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.

She was well enough to start making plans again: A cancer survivor and entrepreneur

Ms. Banu Ozden is a computer scientist whose cancer was diagnosed in 2001. She said from the time she started dealing with the disease, she wanted to design a system that would make it easier for patients to keep track of their medical costs and also help them find errors in billing and reimbursement records.

In 2005, when teaching computer science at the University of Southern California, she was told that she again had cancer and that this time the disease had spread.

She took a leave of absence from her job and moved to New York so she could be treated at Memorial Sloan-Kettering Cancer Center. Within a month of her diagnosis, she was feeling well enough to start making plans again.

Once again in the morass of medical bills, she knew she wanted to proceed with her company. She started Smart Medical Consumer with her own funds and investments from friends and family.

Advice: See if you can help those struggling with a disease you have learned how to face, as Banu is doing.

Read one of our cancer survivor entrepreneur stories, or read more from the NY Times article on October 25 by Marci Alboher.

Concussion is the white elephant in the room: Safer football helmets

Years ago, as a quarterback wearing the uniform and helmet of the Harvard University football team, Vin Ferrara sustained several concussions. Now his photo appears in the newspaper, helmet in hand, again, in a very different way.

Vin has developed a radically different football helmet through his company, Xenith LLC. Instead of using foam inside the helmet to cushion impacts, this helmet uses shock absorbers filled with air. The helmet seems better at preventing concussions than are the standard foam-filled helmets. Mike Oliver, the head of the helmet certification agency, said, "Concussion is the white elephant in the room right now when it comes to helmets, and I'm cautiously optimistic about how low these numbers [from the impact tests] are."

This is important because high school athletic programs usually use reconditioned old helmets with degraded foam padding. While these helmets continue to prevent skull fractures, they fail to prevent many concussions. Studies find that 10% to 50% of high school players each season sustain concussions, whose effects range from persistent memory problems and depression to coma and death.

For example, Max Conradt, a high school player in Yachats, Oregon, was wearing a 20-year-old helmet when he sustained hits that left him comatose for two months and left him permanently impaired.

Hopefully the new helmet will keep football players safe.

Vin Ferrara had concussions, and from that experience, he developed a product to prevent others from getting the injuries he did. He joins other entrepreneur patient advocates in businesses aimed at preventing or reducing the harm of multiple sclerosis, Lou Gehrig’s disease, and other conditions, as described on this blog. Now that’s worth cheering for!

Advice: Consider if there are ways you can help others beat your disease.

Read one of our football concussion stories, or read more from the source article by Alan Schwarz in today’s New York Times.

He lost a $25,000 bet: Chewing tobacco addiction

Red Sox Manager Terry Francona was seen in last night's World Series baseball game spitting five times and what clearly looked like brown tobacco juice emerged three times. He knows he has a problem: he lost a $25,000 bet that he could kick his habit by the end of the season. Francona appeared to switch to gum last night.

Watching Francona's toxic brown spit should spur Major League Baseball into a vigorous campaign against chewing tobacco. Joe Garagiola, who has spoken to major leaguers and amateur players about the risks of chewing tobacco, said yesterday that Francona's parents had asked him to talk to their son about his addiction. Garagiola said his message is that chewing tobacco is addictive, causes oral cancer and can cost you your life. "If I were to talk to Terry, I'd tell him to think seriously after the World Series about getting help," he said. "I know a good place, like the Mayo Clinic in Rochester, Minnesota."

Advice to nervous members of Red Sox Nation: Chew sugarless gum for the tension, and warn your tobacco-chewing friends about the dangers.

Read another of our baseball stories, or read Richard Sandomir’s source story in today’s New York Times.

It’s just middle-aged white guys making them, not the customer: Compression sleeves for lymphedema

Rachel Troxell, 37, learned she had breast cancer three years ago. After going through surgery, chemotherapy and radiation, she said the hardest part was learning that she had lymphedema, a condition that affects a sizable number of breast cancer survivors and cause their limbs to swell with fluid. "With the cancer, there was a clear path to follow, and I knew there was an end to it," she said. "With lymphedema, you are stuck with it, and it affects the quality of your life."

Her treatment for lymphedema required her to wear a compression sleeve constantly, leading to questions from everyone she encountered. Rachel, a videographer and graphic designer, said she became consumed with finding an alternative to the drab, unsightly and uncomfortable sleeve.

"I called some companies that made the ugly garment, asking if there were other options, and they all said no," she said. "It is just middle-aged white guys making them, and they aren’t the customer."

She connected with Kristin Dudley, who was then a 22-year=old fashion student at Drexel University in Philadelphia. They designed a more fashionable and comfortable compression sleeve. Kristin was excited about it because her own grandmother, who had lymphedema, had refused to wear her own compression sleeves.

Rachel and Kristin won third place for the idea in a business plan contest sponsored by Drexel University. They are now partners in Lymphedivas, since starting the company last year.

Their business owes its inspiration to the brush with breast cancer.

Survival rates have increased markedly, so there are now 2.3 million breast cancer survivors in the U.S., according to the Susan G. Komen for the Cure, one of the largest breast cancer research and advocacy organizations. Many survivors are committed to doing something to ease the ordeal of others or to solve a particular problem they encountered in their own treatment.

Advice to those with a serious health condition: Perhaps, like Rachel, you can find innovative ways to help others who suffer from the same health condition you do.

Read another of our entrepreneur stories, or read Marci Alboher's source story in today’s New York Times.

It is an intensely personal thing with me: Sen. Thompson's daughter & Terri Schiavo

In a news conference on Monday, former Senator Fred Thompson answered a question about the Terri Schiavo case:

"I had to face a situation like that in my own personal life with my own daughter [Elizabeth Panici]. I am a little bit uncomfortable about that because it is an intensely personal thing with me. These things should be decided by the family. The federal government and the state government too, except for the court system, ought to stay out of those matters.

"I was at that bedside. And I had to make those decisions with the rest of my family. No matter which decision you make, you will never know whether or not you made exactly the right decision."


Elizabeth had suffered from bipolar disorder and died in 2002 from an accidental drug overdose. Toxicology tests of her blood showed six times the lethal level of hydrocodone, a painkiller. She arrived unconscious at a Tennessee hospital, where staff revived her, and apparently placed her on life support. Mr. Thompson did not say who ultimately made the decision to withdraw her from life support. She never regained consciousness, and six days later, she was pronounced dead.

Advice to family members with a gravely ill relative: Consider hospice care as an alternative to life support in a hospital.

Read a peaceful end of life story, or read Marc Santora’s source story in today’s New York Times.

Her bravest act: Betty Ford’s recovery from addiction

From Nan Robertson:

Rancho Mirage, California
I sat with Betty Ford, the wife of the 38th President of the United States, a recovering pill addict and alcoholic, in the soothing beige and pink interior of the intensive rehabilitation center named after her. She is a vital part of that center, informing and inspiring patients by her own example of steadfastness and honesty. "I was in a little euphoria of my own once," she said, "functioning but less than aware."

Just before her 60th birthday, in April 1978, her children and her husband, Gerald Ford, only 14 months out of the White House, confronted her. With them was Dr. Joseph Pursch, then head of the Long Beach Naval Hospital's Alcohol and Drug Rehabilitation Service. He had carefully rehearsed the family, all its members armed with written lists detailing specific instances of Mrs. Ford's drugged, drunk behavior as each had experienced it.

The President recalled times she had fallen asleep in a chair, her blurry speech, her memory lapses. Her son Mike and his wife told her why they hadn't wanted to have a child—because they didn’t want it to have a grandmother who was not there for the baby. Another son, Steve, remembered bringing a new girlfriend home and cooking dinner for his mother while Mrs. Ford slipped into a haze in front of the TV with one drink, two drinks, three. "You hurt me," Steve said.

Mrs. Ford collapsed in a storm of weeping and shock. But, she said, she had enough sense left to realize her family was doing this because they loved her and wanted to help. She entered the Long Beach hospital for treatment and issued a statement to a stunned nation. She confessed to “overmedicating” herself: "It's an insidious thing, and I mean to rid myself of the damaging effects." But she resisted any suggestion that liquor was also a major problem. Dr. Pursch ordered her to read the basic text that Bill Wilson had written for A.A, known informally as the Big Book. Just substitute "chemically dependent" for the word "alcoholic," he told her. Mrs. Ford comforted herself with the thought that she never needed to take a drink in the morning to stop the shakes. She found people who knocked back Bloody Marys well before lunch "pathetic." She could admit to the pills, prescribed for arthritis, a pinched nerve, muscle spasms in her neck. After all, the doctors had done it to her. She could not face the alcoholism—because that meant she had done it to herself.

Finally, after further treatment at Long Beach, with her husband's assurance that it would not embarrass him, she issued another statement: "I have found that I am not only addicted to the medications I have been taking for my arthritis but also to alcohol. I expect this treatment and fellowship to be a solution for my problem, and I embrace it not only for me but for all the others who are here to participate." I said to Mrs. Ford that it was hard enough for ordinary people to confess they are drunks and then set about to rebuild their lives. "I think it was my bravest act," I told her. "What it must have been like for a President’s wife!?"

She replied, "Granted, I had the advantage of being the wife of a former President, which put me, in the eyes of others, in a special place. But I never could have found recovery if I thought myself to be in a special place. I am just a recovering woman."

Advice to problem drinkers: Share your story with others to help them heal, like Betty Ford has done.

Read another famous person’s recovery story, or read the source, "Getting Better: Inside Alcoholics Anonymous" by Nan Robertson.

I’m in remarkably good shape: A Parkinson’s patient advocate

Parkinson's disease hasn't robbed A.C. Cowan of his ability to enjoy life or fight for causes he's passionate about.

The 82-year-old spoke at a symposium this week to raise awareness about Parkinson's disease at LSU Health Sciences Center-Shreveport's. He spoke to an audience of patients, their families and caregivers, allied health and medical professionals and students

"For my age and the disease, I'm in remarkably in good shape," having lived with Parkinson’s for ten years, he said. "There's nothing I can't do for myself. I drive, eat well and I enjoy my life."

"Now in retirement, I have time to work with the Parkinson's group as an advocate. I've been to Washington, D.C., three times to try and pry money out of Congress" for Parkinson's disease research.

Advice to Parkinson's patients: Live like A.C. Cowan.

Read one of our Parkinson’s stories, or read more from the source article by Mary Jimenez.

Your disease is not your fault: Oprah on Thyroid Disease

From Mary Shomon:

If you already have a diagnosed thyroid condition -- and you also heard Dr. Christiane Northrup say recently on Oprah's TV show that "your symptoms are actually your soul's way of bringing deeper issues to your attention," then I'm here, as a thyroid patient advocate, to tell you that your thyroid disease is NOT your fault, despite what Dr. Northrup says.

Here's what else Dr. Northrup has to say about thyroid disease:
"In many women thyroid dysfunction develops because of an energy blockage in the throat region, the result of a lifetime of 'swallowing' words one is aching to say. In the name of preserving harmony, or because these women have learned to live as relatively helpless members of their families or social groups, they have learned to stifle their self-expression....It's no coincidence that so many more women than men have thyroid problems. Thyroid disease is related to expressing your feelings..."

Thousands of women, for example, developed thyroid problems because they lived downwind of the Chernobyl nuclear plant after its accidental release of radiation. Were those women stifling their self-expression? What about women exposed to thyroid-damaging perchlorate by drinking contaminated water here in the U.S. Are they swallowing their words, or swallowing contaminated water? Many women develop thyroid conditions after having a baby. Are those new mothers unable to express themselves, or are their out-of-whack post-partum hormones expressing themselves? What about women with thyroid cancer? Will exercise, nutrition and sex fix their thyroid problem?

Thyroid disease results when heredity and genetics, autoimmunity, environmental exposures, viral infections, and hormonal shifts come together in a perfect storm to trigger a dysfunction. And while emotional and physical stress, as well as nutrition and lifestyle, can play a role creating a climate receptive for -- or fighting against -- most diseases including thyroid conditions, these factors are only part of a larger, complicated puzzle.

Oprah is the richest and most powerful woman in television, one of the richest women in the world, and has a humanitarian and media platform that reaches billions. She is, to many, the ultimate example of an empowered woman. And Dr. Northrup is a best-selling author and "celebrity" doctor on television. What do you think? Did Oprah and Dr. Northrup each develop thyroid disease because they have spent "a lifetime of swallowing words" and stifling "self-expression?"

Explaining the symptoms of a thyroid condition, what women can do to reduce their risk of developing thyroid problems, explaining how women can get tested, giving them the confidence and courage to insist on testing even if their doctor, HMO or insurance says no, and then explaining how to interpret the confusing results -- THAT would be doing what America's women really need.

Mary Shomon's advice: Take the advice you get from doctors on television talk shows with a big grain of iodized salt...

Read blogger Mary Shomon’s source blog post.

There was nothing wrong with me: Unnecessary triple bypass surgery

Ron Spurgeon's health began to unravel when he hurt his shoulder doing yard work. He eventually wound up at a hospital in northern California, where a cardiologist told him he had a life-threatening heart condition. Four days later, he had triple bypass surgery.

Restrictions on heavy lifting as a consequence of the incision in his breastbone led the robust 56-year-old to give up his job maintaining machinery at lumber mills.

In 2003, two years after his operation, Ron learned that Tenet Healthcare, the hospital's owner, had paid $54 million to settle U.S. government allegations that it billed Medicare for unnecessary heart procedures. The next year, Ron and 344 others sued the hospital and eight cardiologists and surgeons for performing unnecessary procedures. The defendants ultimately paid $442 million to settle the suit, and Tenet says safeguards are now in place. Outside experts who reviewed patient charts determined that Ron was among the many patients who hadn't needed their procedures.

"There was nothing wrong with me," he says. "Those guys violated me. They took away my trust in doctors."

Advice: Ask your doctor beforehand what the medical research says is the likely result of your surgery.


Read another unnecessary surgery story, or read Consumer Reports' source story.

Thanks, Helen Haskell.

Theoretically a totally preventable disease: MRSA infections

A high school student in Bedford, Virginia who was hospitalized for more than a week with an antibiotic-resistant staph infection, has died. After a student protest, officials shut down 21 schools for cleaning to keep the illness from spreading. Ashton Bonds, 17, a senior at Staunton River High School, died Monday after being diagnosed with Methicillin-resistant Staphylococcus aureus, or MRSA, his mother said.

"I want people to know how sick it made my son," Veronica Bonds said.

MRSA is a strain of staph bacteria that does not respond to penicillin and related antibiotics but can be treated with other drugs. The infection can be spread by skin-to-skin contact or sharing an item used by an infected person, particularly one with an open wound.

Ashton went to the hospital on Oct. 4 after complaining of pain in his side, his mother said. He was sent home after doctors ruled out appendicitis, but was readmitted three days later and taken to another hospital. Last week doctors diagnosed him with a MRSA infection that had quickly spread to his kidneys, liver, lungs and the muscles around his heart. Early Thursday morning, Ashton had to be sedated and put on a ventilator. He was about to undergo surgery to drain the infection from his lungs when doctors detected a blood clot near his heart. But the clot was inoperable.

Ashton is one of 19,000 people who die each year from infections by drug-resistant bacteria. The vast majority – about 85% - of invasive MRSA infections are associated with healthcare treatment, e.g., in a hospital or nursing home, according to a study published today in the Journal of the American Medical Association.

Some hospital systems, e.g., Evanston Northwestern Healthcare, have dramatically reduced their rate of MRSA infections. Dr. Lance Peterson, an epidemiologist at ENH, said, "MRSA is theoretically a totally preventable disease."

Advice to hospitalized patients: Put up a sign near your bed asking your doctors and nurses to wash their hands.

Read another drug-resistant infection story, or read more from today’s Associated Press stories, or the New York Times article by Kevin Sack.

So many things my doctor and Medtronic didn’t tell me: A defibrillator wire defect

Stephanie Martinson, 35, a speech pathologist in Palo Alto, California, said that in March she had a defective wire – a Fidelis lead - removed from the defibrillator device in her heart. The removal was necessary because instead of correctly monitoring her heart rhythm, and only shocking it back into a normal pattern when needed, the Medtronic device had delivered a jolting shock 26 times in an hour. Medtronic notified doctors of the defect, and in May, she received a replacement wire. Unfortunately, the replacement was another Fidelis lead, which may be defective.

"There are so many things my doctors and Medtronic didn't tell me," she said.

Five patients are known to have died because of malfunctions of the device's leads, or wires, which connect the device to the heart.

Medtronic disclosed that the new thin leads have a tendency to form small cracks in the wire, which either blocks or distorts its electrical flow. The flaws may result in faulty signals to the defibrillator, making it unnecessarily shock the heart or fail to deliver a life-saving jolt of electricity when needed.

No one knows how common this problem is. Medtronic says it might affect 2.3% of the 235,000 patients who have the suspect wires, i.e., more than 5,000 patients.

Advice: Tell your friends with implanted defibrillators to ask their doctors whether they have the Medtronic-made Fidelis leads (which have identifying numbers 6930, 6931, 6948 and 6949, on their wallet card), and if so, to schedule computerized testing of the device.

Read another defibrillator story, or read the source stories by Barry Meier and Lawrence Altman in today's New York Times.

Years of nagging are paying off: Progress in the war on cancer

The death rates from cancer are falling faster, according to today's Annual Report to the Nation by the American Cancer Society, National Cancer Institute and others. The death rate is falling more than 2% each year, about twice the pace of the previous decade. That means more than 10,000 people's lives have been saved each year.

"Years of nagging and pleading by health officials are finally beginning to pay off, experts say, in smoking cessation and increased use of mammograms, colonoscopies and other screening tests for colorectal and prostate cancer," in Denise Grady's words in today's NY Times.

But "it's still a minority of individuals that undergo screening for colon cancer. If everyone were screened appropriately, these incidence numbers would fall even more dramatically," said Dr. Neal Meropol of the Fox Chase Cancer Center.

Advice: Prevention can work.

Read another prevention story by Denise Grady, or read her source story in today's New York Times.

Now the West Point grad leads a different fight: Iraq veterans' health care

After his commission from the U.S. Military Academy at West Point in 2000 and basic training, Marc Giammatteo was deployed to Iraq in April 2003. In nine months in Iraq, Marc led 100 combat missions before he was severely injured by a rocket-propelled grenade during a January 2004 ambush. The grenade penetrated his vehicle, tore off the outside half of his right leg from knee to ankle and caused multiple shrapnel wounds to his body.

Over two years he had more than 20 surgeries at Walter Reed Army Medical Center, in Washington, D.C. Surgeons saved his permanently damaged leg. While recovering from his wounds he became an unofficial patient advocate, testified to the Committee of Veterans' Affairs and consulted with the secretary of the Veterans Administration, the secretary and deputy secretary of Defense, and two chairmen of the Joint Chiefs of Staff on behalf of wounded service members from operations Iraqi Freedom and Enduring Freedom.

Earlier this year, President Bush named him to his Commission on Care for America's Returning Wounded Warriors. Under his leadership, the Commission recommends creating comprehensive recovery plans, restructuring the disability and compensation system, aggressively preventing and treating post-traumatic stress disorder and brain injury, strengthening support for families, rapidly taking patient information from the Department of Defense to the Veterans Administration and recruiting and retaining first-rate professionals for the Veterans Administration.

Advice to injured veterans: Become strong advocates for yourself and your fellow veterans, like Marc.


Read another Iraq story, or read more from the source article by Scott Whipple in New Britain [CT] Herald.

It was always a good day: Recovery from heroin addiction

Jessie Skillman of Waynesboro, Virginia found his escape from the real world by snorting heroin for 18 months.

The drug fueled a false optimism.

"It was always a good day," said the 24-year-old Jessie, who at one point was spending $75 to $100 a day on the drug, and traveling as far as Baltimore to get it. He graduated to heroin after earlier taking pain medications such as Vicodin and Dilaudid for a thumb injury.

Jessie's world came crashing down in 2005, when he blacked out and wrecked his car on U.S. 250 outside Waynesboro, and was stopped by police for driving with three flat tires and part of a tree stuck in his windshield wipers.

Already on federal probation, Jessie's probation officer suggested he enter detox treatment, which he did through the Valley Community Services Board.

"I stayed in bed and just shook," he recalled. Jessie survived the seven-day detox program with the help of counselors and group therapy. And after his initial treatment, he committed to a three-times-a-week outpatient program for nine months that included group therapy and work with counselors for two hours a session.

"The other patients pull you through. You become a family," said Jessie, who also credits counselors with listening and helping him beat his addiction.

For Jessie, his bout with heroin "was a terrible experience, a nightmare, the first thing I thought about in the morning." But now, he is concentrating on his work as a caterer.

Jessie’s advice for any person with a substance abuse problem: "Get detox and get yourself through. Go in for after addiction treatment and come out clean."


Read another addiction recovery story, or read more from the source article by Bob Stuart.

We were halfway down the hall before someone heard me yelling: A hospital transport error

It was 4 am, but Gillian Trumbull was wide awake. The 24-year-old Chicago woman knew she had to stay alert, having had many hospital stays.

She was waiting to be taken to a heart test. Instead, a hospital employee said he was taking her for dialysis, a treatment for kidney failure. He had confused Gillian with the patient in the next bed. He ignored Gillian’s protests and began wheeling her out the door.

"We were halfway down the hall before someone heard me yelling," she said. "A nurse manager said, 'She’s pretty lucid. I think she knows what she is saying.'"

Advice: Feel free to ask that a family member or patient advocate be with you, involved in your care.

Read another wrong patient story, or read Liz Szabo's source story in the Feb. 5, 2007 issue of USA Today.

She’s back home: Recovery from addiction in a residential facility

Myra Williamson is back home. She's moving into a house just around the corner from where she grew up - and where, not so coincidentally, her downward spiral began.

 "I spent most of my life in this community," Myra said as she prepared to move into a newly refurbished home at Monroe and Lexington streets. "I became addicted here."
" She had to leave town about 10 years ago to get the kind of drug treatment she felt she needed, but today, Myra will celebrate the opening of a residential facility in which she will help others fight their own addictions - without leaving the Southwest Baltimore neighborhood.

Myra will be the in-house manager of a new transitional home for women in drug treatment, through the initiative of Recovery in Community. She said she's "loving the thought" that she can now help provide what wasn't available to her back when she needed a place to live as she struggled toward recovery.

 "I had a nice job, a home, a car, and was blowing all that," Myra said of her use of first cocaine and then crack cocaine. "I knew I needed some help, and I started trying some out-patient programs, but it was not working." 

Instinctively, she knew she needed to be in a more structured environment rather than living on her own, and a friend ended up taking her to Philadelphia, where she moved into a group home. Ultimately, she beat her addiction and even became a manager of a similar facility. On a visit to family in her old neighborhood in Baltimore, she met RIC's director, Lena M. Franklin, and eventually was hired to manage the group's new residential facility.



"The farther people have to go, the less likely they are to go," said Jane Harrison, who as senior program officer at the Abell Foundation helped design RIC and now serves on its board of directors. "You have to give people the tools to be able to live in the community that they're from."

Among the first residents of the new house will be Cherese Roberts, 33, who has been clean for a year thanks to RIC's drug treatment programs. While living in a neighborhood where drugs are so readily available might seem like it would hinder recovery, Cherese said it's been just the opposite. 

"Everything out there," she said, "is showing me what I don't want to be a part of."


Advice to people in recovery: Look for ways to help others who are fighting the fight that you're winning.

Read another recovery story, or read Jean Marbella's source story or see the video in the Baltimore Sun.

He always took the blows in stride: Multiple concussions in athletes

In his years as a Harvard University defensive tackle and a professional wrestler, Chris Nowinski has been leveled by a helmet-to-helmet collision, based in the chin, and kicked in the head. He has been knocked unconscious, seen double, and forgotten where he was or what he was supposed to be doing.

Chris says he always took the blows in stride, getting back into play as soon as he could, sometimes within minutes of the injury. He handled it the way he'd handle any other injury.

"Guys work through all sorts of pain," he says. "If everyone took a day off because of pain, no one would show up to work. I just considered it like a normal bruise."

But concussions, he would find out later, aren't like any other injury. The cumulative effect of six concussions ended his career with World Wrestling Entertainment in 2004 and left him struggling with chronic headaches and memory problems.

Today, Chris is a crusader, raising awareness about the dangers of concussions through the Boston-based Sports Legacy Institute.

Multiple concussions also have had serious lasting effects for Troy Aikman, the Dallas Cowoys quarterback; San Francisco Giants catcher Mike Matheny, New England Patriots linebacker Ted Johnson, and NFL players Andre Waters and Terry Long, among others.

Advice for parents of high school football players: Get your son to a physician if he shows these symptoms after a concussion: headache, dizziness, problems sleeping, imbalance or lack of coordination, fatigue, sensitivity to light or noise, difficulty remembering or concentrating, difficulty thinking clearly, work-finding difficulty, irritability/moodiness/ impulsiveness, or feeling depressed or anxious.

Read another athlete’s concussion story, or read Lisa Phillips' source story in the September/October issue of Neurology Now.

Curt was able to get rid of one curse – let’s see if he can get rid of another: ALS patient advocate

Bruce Statham wasn't dying of Lou Gehrig's Disease, he was living with it. For more than a decade after his diagnosis, he lived on, and became a spokesman abut the disease. He helped raise funds for research on ALS, also called Lou Gehrig's Disease, and helped Harvard Medical Students understand what is was like to live with the disease. He died this week at age 39, of complications from ALS.

He worked with the Angel Fund, a nonprofit that raises money for research at the Cecil B. Day Lab for Neuromuscular Research at Mass General Hospital. There, soon after the Boston Red Sox won the World Series, he was invited to introduce pitcher Curt Schilling, who raises money for the National ALS Association. He said, "Curt was able to get rid of one curse; let's see if he can get rid of another."

Advice for survivors: See if you can help others with your disease by being a patient advocate

Read another ALS story, or read more from Bryan Marquard's story in the October 9 Boston Globe.

The surgeon later admitted he was addicted: A spinal surgery lawsuit

Demian McElhinny, 33, a former hospice pharmacy technician in El Paso, recently settled claims against a neurological surgeon for spinal surgery that left him and his family impoverished. He said he emerged with "pennies on the dollar." His wife, Kelly, found work as a school bus driver, he said, while "I'm at home being a housewife to my two boys."

Demian's surgeon, Dr. Paul Henry Cho, later admitted to the medical board that he was addicted to a narcotic cough syrup and had written fraudulent prescriptions. Dr. Cho's license to prescribe drugs was suspended, although it was soon restored, and he moved from El Paso to a hospital in Fort Worth.

Demian collected so little because four years ago, Texas voters passed an amendment to the state constitution that limits malpractice awards.

Advice to victims of malpractice: If state law prevents you from collecting for your injury, your best form of accountability may be telling your story to the public.

Read another neurosurgical error story, or read the source story by Ralph Blumenthal in the October 5, New York Times.

Hospitalists improve quality of care

Hospital staff are working so fast that it's easy for them to forget to do something, or to give short shrift to some patients. It's good to have a special kind of doctor, who works full-time in the hospital, focusing only on inpatients – a "hospitalist."

A study last month found evidence of the positive role that hospitalists play. Patients with serious illnesses like stroke, congestive heart failure, and pneumonia recovered the fastest when cared for by hospitalists. On average, care by hospitalists enabled patients to leave the hospital about a day sooner than patients treated by other doctors. As Dr. William Southern, the lead author of the study, said, "We believe hospital-based physicians offer the highest quality of care."

Advice for patients choosing a hospital: Look for a hospital that employs hospitalists.

Labels: hospitalists, archives of internal medicine, William Southern, length of stay, hospital readmission, complex discharge planning

Read more useful advice from a different study in the same medical journal , or read more from Sena Desai Gopal’s summary in Monday’s Boston Globe, or the Sept. 24 issue of Archives of Internal Medicine.

A matter of iron: Patient compliance

Dr. Larry Kirkland's story:

What I've come to think of as "the ferrous sulfate affair" may seem trivial but it was representative of the conflicts that occurred during my stay. Because of anemia from a chronic infection secondary to a pressure ulcer, I was placed on ferrous sulfate three times a day. That is not a prescription drug [as it can be bought over the counter]. Since I knew that ferrous sulfate can irritate the stomach, I requested that the pill be left on the table and told the nurse that I would take it during my meal, which had just arrived. The nurse said, "I can’t do that." I thought she was kidding, so I explained my concern and assured her that I'd take the pill 10 or 15 minutes later, adding jokingly, "I promise not to try to sell it." Her response was to pick up the pill cup and say, "I'll wait until you're ready." When I told her it might be a few minutes, she repeated that she'd wait. Rather than prolonging this demeaning and unnecessary charade, I told her to cancel the medication order.

Although I knew it would mean that the attending physicians wouldn't know all the medications I was taking, I had my wife bring some ferrous sulfate tables from home. The fact that I needed the iron was never mentioned in the negotiation over when I took it. Instead of honoring the patient's right to be involved in decisions, the nurse was practicing a form of "directly observed therapy," an approach usually reserved for patients who won't comply with antituberculosis therapy, drug addicts in methadone programs, prisoners, and mentally incapacitated patients.

It's possible that such a rigid approach had evolved at this hospital out of dealing regularly with emotionally fragile patients….But if the patient is a physician…conflicts will arise if he is treated in the same manner as, for example, a patient with brain damage….

I'd never before come across so many staff members seemingly fearful of using their own experience, common sense, and judgment in making a decision, nor so many who cited "policy” or "regulations" to explain a particular action. I could single out individuals, but it seems likely that a share of the blame for the pervasive disrespectful treatment I encountered at this hospital should be assigned to the hospital administration and the priorities it transmits to the staff through training, example and regulations….

I remember a time when the patient, not regulations or the "bottom line," was the central driving force in the system. Maybe this is naïve, but I fail to see how a return to more personal and compassionate attitudes would reduce safety or be economically unsound.

Advice to hospitalized patients on taking their home medications: Stick up for yourself, and discuss this with nurses and doctors in the hospital.

Read our Hospital Patient Bill of Rights story, or read Dr. Kirkland's source story in the June 2007 issue of the American Journal of Nursing.

Pulling in the same direction: Alcoholics Anonymous

I sat near the back and looked out over the room. Familiar faces, unfamiliar faces, all of us more or less like John, pulling in the same direction. Then I had an image of every person in that room climbing into bed that night, all fifty of us getting into our beds clean and sober, another day without a drink behind us. It was a simple image but it filled me with a range of complicated feelings: appreciation for the simple presence of all those people, admiration for their courage and strength; a tinge of melancholy for the amount of pain it must have taken each and every one of them to put down the drink; affection for their humanity.

I didn't realize until hours later that there was a name for that feeling. It's called love.

Advice to recovering drinkers: Find a sustaining source of love to support you in your recovery.

Read another of our AlAnon stories, or read more from Caroline Knapp's memoir, Drinking: A Love Story.

A steadfast partner: Sobriety and relapse

From Caroline Knapp's memoir:

Michael and I still see each other most nights, but I am taking time to be alone, trying to understand myself as a person a little better before I make any choices about myself as part of a couple.

Choice is the key word here, and it's still a relatively foreign one for me. For the first time the relationship with Michael isn't washed over by waves of alcohol or haunted by Julian; for the first time I feel I'm with him because I've decided to be, not just because I've been buffeted in his direction by circumstances or pain or need. There's great relief in that: I often look at Michael these days with the sense that I'm finally seeing the relationship through glasses that have the right lenses. Sobriety has helped me appreciate his kindness with greater purity and depth, as though it exists in its own right now and not merely as a measure of comparison to Julian. I can't imagine a more steadfast or supportive partner: Michael hasn't had a drink in front of me since I went off to rehab, and he's as bolstering about my sobriety as anyone in AA. These days he does a great imitation of me in the kitchen before a dinner party, compulsively trying to drink a glass of wine and smoke a cigarette and stir a sauce all at the same time, and I appreciate his ability to capture the frenzied insanity of those days and to help me laugh at it too. If I've been through a war, he's been in charge of triage through most of it, and sometimes the gratitude I feel toward him wells up so powerfully I think I'm going to burst.

Advice to drinkers: Find a loyal friend to help you stay sober.

Read one of our stories about a friend as patient advocate, or read more from Caroline Knapp's memoir, Drinking: A Love Story.

From Tragedy to Safer Care: A stillborn baby

Seven years ago, a series of errors befell Mrs. W. while she was an obstetric patient at Beth Israel Deaconess Medical Center in Boston, and her 9-month old fetus was stillborn. Mrs. W. herself needed a hysterectomy, and 18 days of subsequent hospitalization in the intensive care unit.

According to the Chief of Obstetrics in the Journal of the American Medical Association article, staff made several errors in her care. After she started labor, doctors discharged Mrs. W. back home, though her blood pressure should have led doctors to keep her in the hospital. When she was re-admitted at midnight, a few hours later, doctors did not consider that preeclampsia could be involved. Doctors ordered lab tests, but the tests were never sent, due to miscommunication. When the fetus' heart rate exhibited a worrisome "non-reassuring" pattern of "late decelerations," a C-section should have been promptly performed at 5:30 am.

Several factors contributed to the errors. The attending physician had been on call for 21 hours, and fatigue may have led the doctor to stick to a diagnosis despite evidence to the contrary. There were an unusually high number of women giving birth there at that time. Residents were afraid to speak up to the more senior doctors. At age 38, Mrs. W was relatively old for a first-time birth. The hospital had been experiencing severe financial difficulties, which might have affected nurse staffing levels. The crisis occurred in the early morning. Mrs. W. did not know about the drug used to induce her labor.

In the words of Mrs. W's husband, "That night, I saw residents who were afraid. They were either unable or unwilling to get the doctor, when clearly things weren’t going the right way."

As a result of the multiple tragic errors in her care, doctors and other staff aggressively have since acted to safeguard their system of care to prevent similar errors. Indeed, they were able to reduce errors by about 25%.

This improvement led the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to honor the hospital last week with the John M. Eisenberg Patient Safety and Quality Award.

I hope the improvement will be permanent. Two factors, however, will make this doubtful. First, hospital policy continues to have attending physicians on call for 24-hour shifts, despite the Chief's clear attribution of overwork and fatigue as significant contributing factors. Second, the Chief is leaving the hospital, and it is unclear whether his successor will as strongly advocate team communication ("crew resource management," from the aviation industry).

Dr. Sachs' advice to patients and their spouses, patient advocates: Ask the attending physician, "What's going on, and what are the plans?"


Read one of our stories by a pilot who is expert in crew resource management, or read more from the discussion among doctors in the August 17, 2005 issue of the Journal of the American Medical Association.

My wife made the appointment for me: PSA test and prostate cancer prevention

Adam’s story:

My name is Adam. I’ve been diagnosed with prostate cancer at the age of 45.

There is NO cancer in my family. I had absolutely no symptoms.

In May of 2007 after some blood work from my annual physical a red flag occurred. My PSA jumped from 1.0 to 3.5 over a 2-year period. PSA (Prostate Specific Antigen) is a test that screens your levels of protein in the prostate gland to se if there is danger of cancer. The rise in my PSA led me to see a urologist who had my prostate gland biopsied. It was this test that showed I have a very aggressive cancer (Gleason 9) growing inside me. The Gleason score of 9 basically said I had the most extreme form of growing cancer and the prognosis is NOT good.

This PSA test has been approved by the FDA to be tested for men over the age of 50 unless there IS cancer in the family. For some strange reason, my internist runs the test for every man over the age of 40. HE probably saved my life. Why??? Because I was tested early and often. Most people who get a Gleason score of 9 or 10 in their 40s do not have a good chance of surviving more than 5 years. The reason is that the cancer is growing so fast that it is likely spread to other parts of the body. Because I was tested, it looks like my cancer was caught early enough so that my prognosis is better than most with a Gleason 9 in their 40s.

The irony of this is that my wife made the appointment for me. You know you get wrapped up with work, family and life. Never seemed able to make the time. I just kept coming up with excuses. Thank God she made this appointment! Don’t be like me!

Adam’s advice to middle-aged men: Make sure you get your annual check-ups and make sure your doctor tests for PSA. They are already taking blood for other tests; they can do a PSA too.

Maybe this exam will save your life or a family member or friend. It most likely saved mine.

Read another story of how a wife saved her husband.

Rats and mice get better protection: FDA and informed consent for human subjects

The case of Audine Graybill demonstrates the flaws in the system. According to the U.S. Food and Drug Administration, in the spring of 2005, she decided to try an experimental drug to treat mania associated with bipolar disorder. The consent form that she signed on May 29 said she could change her mind at any point in the study.

She checked into High Pointe healthcare in Oklahoma City, a psychiatric center owned by a psychiatrist, Dr. David Linden. On June 3, she changed her mind and asked to leave.

Dr. Linden refused to let her go.

On June 6, she was given the experimental medicine. Her lawyer, Anthony Sykes, presented a writ of habeas corpus to High Pointe to obtain her release. But the hospital staff neither obeyed it nor gave it as requested to Dr. Linden.

More than nine months later the FDA discovered many other problems there, but only this summer finally wrote a warning letter. Meanwhile, the Oklahoma Board of Medical Licensure and Supervision suspended the doctor's license.

Dr. Linden has conducted clinical trials for most major pharmaceutical companies and continues to do research, according to his website.

According to today's front-pagestory in the New York Times, Audine's experience is quite common because of lax management by the FDA.

"Rats and mice get greater protection as research subjects in the United States than do humans," said Dr. Arthur Caplan, Chairman of the Department of Medical Ethics at the University of Pennsylvania.


Advice to human subjects in clinical trials: Talk through your rights with a patient advocate or lawyer.

Read another of our informed consent stories, or read Gardiner Harris’ source story in today’s New York Times.

Even a girl in Nunavut: MRSA infections

MRSA is a problem everywhere; it even reaches into Nunavut, in northern Canada, west of Greenland.

Dr. Isaac Sobol, Nunavut's chief medical officer, who recently returned from Arviat, would not confirm any deaths due to MRSA in the community. But a reliable source told Nunatsiaq News that the superbug had killed a girl somewhere in Nunavut.

Dr. Sobol did say there are "several" other cases of MRSA in Nunavut, in various communities, although he did not want to say which ones.

MRSA has been widespread in Canadian hospitals since 1981. Community-acquired MRSA has also cropped up in aboriginal communities in the prairies over the past decade.

Dr. Sobol said a couple of Nunavut's MRSA cases have been linked to infection from hospital stays. However, MRSA has also struck Nunavummiut who have never been to a hospital.

In communities, most of the transmission appears to be from people with active MRSA skin infections. Studies show First Nations and Inuit are six times more likely to get MRSA at home because MRSA spreads easily in overcrowded living situations.

MRSA can be spread by direct contact such as kissing, sneezing or indirect contact, such as touching a surface an infected person has touched.

Dr. Sobol said Nunavut is taking steps to contain MRSA in the affected communities. He's prepared to ask stores in Nunavut to stock and promote the sale of hand sanitizers at reasonable prices. But containing the spread of MRSA may be difficult in places such as Arviat where there is acute overcrowding in most homes.

Advice to people in crowded homes: Don't share toothbrushes and face towels.

Read another of our grim MRSA stories, or read Jane George's source story in the Sept. 21 Nunatsiaq News.