it, and tried to shrug it off. For weeks he toughed it out, though his fellow Marines urged him to seek medical treatment. Finally, he went to a doctor, who recommended he be sent home for a medical evaluation. His commanding officer disagreed.

"Don't be a pussy; you’re fine," he said.

But the dizzy spells made it impossible for Michael to keep up during patrols. The Marines in his platoon begged the medical staff to take another look, saying they feared for his health and their safety as a unit. On August 6, he was declared unfit for duty and was sent to the Naval Medical Center in Bethesda, Maryland.

His medical records show his diagnosis of a concussion and his injuries to his back and knees. Two days later he was shipped to Fort Devens and told there would be follow-up medical appointments.

But "no one was there to help me," he said. "There were no follow-up appointments. I was told my records were lost."

To this day, he has never been screened for Traumatic Brain Injury, caused when the brain is shaken by a blast wave. But he suffers the symptoms – disorientation, depression and anger – which can take months to surface. He was having nightmares and suffering from sleeplessness – and drinking as a way to self-medicate. But the command saw no physical injury and ordered him to perform work details, including painting the headquarters' hallway.

That's what he was doing on September 4, when he heard the squeaking of a pen on a white board at HQ. He watched as an officer wrote the names of the men in his unit who had just been killed in action: Shoemacher, Valdepenas, Walsh.

Advice: Spread the stories of veterans to help them get the medical care they deserve.

Read another vet’s story, or read more from the source article by Charles Sennott in today’s Boston Globe.

Each widow will get $72,000: Merck's settlement for Vioxx adverse drug reactions

Merck will pay almost $5 billion in a settlement with the 27,000 plaintiffs. Each plaintiff who took Vioxx for a month or more, and had a heart attack or stroke within two weeks of taking Vioxx, will get an average of $120,000. When attorney's fees are subtracted, each plaintiff will wind up with an average of only $72,000.

Yale Law School Professor Peter Shuck says Merck "played hardball, and the settlement reflects that. The predicted liabilities for them were much, much higher."

Dr. Eric Topol agrees: "They've gotten off quite easily for the problems they've engendered," said the co-author of an important medical journal article warning of the risks of Vioxx.

Advice for users of Vioxx: Ask a lawyer for advice. You don’t necessarily need to accept the settlement, but note that most people who sued Merck individually have lost.

Read the story of a successful Vioxx plaintiff, or read more from the source article by Alex Berenson in today’s New York Times.

The nurse refused to discuss it: HIPAA and a patient’s privacy

Nurse I.Y. in Iowa wrote to an Ann Landers nurse advisory line:

Question: Recently, I cared for an 86-year-old woman admitted to my unit after a massive stroke. She was unresponsive and not expected to survive. That afternoon, her adult daughter, who lives in another state, called the nurses' station to ask about her mother’s condition. The nurse who answered the phone refused to discuss it with her, explaining that when the patient can't give consent, nurses are prohibited from disclosing any information under the federal Health Insurance Portability and Accountability Act (HIPAA) privacy rule.

Not realizing how ill her mother was, the daughter delayed arranging her visit until the next day. When she arrived, her mother was dead.

This doesn't seem right to me. Does HIPAA really prohibit us from disclosing patient information to family members when the patient can't give consent?

Answer by the nursing Advice Editor:
No, but misunderstandings like this are common. Fearful of lawsuits or fines, many health care professionals apply the privacy rule inappropriately, withholding needed health care information from other caregivers, family members, and even patients themselves.

In fact, the HIPAA privacy rule gives health care professionals a great deal of latitude to exercise their professional judgment and common sense. On its web site, the US Dept. of Health and Human Services (HHS) addresses situations like the one you describe. When the patient is incapacitated and unable to give consent, a health care professional may share information about her care "when, in exercising professional judgment, [he] determines that doing so would be in the best interest of the patient."

Advice to family members needing to know about a loved one's condition: See the HIPAA web site to learn what the law really says.

Read another patient privacy story, or read more from the Nursing2007 magazine's source column in the October issue.

You are how sober you are today: Caduceus A.A. groups for impaired physicians

A physician in the "Caduceus" group of doctors in A.A. described how each self-inflated newcomer gradually changed: "All the new doctors who come into Caduceus seem to be under tremendous compulsion to recite their curriculum vitae: their medical schools, their hospital affiliation. They try to make it clear to everyone else that they have great medical knowledge. They make references to some medical issue. In some way, without anybody saying anything, this kind of behavior gradually tapers off. The newcomers begin to realize that instead of 'I am what I do,' the group's silent message is, 'You are how sober you are today – and the rest of it doesn’t matter.'"

Advice to doctors with alcohol or drug problems: Go to Alcoholics Anonymous.

Read another impaired physician story, or read Inside Alcoholics Anonymous, the source book, by Nan Robertson.

With an impressive air of authority: The nocebo effect

Everyone has heard the expression "scared to death." But can the mind actually influence life and death — or at least our well-being? Medical science is asking the same question.

In 1974, a Nashville physician treated Sam Londe for cancer of the esophagus, which was then considered fatal. Sam died a few weeks later, though an autopsy revealed that his esophagus was fine. He had a few cancerous spots on his liver and one on his lung, but not enough to kill him.

Three decades later his doctor told the Discovery Health Channel: "He died with cancer, but not from cancer. ... I thought he had cancer. He thought he had cancer. Everybody around him thought he had cancer. Did I remove hope in some way?"

Sam could have fallen victim to the "nocebo" phenomenon. With a placebo, a harmless substance is given to patients in medical studies to test the efficacy of a drug. Patients normally expect a positive outcome. But with the nocebo effect, people expect something bad to occur, developing symptoms after learning about painful side effects of medication.

"People get worse because they believe they'll get worse," says Dr. Julio Licinio, chairman of the Department of Psychiatry and Behavioral Sciences at the University of Miami. "It's almost like a negative self-fulfilling prophecy." (Nocebo is Latin for "I will harm.")

An example: Women who were studied in the landmark Framingham Heart Study who believed they were prone to heart disease were nearly four times as likely to die as women with similar risk factors — high blood pressure, excessive weight, high cholesterol — who didn't believe.

When you expect bad things to happen, Dr. Licinio says, stress hormones rise, your heart beats faster and your immune system becomes suppressed. "It's similar to the feeling you'd get if you saw a car rushing toward you. It's good in an acute situation when you need to run away. It's not good when you're having surgery."

Neither is it good, apparently, when a priest administers last rites. In the 1997 report, "Nocebo: The Power of Suggestibility," Dr. Herbert Spiegel of Columbia University writes about a case in which a priest was summoned to administer last rites at a large American Roman Catholic hospital. "With an impressive air of authority and a brusque voice," Spiegel said, the priest gave last rites to the wrong patient. Within 15 minutes, that patient died, but the other one lived a few more days.

Advice to patients: Share this story with any downbeat family members.

Read a story about the power of hope, or read Desonta Holder's source story in the McClatchy Newspapers.

Economy class syndrome: Deep vein thrombosis among airline passengers

Michael Rieff, a 53-year-old American executive with Royal Dutch Shell, took long flights almost half the time when he traveled. Several years ago, he was hospitalized with life-threatening blood clots in his lungs (from "deep vein thrombosis," or DVT) after a flight from Houston to Amsterdam. Now he has cut his flying in half, and walks up and down the aisles on long flights to restore his circulation.

Though it is often called "economy class syndrome" because of the cramped conditions there, DVT also occurs among business class and first class passengers. Indeed, Michael, Shell's head of global compensation and benefits, always flew in business class or first class.

DVT occurs when a blood clot forms within the large deep veins of the body, usually in the legs. If not treated, part of the clot can break off and travel to the lungs, where it can block blood flow (in a "pulmonary embolism"). DVT often causes unexplained pain, tenderness, redness and swelling, often in the leg. Once a clot reaches the lungs, chest pain and breathing difficulties are common.

DVT can be hard to diagnose, because other conditions have similar symptoms. Randy Fenninger, the president of the nonprofit National Alliance for Thrombosis and Thrombophilia, entered a hospital E.R. with chest pain, but was not properly diagnosed for seven hours.

Randy's organization increases public awareness of the condition, and ways to prevent it. Bravo for helping others with your condition!

Advice to travelers: Walk, or find ways to exercise, during long airplane flights.

Read a sadder DVT story, or read Tanya Mohn's source story in today's New York Times.

I warmly asked the orange about his allergies: An accidental needle-stick

Medical student Ishani Ganguli tells this recent story:

I committed the ultimate medical faux pas last night -- sticking myself with a used syringe. I have yet to find out what the full extent of the precautionary repercussions will be, since I'm still waiting for the doctor on-call for blood-borne disease exposures to, ahem, call me back. But the situation doesn't seem too dire -- and on the bright side, I've achieved blood-sister status with one of my housemates.
Early in the evening, I decided to check out a training workshop on administering flu shots so I could help dole them out to the Boston community. This represented the first time we'd actually get to puncture a patient -- until now, we'd done talking and testing, but no treating. So, on entering the classroom, I was relieved to see a cluster of citrus fruits next to the vials and disposable needles on the table. Apparently our first bumbling efforts would be endured by inanimate objects.
After a quick primer on the mechanics of the task, we lined up to practice shooting water into our silent charges. I put on my best doctor voice, warmly asking my orange if "he" had ever been allergic to eggs and explaining to him that I was about to wipe his skin with alcohol and that he would feel a slight pinch when I inserted the needle. "Mr. Orange" received the dose with little complaint, and my only regret is that I could not offer him one of the Looney Tunes Band-Aids that motivated my strange affection for vaccine shots when I was a child.

And then it was time for The Real Thing. I modified my doctor speech slightly to address my housemate, then stuck the syringe into the vial of flu vaccine. I overcame the strangeness of piercing the flesh of a living person, and a friend no less, and plunged right in like a pro. But as I pulled out the needle and started to put on the safety cap, the needle slid abruptly into the tip of my gloved left middle finger, and it was immediately clear that this was A Bad Thing.

The nurse leading the workshop told me to wash out the tiny hole in my finger that issued small beads of blood, and to squeeze out as much of this blood as I could. She went over the risks of blood-borne pathogens, including HIV, and while I trust that my housemate is bug-free, I am to go through the usual protective steps, which in a clinical setting are probably more critical.

I paged the doctor to report my exposure like a good Clumsy-Med-Student, and following the brief flurry of activity, I let my roommate practice a shot on me. No mishaps that time around, and at least I won't get the flu! More shortly on What to Do When You Stick a Used Needle Into Your Finger.


Advice to hospital patients being treated by young medical staff: You can ask the medical student or intern how much experience they have before they perform a procedure on you, and ask for a more experienced colleague, if you like.


Read the sequel at Ms. Ganguli’s blog, Short White Coat.

You don't have any questions for the pharmacist, do you?: A fatal methadone overdose

Terry Paul Smith, a 46-year-old roofer, suffered from a disorder of the peripheral nerves (neuropathy) in his back and legs, which kept him in chronic pain. He took Oxycontin and Neurontin, but he disliked the way it made him feel, e.g., making him sometimes "drop out" in the middle of a conversation. After he mentioned the pain meds' side effects, his doctor changed the prescription to methadone, a narcotic pain reliever. The doctor wrote a prescription for Terry to take four 10-milligram pills, twice a day.

Terry filled the prescription at a local Walgreen's pharmacy in Jacksonville, Florida. In handing over the pills, the pharmacy employee asked, "You don’t have any questions for the pharmacist, do you?" They didn’t.

Though Terry didn’t know it, the label on the medication vial was incorrect; it directed him to take four tablets "as needed for chronic pain," and did not mention any limits on the frequency. Terry took the pills for the first time on July 23-24, 2001.

Within 36 hours, he was dead. An autopsy that his widow insisted found toxic levels of methadone in his blood.

The pharmacist had mislabeled the pills as "take as needed" rather than take "twice a day."

Now Terry's widow, Pearl Smith, is pursuing a lawsuit against Walgreen's. Next week, the jury will begin considering the case.

A company spokesman says Walgreen's has spent $1 billion over the last decade on pharmacy safety systems, safety training and technology. Walgreen's filled more than half a billion prescriptions in the last fiscal year.

Advice: Read the doctor's prescription and check it carefully against the label, especially for a new medicine.

Read an informed consent story, or read more from the source article by Kevin McCoy in the USA Today of Nov. 2.

Milkshake misdeed?: The ethics of tube feeding

Here's the thinking of Randy Cohen, the NY Times' ethicist, in response to a reader's question:

Question: My 71-year-old father lives in a nursing home, is confined to a wheelchair and is tube-fed. He understands the health risks of his taking food or liquid by mouth. (He got pneumonia this way.) When he was first admitted and asked me to bring him a milkshake, I refused. Now that I see he will eat whatever he wants, I’m inclined to give it to him. Am I more compassionate or less ethical?

Answer: You are more understanding. You always sought to help your father – compassionately, ethically. Experience has taught you different ways to do so. Milkshake or unshakable refusal? Either is permitted.

You might decide that refusing to bring your father something sweet and frosty is simply priggish. He is an adult, he is lucid, his risky conduct imperils only himself. You may make the case for prudence, but he gets to make the decision. And when he does, there's no dishonor in your acting as his agent and physically carrying out his wishes. By doing so, you honor his right to be an autonomous person.

In this, you have a luxury the nursing home does not. It must strive to preserve his life. You may be guided by a child's love for a father, helping him to have not the longest life but the most satisfying.

That said, your feelings, too, count for something. You might with equal integrity decline to abet his self-destructive actions – not out of a determination to extend his life but because you would feel horrible if you fetched the liquid instrument of his death. You are not required to bear the burden of guilt and shame that would come from handing your own father that fatal straw. You may honorably demur not only for this health but also for your tranquility.

Read another story about a patient’s choice of quality of life vis a vis medical care.

My annual physical was a lifesaver

David Evett's letter to the editor:

Stephen Smith's article: "The annual physical gets a checkup" (Health/Science, Oct. 22) questions the value of the yearly visit to the doctor. I am an active, energetic 71-year-old. Between Christmas and New Year’s 2005-2006, I had a mild case of pneumonia, which yielded promptly to antibiotics. When I went in for my annual checkup the following April, I seemed to be in excellent general health. My conscientious doctor, however, ordered a chest X-ray to see whether the pulmonary infection had done any permanent damage. This was not an official follow-up: had I not come in for the exam, he would not have ordered the X-ray. It revealed no ill effects from the pneumonia. The alert radiologist, however, noticed a suspicious shadow in the other lung. It was cancer. Early detection meant early surgery and the strong likelihood that it would not recur. I need hardly say that I am glad – as are my family, friends, and professional associates – that I schedule that exam every spring.

Advice to elderly pneumonia survivors: Pneumonia can be dangerous for older people, so make sure the doctor follows up to ensure the infection has completely cleared up.

Read another prevention story.

We did this to change thousands: A breast cancer survivor

During her treatment for breast cancer, Kim Carlos, 36, ate lunch once a week at the Nordstrom department store in Kansas City, Missouri, with three other young women with breast cancer. They wrote a book based on their discussions, "Nordie's at Noon," and published it themselves. Their grass-roots marketing was so successful that Da Capo Press bought the book and is redistributing it.

Kim's work brought her so many requests for speaking and advocacy work that she decided to leave her position at a law firm in Kansas City to dedicate herself to motivational speaking and issues-oriented public relations.

"We didn’t go through this to change one life, we did this to change thousands," she said.

Advice: Share your survival stories, your pain and your joy, with your support group of friends, like Kim.

Read another breast cancer survivor story, or read the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

It's atrocioius that doctors do not carry enough liability insurance: A surgical error lawsuit

Here’s the comment by a reader who was the subject of my recent blog post:

I am the person mentioned in the article which Dr. Paul Cho disabled while addicted to narcotic prescriptions which he was writing for himself. I think it is atrocious that these doctors do not carry enough liability insurance. Not to mention that the Texas Medical Board did not pull his license; barely reprimanding the doctor at all. Who is out there to protect the patient from these doctors? Something needs to be done. Dr. Cho simply moved out of El Paso to open another practice in Fort Worth. Why, so he can disable more people? These doctors need to start taking responsibility for their actions and the Texas Medical Board needs to start doing what they are supposed to be there to do...PROTECT THE COMMUNITY.

Thank you,
Demian M. McElhinny

Advice: Tell your story to warn others.


Read the original blog post, or read more from the source article in the Oct. 5 issue of the New York Times.

I was telling everyone to "feel their boobies": a breast cancer survivor

Leigh Hurst, 37, said she never intended to start a business when her cancer was diagnosed in 2004. She just wanted to spread the word among her friends and other young women that they needed to be serious about breast self-examination. "Basically, I was telling everyone I met to 'feel their boobies,' and when I walked with a group of friends in the Avon breast cancer walk in New York, I set up a one-page web site, put 'Feel your Boobies' on our T-shirts and printed an extra hundred to sell," she said. She sold all the T-shirts within minutes, and donated the proceeds to Komen for the Cure.

Her group was filmed by the Today TV show, and when she returned home to Harrisburg, Pennsylvania, she started filling orders that were coming in through the web site.

After much thought, she decided her company should be a nonprofit, to raise awareness and encourage breast self-exams. She put her parents to work in her house, filling orders and handling customer service, and quit her job.

Advice: Find a way to raise others' awareness to prevent them from getting your disease, and help them detect it early, like Leigh.

Read another breast cancer survivor story, or read more from the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

She might have been upset by the mistake: A wrong patient error

At a hospital in Somerville, Masschusetts, two patients with the same first name were waiting in separate exam rooms in the gynecological clinic one day in November 2005. One needed a colposcopy – an examination of the vagina and cervix with a magnifying device and a biopsy. The other woman needed a routine, less-invasive checkup. A medical assistant accidentally switched the women's charts while hanging them outside each door.

One woman mistakenly received a colposcopy, but neither she nor her interpreter objected, according to the chief of surgery.

The chief of surgery said the woman had not suffered physical harm, though he acknowledged that she might have been upset by the mistake. A friend of mine who has, unlike the surgeon, experienced the pain and discomfort of a colposcopy, might argue with him….

Presumably this is less likely to happen now at that hospital, since staff now take time-outs before office procedures to verify patients' names and the purpose of the procedure.

Advice to people about to undergo a medical procedure: Make sure the doctor knows your full name.

Read another wrong patient story, or read more from the source article by Liz Kowalczyk in the Oct. 26 issue of the Boston Globe.