Familiarity breeds conclusions: Misdiagnosis of a rare disease

A Boston couple adopted a Vietnamese baby girl, Shira Stein (a pseudonym). Before leaving Vietnam, Shira was coughing. On landing, she seemed dehydrated, but refused to drink. Her new parents brought her to a Harvard teaching hospital the next day, where she was admitted to the intensive care unit (ICU) with severe pneumonia. Doctors found five potentially lethal different infections, which implied an immune system deficiency. The doctors concluded she had severe combined immunodeficiency disorder (SCID)—an inherited condition that is extremely rare in girls.

Doctors at the hospital were very familiar with SCID and similar genetic abnormalities. But Shira’s mother thought otherwise. Week after week, she remained certain that Shira would live. The doctors suggested a bone marrow transplant. Shira’s mother conducted her own research into SCID, and doubted the doctors’ diagnosis. Instead, she suspected that Shira had a nutritional deficiency. Though immune tests had shown Shira had few T cells, her mother insisted that doctors retest her. Shira’s T cells were normal; she did not have SCID. The bone marrow transplant might well have killed her.

Advice to patient advocates: Respectfully ask the doctor what other diagnosis might account for the symptoms.

Read another misdiagnosis story, or read the source: Dr. Jerome Groopman’s new book, How Doctors Think, as reviewed by Michael Crichton in Sunday’s NY Times Book Review.

My dog has a better medical record than you do: Electronic medical record

My dog Jackson had a well-dog checkup recently with his veterinarian.

A month earlier, we had received a postcard reminding us that he needed certain vaccinations and was due for a yearly checkup. (Does your doctor’s office remind you?) When I phoned the office to make an appointment, they asked me my last name, and looked up his record on the computer so they could verify for me which shots he would need, and what the purpose of the visit would be. (Would your doctor’s office do that?) Knowing he’d need a fecal test, they suggested I bring in a (poop) sample, and gave the necessary instructions. They entered the information into their computer scheduling program.

At the visit, much of the equipment was not much better than that of a doctor’s office: a stethoscope to listen to his heart, a thermometer to measure his body temperature, a digital scale built into the floor, a pair of highly trained hands and eyes for the physical exam.

At the end of the visit, the vet handed me an individualized, four-page, neatly formatted and typed summary of what he had found, for each bodily system, with his advice on diet, exercise, and hygiene, a thumbnail photo of Jackson, lab test results and their interpretation, and target dates and types of future vaccinations. (Does your doctor routinely do that?) At check-out, I also received a receipt and itemized bill, which clearly named on an 8.5 x 11 inch sheet each shot and service Jackson had received, and showed the name of the receptionist, phone number, and future vaccine and exam dates, to keep for our records. (Does your doctor do that?)

They even advised on the preferred flavor of the toothpaste for daily brushing: poultry. The care was Mmm-Mmmmmm good!

Advice for people searching for a doctor: Find a doctor who uses an Electronic Medical Record to educate patients and themselves about the care you need.

Read another story about an electronic medical record.

What chemo dose should my 150-pound Golden Retriever take?: An adverse drug reaction story

Dr. Lawrence Burgh has a sober outlook on life. A 48-year-old physician whose career has centered on treating seriously ill patients, he himself was diagnosed with cancer in December 2006. He has begun dosing himself with DCA, a simple laboratory chemical that has never before been used to treat cancer in people.

Last month, he learned the cancer in his thigh had spread to his lungs. "My prognosis is very poor," he says. "Standard chemotherapy would give me only a slim chance of survival at five years." So he turned to DCA, after reading about the promising lab experiments in New Scientist (20 January, p 13).

But Lawrence (a pseudonym) has yet to see DCA make any impact on his cancer. Medical scans on 19 March showed that the primary tumour in his thigh has shrunk, and is less active, but this may be due to the delayed effects of radiotherapy and chemotherapy Burgh had in January. The number of metastatic tumors in his lungs has not changed since last month, and they are larger and more active. "These results are very preliminary," he stresses, "but I was really hoping for better results." On 21 March, he stopped taking the drug after noticing symptoms which by 24 March included a numbness in his hands, which he believes to be a sign of a disease of the nervous system (neuropathy), and a hypoglycemic attack. He advises other people with cancer not to self-medicate with DCA except under medical supervision. "I am concerned others may try this drug on their own in desperation," he says. "DCA is chemotherapy, a serious drug with potentially serious side effects."

DCA is not patentable as a medication, so there is no incentive for pharmaceutical companies to run the clinical trials necessary to make DCA legal as a cancer treatment. So two Web sites sprang up: one with research papers and chat rooms to discuss DCA, and another site selling DCA supposedly for use in pets with terminal cancer. Both sites are run by a California man who operates a pest-control company. The FDA is investigating both web sites because DCA hasn't gone through clinical trials or been approved for human use. Even marketing DCA for pets is illegal. Even so, researchers have been getting emails from people asking for dosage information for, say, a 150-pound "Golden Retriever."

Advice to patients with advanced cancer: Read Linda Geddes’ article in the New Scientist, the research, and the web site of the Abigail Alliance, which advocates faster drug development for critically ill patients, then discuss it with your oncologist.

Read another chemo story.

Thanks to April Rabkin of Mother Jones for summarizing the New Scientist article.

April First: New Drugs for Men

With Viagra such a great medical success for increasing men's sexual prowess, Pfizer is bringing forth a whole line of drugs oriented towards improving the performance of men in today's society.. Here are a few of the new ones:


DIRECTRA - a dose of this drug given to men before leaving on car trips caused 72% of them to stop and ask directions when they got lost, compared to a control group of 0.2%.

CHILDAGRA - Men taking this drug reported a sudden, overwhelming urge to perform more child-care tasks especially cleaning up spills and "little accidents".

PROJECTRA - Men given this experimental new drug were far more likely to actually finish a household repair project before starting a new one.

COMPLIMENTRA - In clinical trials, 82% of middle-aged men administered this drug noticed that their wives had a new hairstyle. Currently being tested to see if its effects extend to noticing new clothing.

BUYAGRA - Married and otherwise attached men reported a sudden urge to buy their sweeties expensive jewelry and gifts after talking this drug for only two days. Still to be seen: whether the drug can be continued for a period longer than your favorite store's return limit.

NEGA-SPORTAGRA - This drug had the strange effect of making men want to turn off televised sports and actually converse with other family members.

FLYAGRA - This drug has been showing great promise in treating men with O.F.D. (Open Fly Disorder). Especially useful for men on Viagra.

PRYAGRA - About to fail its clinical trial, this drug gave men in the test group an irresistible urge to dig into the personal affairs of other people. Note: Apparent overdose turned three test subjects into "special prosecutors."

LIAGRA - This drug causes men to be less than truthful when being asked about their sexual affairs. Will be available in Regular, Grand Jury and Presidential Strength versions.

Advice: Laughter is the best medicine.

See another joke, or read more at the source.

I was lucky, having blacked out on stage [misdiagnosed/undiagnosed heart problems]

Sir Roger Moore commented, "I was lucky: having blacked out on stage, I received excellent and rapid medical attention, and I now have a pacemaker which kicks in whenever my heart rhythm requires a correction. Thousands of sufferers aren't so lucky." Their blackouts ("syncope") may have been diagnosed as epilepsy; indeed, perhaps a third of people diagnosed with epilepsy actually are misdiagnosed. Blackouts can be an early sign of heart irregularities.

STARS (Syncope Trust And Reflex Anoxic Seizures) was founded by Trudie Lobban in 1993 after her daughter Francesca was diagnosed with Reflex Anoxic Syncope with the support of Prof. J Stephenson, Consultant Paediatric Neurologist - Royal Hospital for Sick Children, Glasgow, Scotland.

STARS aims to alleviate the effects of, and provide support and information on, syncope to those in distress as a result of these blackouts, whether suffered by themselves or as a member of the family group.

STARS patrons include Sir Roger Moore, Twiggy and celebrity chef John Burton Race. Sir Roger and John Burton Race have both suffered from syncope and have pacemakers fitted.

Trudie Lobban added, "When patients are empowered with important information they can help their doctor better understand the symptoms and nature of their blackouts. This can help avoid a long list of referrals, misdiagnosis and inappropriate treatment before an accurate diagnosis is secured."

Advice for patients with blackouts: Patients and parents should get and use the STARS checklist.

Read another misdiagnosis story, or read the source article in Medical News Today.

He’d repaired about 120 injuries after another doctor’s attempt: A surgical error lawsuit

Like thousands of other patients every year, Katherine Adams learned that a commonly performed surgery to remove the gallbladder can carry serious risk. A surgeon cut her bile duct during the operation, a mistake that can lead to serious complications and death. It's also one of the biggest causes of surgical malpractice claims. Katherine won $560,000 in an Illinois lawsuit, which was upheld upon appeal.

Katherine underwent reconstruction surgery, which initially appeared successful. Now, less than three years after that, it is not clear whether she remains healthy. She may need to be monitored for the rest of her life, according to an expert surgeon who testified at the trial. His qualifications? He had repaired about 120 injuries to the bile-duct system created after another doctor attempted a laparoscopic cholecystectomy. In other words, this complication has occurred so often that now a surgeon has become an expert at fixing this particular surgical error!

Surgeons typically remove gallbladders if a patient has serious gallstone problems. The modern-day gallbladder operation, performed by inserting high-tech equipment and a camera into four small incisions in the abdomen, has become the standard. However, studies have found bile-duct injuries occur from two to 10 times as often in laparoscopic surgery as in the older, large-incision surgery

Advice to people facing gall bladder surgery: Ask your surgeon the most likely complication, and how s/he will prevent it. For this particular form of surgery, the surgeon may use a type of X-ray called an intraoperative cholangiogram.

Read a famous gall bladder surgical error story, or read the appeals court’s judgment in the lawsuit, or David Armstrong’s source story.

I don't think I can work with you if you're going to be so demanding: A medication error story

This story is from a member of the Consumer Health Quality Council of Health Care for All:

I've told versions of this story in so many sterile white rooms. When I was 14, I suffered from a series of unexplained seizures, and ever since then, debilitating migraine headaches. It is said that the function of the human brain is one of medicine’s last remaining mysteries. I believe that the function (or should I say dysfunction?) of our health care system is equally confounding. When I first moved to Boston after college, my seizures and headaches were well- controlled.

Soon after I started my first job, I was stricken by an intractable migraine. I was newly endowed with health insurance, so I picked a doctor’s name out of a directory. I was 22, and it seemed as good a method as any for choosing a PCP. My doctor asked me briskly why I'd come, and I explained about the relentless headache and my complex neurological history. I requested a referral to a neurologist. "I don't think you need to see a neurologist,” she said dismissively. “I want you to try taking Sudafed--" she scribbled the dosage on a pad-- "and see if that helps.” I knew my condition—and my suffering--was far beyond the powers of Sudafed, and I tried to convey that. But the doctor smiled tightly, gathered up her papers, and left the room. When the Sudafed failed, my PCP informed me that no in-network neurologist could see me before March, which, after all, “was only two months away”.

After days of diligent effort, and calls to three different hospitals, I finally wrangled an earlier appointment. By then I was enraged. The pain had become excruciating, and so had the indignity of having to negotiate the privilege of medical care. I recounted the whole saga to the neurologist. He nodded thoughtfully, stroking his beard and taking notes. I hoped he was jotting down ideas for fast- tracking my future appointments. Finally, he asked how I was feeling. I sighed, trembling now. "I feel horrible. I'm really hoping you can give me something for the pain." The physician paused and then his face closed. "I don't think I can work with you if you're going to be so demanding. I'm going to refer you to another neurologist; hopefully he can accommodate you better." I nodded politely, deeply humiliated. I thought about the rain outside, the missed morning of work, all the effort wasted for this referral, for which I'd lobbied so hard. I believe that it was only through family connections that I gained access to a headache specialist who ended my misery and prescribed medication that has helped me for years.

But sadly, the story doesn’t end there. After several years of equilibrium, the intensive stress of graduate school wreaked further havoc on my system. I met with yet another provider, who prescribed a medication that I knew lowers seizure threshold. In fact, I said, I had taken the same medication as a teenager, right before I experienced my first seizure. The doctor was cavalier. “Those seizures were almost 20 years ago; I think you’ll be fine.” Without consulting any member of my health care team or reviewing my medical records, he wrote me a prescription. Then he left for vacation.

Exactly two weeks later, a grand mal seizure rendered me unconscious. I fell down on the sidewalk and woke up in an ambulance. Completely disoriented, I barely knew where—or who—I was. I spent the night in the hospital, and then began the process anew. Finding specialists. Begging for appointments. Demanding coverage from the stingy grad school health insurance. Eventually stabilizing the situation with different medications (expensive drugs that I will have to take for the foreseeable future) and caring providers.

I remain stunned that I received such uneven care in a city renowned for its medical resources. I’ve learned that the best providers are the most difficult to access, and that our flawed and complicated health care system often undermines the best intentions of health care and insurance providers. Through my experiences, I’ve learned to advocate for myself and my health. Through the Health Care Quality Consumer Council, I hope to advocate for systemic change.

Advice to patients: Become an advocate, and get an advocate.

Read another wrong drug story. Subscribe to the source Health Care for All newsletter here.

Surgeons couldn’t reverse the damage: A healthcare access parable

While his mother was seeking help for his younger brother whose six decayed teeth were causing him pain, Deamonte Driver had a toothache from a single abscessed tooth. A dental abscess is a collection of infected material, pus, resulting from bacterial infection of the center, or pulp, of the tooth. It often is a complication of tooth decay—an untreated cavity.

Bacteria from the abscess spread to his brain. By then, two operations and more than six weeks of hospitalization could not reverse the damage. Deamonte died at age 12, in early March.

Deamonte’s mother worked at several jobs. Even so, the family had to live in a homeless shelter. In changing addresses, they lost Medicaid coverage, which would have paid for the life-saving treatment. US congressmen discussed his case yesterday in hearings. Perhaps hearing his story will ultimately save other children’s lives.

Advice: Let your kids see you brushing and flossing your teeth—you’re their best role model.

Read another dental story, or read Diana Rossetti’s source story.

An Accident, said the Medical Examiner: Anna Nicole Smith's Overdose/Drug Interaction

She wanted to live a long, long time. She had the money, and apparently she had a willing doctor to write the prescriptions for “longevity drugs”--vitamin B12, immunoglobulins and human growth hormone. But injecting them into her buttocks somehow caused an infection, and she developed a fever of 105 degrees while she was visiting South Florida. Refusing to go to an emergency room, Anna Nicole Smith instead took an ice bath, and took antibiotics and flu medicine. This helped her regain her strength over the next few days, according to the Medical Examiner, and she kept taking choral hydrate to help her get to sleep. The Medical Examiner found traces in her body of muscle relaxants, pain relievers like methadone, and several anti-anxiety medicines. He said combined drug intoxication—of prescription drugs--had been the cause of her death, particularly from the potent sedative chloral hydrate. Chloral hydrate was popularly used in the 1800s, but is rarely prescribed nowadays.

An intestinal flu and a bacterial infection, possibly from a contaminated needle, were contributing factors. No illegal drugs were found in her body. She had been in “outstanding general spirits” in the preceding days, so she had clearly not committed suicide. The police chief found no evidence of foul play.

Anna was 39 years old, and had been a former Playboy centerfold, model, and reality TV star.

Advice: If you have more than one doctor, make sure each of them knows all of the prescription and over-the-counter medications you are taking.

Read another adverse drug reaction story, or read Abby Goodnough’s story in today’s New York Times.

Someone has been doing their homework: A Misdiagnosis Story

At 23 weeks pregnant, Tarra Lyons was on a trip with her husband, Dave Miles, when she noticed she had been leaking fluid for a few days. Lyons visited a local hospital and was examined and monitored for four hours. She was told it wasn't amniotic fluid and was sent home. By the time they got back to Berkeley, Lyons had a fever. Doctors discovered she had no amniotic fluid left. There was no way they could save her son Morgan. He was born alive at 1 pound and died less than two hours later.

"I was a high-risk pregnancy and I wasn't treated as such," Lyons said of the doctors at the first hospital she visited. She was later diagnosed with an incompetent cervix. After spending months researching her options and talking with other parents through online support groups, the 41-year-old believed getting a stitch called a cerclage to keep her cervix closed was her best course of action.

When she learned she was having twins, she was even more convinced it was the right thing to do. But her OB told her the procedure was unnecessary. She sought a second opinion and got a similar response.

"He had a preconceived idea that incompetent cervix was extremely rare and could not be the cause of the loss," Lyons said. She started to doubt the doctors and the treatment she was getting. "I felt like they didn't care, like I was the only one who cared," Lyons said. "When I would point out the research, the doctors would say, 'Oh someone has been doing their homework.' And I thought, 'Yeah, but you're not.'"

Seeking a third opinion, she went to a well-known high-risk perinatologist in San Francisco who finally advocated the cerclage. He told her that common practice is to perform it only after at least two losses. He said while 25 percent of the cerclages performed might turn out to be unnecessary, he would rather do one that is unnecessary than not do one that is.

After doing the cerclage, the doctor told Lyons he was 100% convinced she had needed the procedure: Her cervix had already dilated, and "looked like I had had several kids."

"I had to trust my judgment, I had to listen to my intuition," Lyons said. "I am so glad I changed doctors and asked for another opinion." Her twins, Fiona and Pearson, were born healthy at 37 weeks in January.

Dr. Sarah Kye Price, a professor at the Virginia Commonwealth University School of Social Work, said mothers tend to become experts in whatever may have caused their loss. Price found that 25% of women in the United States had one or more fetal deaths before having a live birth. "It is important for women to be self advocating. Ask a lot of questions and take charge of their experience and not see it as a weakness."

Advice to pregnant women: Do your homework, like Tarra. Get an additional medical opinion, from a different hospital, and a doctor in a different medical group.

Read another childbirth story, or read Suzanne Pullen’s source story in the San Francisco Chronicle.

They’ve taken their grief and turned it into something powerful: A surgical error story

He was an only child, healthy, strong, and at age 22, planned on being a pediatric nurse.

 "Michael passed out," Michael's mother Patty Skolnik said. "And he woke up in the dining room." 

Michael's parents took him to the emergency room as a precaution. An X-ray of his head showed a three millimeter dot on his brain. It was a cyst. Patty sought out expert opinion from a neurosurgeon. She said there was no time for a second opinion.

 He kept saying 'die.' You're so lucky he didn't die. We have to do this right away," Patty said. "And it was like there was no choice. It was like a train wreck happening." Patty said a three hour surgery turned into six hours, and when it was over, the doctor came out and said he never found the cyst.

Months passed and Michael was moved to Craig Hospital where the family learned the realistic prognosis.

 "He is 50% blind in both eyes to the left," Patty said. "He has no short term memory. He has severe seizure disorder, and he's psychotic." What had happened to their son? 

"Everything was primarily done from the deep brain operation. That's what caused all of this to begin with," Patty said. Michael developed multi-organ failure, then later suffered a seizure, developed pneumonia, and almost three years after the operation, passed away.

"It never should've happened. It was an unnecessary surgery," Patty said. 

The Skolniks have filed a complaint with the State Board of Medical Examiners, and the case is in review.

Unknown to the Skolnicks, the surgeon had two pending malpractice cases at the time. Michael’s parents are pressing for legislation in Colorado that would make such information publicly available.

The Skolniks suffered an incredible loss, but they've taken their grief and turned it into something powerful.

Advice to patients facing surgery: Check your surgeon's credentials beforehand.

See the short, powerful videotape of the CBS news segment or its transcript, or read another surgical error story.

They can stop this human disaster: A misdiagnosis story

Serving with the Morris County, N.J., sheriff's office, Jeffrey Endean arrived at Ground Zero on 9/11 when, he remembers, The Pile "looked like a war zone or a peek into hell." It was both. For two months, Jeffrey worked in a landscape he described yesterday as "surreal" and "terrifying," and soon breathing difficulties forced his retirement. "The coughing would be violent, with my eyes bulging," he said.

He went to the doctor. He was misdiagnosed with colds and allergies, and it was only in 2005 that he began getting proper care through the World Trade Center health program at Mount Sinai Medical Center. Now 57, he suffers from scarring and thickening of the lungs, a form of asthma called reactive airways distress syndrome, severe acid reflux, chronic headaches, post-traumatic stress disorder and more.

Jeffrey appeared before the U.S. Senate Committee on Health, Education, Labor and Pensions in an effort to persuade the government to fund first-class medical care for the forgotten victims of 9/11. "We could not stop the attacks, death and continued casualties of 11 September," Jeffrey told the senators. "You have the ability to stop the human disaster."

Mayor Bloomberg testified that 45,000 workers and volunteers from all 50 states pitched in at Ground Zero. He cited studies documenting that many are sick and added that "thousands of residents, commercial workers and others have reported experiencing acute breathing problems, worsening asthma, post-traumatic stress disorder and other mental illnesses which require sustained care."

Advice for 9/11 cleanup workers: Contact the Mount Sinai Medical Center about their World Trade Center health program.

Read another misdiagnosis story, or read the New York Daily News editorial.

The bomb that got him was within his own body: A missed diagnosis story

The story of his widow, Melanie Bloom:
He had been on some really long-haul flights between New York and Kuwait in the weeks and months leading up to the war. He was sleeping with his knees up to his chin in a cramped tank night after night.

 The supply lines were dwindling and so he wasn't as hydrated....He did share with me on a phone call home two nights before he died that he was sleeping outside on top of the tank to stretch his legs because he said he had these cramps. 

Huge warning flag, but again, not having heard of DVT or knowing any of the risk factors, we didn't even think to do anything.


He had pain in his leg, and then the pain went away, he was feeling great.

 He called me the morning of the day he died. He ... sounded upbeat, he wasn't limping and everything was good.

 They were going to make the push across the Baghdad border and that night...he abruptly collapsed to the ground and died. The clot had broken free, so his leg didn't hurt anymore. But it had made its way to his lungs.


[David Bloom, NBC News correspondent, had been covering the war.]

Two million Americans will develop a DVT each year. Out of that, 600,000 will go on to develop the pulmonary embolism. Out of that number, 300,000 will be fatal.



Her Advice:
People can take a little test [on the Web] and test their own risk level, because that's the biggest piece of it - just knowing, "Do I fall into these risk categories?" and if you do, talk to your doctor.

(We're) encouraging people to take their risk assessment tool results to their physician and start that dialogue.


[If] you might have pain in the leg, you might have swelling or tenderness to the leg, and that's good if you have those warning signs because you should immediately get to your doctor and get that checked out.



Read another Iraq story, or read Dawn Sagario’s source story in the Des Moines Register.

Put ICE in your Cell Phone to Get Quick TLC in an Emergency

If ambulance paramedics need to help you in an emergency, it is useful for them to know your next of kin. If you’re unconscious, of course, it can be difficult or impossible for them to know. But if you have a cell phone, and have the next of kin clearly identified, they can call the person and you can get your family member’s help sooner—IF the paramedic knows how to immediately find the number stored in your phone.

The East Anglian Ambulance Service launched a campaign to broadly spread a free and effective way to do this, after the terrorist attacks in London in July 2005.

Advice: Add the word ICE (“in case of emergency”) to your cell phone’s address book, with the phone number of the person the emergency medical technician (EMT) should phone. To store more than one name, use the word ICE1, ICE2, etc. If you don’t know how to use the address book on your cell, tape a note with the phone number onto the phone.

Forward this to your friends and family.

Thanks to Cheryl Long of Axis 1 in Barnwell, SC, for sharing this idea. A big virtual hug to you, Cheryl! { xxooxx }

Read another emergency story, or read a 2005 article on this.

His diagnosis was a Sports section headline: A delayed diagnosis story

It’s the first day of spring, so we think of baseball. A few short years ago, David Wells helped the Boston Red Sox win their first World Series in 86 years. The lefty pitcher was known for his great curve ball, great girth, and great thirst.

Now with the San Diego Padres, the 43-year old pitcher has been diagnosed in the last two weeks with adult onset diabetes, according to yesterday’s Boston Herald. Last year, his manager had had to cancel a pitching start for him last fall because of gout in his right foot. Gout, which can be temporarily excruciating and disabling, is common among people with diabetes. With more prompt diagnosis and treatment, Wells would have had better blood circulation to his feet, which may have prevented uric acid from building up there, which caused his gout and missed start. And if the Boston Red Sox had kept him...Woulda Coulda Shoulda.

Advice for Red Sox fans: Believe! And watch out for diabetes, now growing at an epidemic pace. Make sure your off-season exercise is more than hoisting beer bottles!

Read another diabetes story .

My friends were praying for me (hernia patch surgery)

Cynthia Wilson works for a healthcare system in Milwaukee. She developed a hernia--usually a protrusion of the bowel through a torn or weak spot in the abdominal wall--and sought surgery to repair it. Her surgeon chose a Kugel patch, made of two pieces of mesh that surround a flexible plastic ring. To implant it, the surgeon folds a patch, and places it at the site of the hernia. The released ring springs back into its original shape, flattening the patch. The mesh-like material serves as a substrate for internal tissue to grow into, resolving the hernia.

Cynthia’s patch became dislocated, and pierced a hole that required emergency bowel surgery. “I went to the hospital for two weeks and my friends were praying for me,” she said. She has filed a lawsuit against the Davol subsidiary of C.R. Bard, Inc., the maker of the patch.

She is not alone. A disproportionate number of patients filed complaints about their experience with the extra large size of this patch. Inspectors at the U.S. Food and Drug Administration found that in several reports to the FDA, the company had understated the potentially severity of injuries and a possible death from the device. Since the device’s recall, the FDA has received reports of more than 80 injuries and other problems that may have been linked to it, including several deaths.

Advice for patients wearing a Kugel hernia patch: You may want to learn more about the patch and your options by contacting a lawyer. Here are two firms (neither of which I know) that say they might help:


1. Parker Waichman Alonso Mark LLP at 1-800-LAW-INFO

2. The Johnson Law Firm at 1-866-374-0338

(I don’t get any money for this.)

Forward this to your friends who have had hernia surgery.


Read another lawsuit story, or read the source article by Barry Meier in the March 16 New York Times, "History of Hernia Patch Raises Questions on Implant Recalls."

My advice will help you, but the rules prevent it: A healthcare access story

Sofia (the girlfriend/grandma ex-skier with the unbroken “broken hip”) was discharged to go home from the hospital, without an explanation of her pain or any resolution of it. (The hospital will, however, bill Medicare for her care. Thank you, Taxpayer, for paying it.)

At home, the physical therapist told Sofia that the right side of her pelvis had become displaced forward, and massaged and manipulated her hip, reducing the pain. The physical therapist told her that walking would help her heal, as long as it wasn’t painful to walk. But there was a catch: Medicare would only pay for the physical therapy if Sofia stayed at home for the three weeks of the therapy. If she left home, e.g., to walk, Medicare would not pay the bill, because, able to walk, she wouldn’t meet the Medicare criteria for physical therapy. So the only treatment that helped—the physical therapy—will not be reimbursed if she follows the healthcare provider’s advice—though the treatment that did not help—the hospital care—will be reimbursed.

Advice for patients in a Catch-22 like Sofia: Walk, and heal. If you see the Medicare police, walk faster.

Reader, Do you have a Catch-22 story about how the rules have prevented helpful treatment?

Paul Farbstein

My father, Paul Farbstein, succumbed last week at age 79 to Parkinson’s disease after a gallant, uncomplaining 15-year battle. He was content, and accomplished; he was loved, and loved his family. He found jobs for many people during the 30 years he ran an employment placement business. He served as the President of a Rotary Club chapter, working hard in Rotary International’s long fight to eradicate polio worldwide.

He was quite healthy for most of his life, but encountered some medical misadventures in his last few years. One of his stories (about “Raul”) appeared on this blog.

Hospice staff cared for him for the last two weeks of his life. Their care was greatly compassionate and respectful to him and his family members. His family and oldest friends were able to say good-bye and to get help in coming to terms with his loss. He received only the treatment that was necessary and appropriate, which is remarkably rare in our medical system.

Donations in his memory can be made to the American Parkinson’s Disease Association, for research.

Advice for those near the end of life: Hospice care can make a hard path far easier. In the Atlanta area, Hospice Atlanta (404-869-3000) has my highest recommendation.

Read Art Buchwald’s hospice story.

If hip ain’t broke, don’t fix it: A near miss diagnosis

Sofia (not her real name) is an active 83-year old girlfriend and grandmother of four, an ex-skiier from the days when young women didn’t ski. Back then, she had broken her leg on the ski slopes. Now, with no reason last Friday, she suddenly had developed excruciating pain while walking.

She called her doctor, who had her come in to see a colleague who was covering for him while he was out. The covering doctor admitted her immediately to the local community hospital in suburban Connecticut. There, based on her X-rays, a surgeon prepared to operate the next day on her hip fracture. The surgeon planned to install three screws in her right hip to stabilize it.

Sofia’s family prepared for a difficult operation and a lengthy and painful recuperation. Then, suddenly, the next day, they received a phone call: there was no hip fracture. Two of the three X-rays had found nothing, and the third had found a line suggesting a possible fracture. The surgeon had ordered an MRI, which clearly found no fracture. Sofia scooted out of there as fast as she could.

X-ray interpretation is very subjective. Radiologists will disagree on about a fifth of all Xray films, or more, according to Dr. Jerome Groopman on Wednesday on National Public Radio.

Advice: If an X-ray film is ambiguous, ask for a second opinion, or for some other kind of test, to corroborate it. And, Sofia adds, Don’t get sick on a weekend.

Read another misdiagnosis story.

I couldn’t make it without my friends: A wrong drug error

Sharon’s story (last name withheld by request):

I had been on Effexor for a good five years at different levels; I had been decreasing it for a long period of time, but had also been using free samples the doctor had given me, for years. They come in those packs that you push through, and I collected them from other people, so I was happy to have them for free.

When I ran out and the drug company stopped sending them, I had to get a prescription and go to the drug store for the first time in a lot of years. I took the script to Sam’s; they were great; they handled it. I had it filled and started taking them.

I started not feeling well pretty immediately, but I didn’t realize that. The next two days, I started not feeling well. My symptoms were nausea and dizziness; I was light headed, and extremely tired. I had to come home from work about 3:00 to lie down. A couple of days later, I called my doctor (not the one who’d prescribed the Effexor) and they fit me in and I went in that day, because I’m not usually sick. My friend Joan says I’m always zooming around, but saw that I wasn’t at all. I started having heart palpitations--that scared me.

I went to the doctor’s and first he was convinced I was pregnant! He wanted to do a pregnancy test! But I knew I wasn’t. I had an EKG, and they did a lung X-ray--all these tests! Everything checked out OK, and he basically told me to give it a few more days. It probably was Day 8 now, and I was laying on the couch feeling crappy and Joan came over, and we were talking about all my symptoms, and she asked me all these questions: Have you been eating anything different? Are you taking a new kind of vitamin? Have you changed pharmacies? She said she read an article in Newsweek that the pharmacies made mistakes all the time—she had just read it, and that’s how it started. I told her I didn’t change pharmacies, and she asked if any of my pills looked different, and I realized they did. But because I’d been getting free samples, I didn’t put it together –I was like an idiot--because a lot of times they do.

So the next day, I still took the pill, like an idiot, and I went to the doctor, and I asked him for a copy of the prescription, and I told him what I thought might’ve happened. The doctor pretty much knew when I told him. So I took the scrip and the 9 pills that I’d taken out of the 30-day prescription, and I took it to the pharmacy, and said, Is this what I am supposed to have here? They said they have a hard copy on their computer files—I didn’t know they could do that. And they looked at the script and the bottle, and went, “Woops! This is not what we filled”!

They immediately gave me another bottle of 30 of the right timed release ones. They told me that they were sorry, and they didn’t charge me for the new bottle.

The next day I got a phone call from the pharmacist that prescribed it, apologizing, and wanted to know how I was feeling. The same day, I got a call from an independent insurance agent of some kind, who said that by law they had to report on the error, and she asked me to tell the story of what happened as well.

Three days later, I got a call from the same woman, who said that she was able to make me a one-time settlement if I was prepared to accept it today. I said, “What settlement?!” And all this information came out of the blue for me. I told her I was NOT willing to make any kind of settlement, that I needed a couple of days to think.

She had made me an offer of $1,200.

I called my friend who is an attorney, and we talked strictly as friends—I wasn’t paying him anything. And he explained to me that this could be a huge lawsuit and the company was trying to avoid it, and that I needed to think about how I felt about all of this. I explained to him that I was never thinking about suing, and that I was not comfortable with the idea of getting a lot of money from them. My friend explained to me that I had a legitimate complaint and deserved to be compensated. So we talked about different options as far as my pain and suffering, how much time I missed from work, and all my doctors’ bills—I was concerned about that because I work for a nonprofit, for nothing, practically, and I was concerned about all the medical bills I had just created.

So we came up with a number that covered all my medical expenses and covered me missing a week of work--$2,200.

Now, I still feel that Sam’s has been the best pharmacy for me over the years. They’ve been great, before, and since. Now I always open the bottle of pills when I get there. Mistakes can happen anywhere. It’s a business, but it’s human beings filling the scripts. It’s scary, I tell everybody: Check your meds!

I had two advocate friends. My life is run by my friends. I couldn’t make it without my friends.

Advice: Get a friend like Joan and Sharon’s lawyer friend to advocate with you.

Read a story about another victim who chose not to sue .

I thought it was a regular dental procedure: An anesthesia error

When five-year old Diamond Brownridge broke her arm, doctors had no problem in sedating her. Then, when her mother brought her to the dentist last September to fill two cavities and cap her front teeth, her mother said, “They did tell me they were going to sedate her, but I thought it was a regular dental procedure.”

Improperly administered anesthesia led to her death.

The 35-pound girl had received two injections of diazepam or Valium within five minutes, followed by oral Valium, lidocaine, several other medications, and nitrous oxide. The Illinois Department of Professional Regulation said the dentist had failed to properly monitor her blood pressure, pulse and respiration during her treatment. The Cook County Medical Examiner’s office found that the anesthesia caused a lack of oxygen to her brain, causing her death.

Children often need drugs to reduce anxiety, relieve pain, or reduce movement during dental procedures and some medical tests, like MRIs. Children may unintentionally become too deeply sedated, and so must be monitored very carefully until they are fully awake. The American Academy of Pediatric Dentistry and the American Academy of Pediatrics have recently jointly issued guidelines (summarized here) for safe pediatric sedation. The guidelines make clear that the clinician must have advanced airway training, use a pulse oximeter to measure oxygen levels in the blood, and take other precautions, according to AAPD spokesperson Dr. Stephen Wilson.

Advice to parents whose children need sedation: Beforehand, ask your dentist or doctor if s/he follows the new guidelines. If not, consider whether it could happen to your jewel.

Read another anesthesia story, or read the sources: Judy Foreman in Monday’s Boston Globe, Christian Nordqvist in Medical News Today, and CBS2chicago.com.

He lost the first battle but he’s winning the war: An adverse drug reaction lawsuit

Earlier I reported on Frederick Humeston’s lawsuit against Merck over Vioxx. After losing the first lawsuit, new evidence emerged, and the ex-Marine won the first phase of his three-phase lawsuit. Yesterday a jury awarded him and his wife $20 million in damages, in part two.

Advice for victims: If other approaches don’t get you justice, find a good advocate, maybe a lawyer.

Read another lawsuit story.

Now they take pictures at Disneyland, not to Disneyland: Personal Health Record

Aaron Walbert is a teenager living in Colorado Springs, an hour and a half from his doctors. He has vacationed in northern Minnesota and in Disneyworld. He can use a computer like most members of his generation.

He has an exceptional past: in his fourth day of life, he suffered a stroke, and developed hydrocephalus. Since then, he has undergone numerous operations to drain the excess cerebrospinal fluid, via a shunt. While on vacation several years ago in northern Minnesota, he began complaining of headaches and nausea, making his mother worry that his shunt had malfunctioned. At the hospital in Duluth, two hours away, no one could retrieve his chart from his Colorado hospital. He had to drive 3.5 hours away to another hospital so a neurosurgeon could determine whether surgery was needed. Over time, his mother has realized there are many false alarms, because everything from the flu to a poor night’s sleep can mimic the failure of a shunt. Even so, she began to lug around the large, heavy envelopes of radiology films wherever they went, out of concern that the shunt could fail at any time.

But this hasn’t been necessary for the last two years. The Walberts acquired an electronic personal health record (PHR), so they could access his health records anywhere. If Aaron gets sick far from home, doctors at the nearest hospital can download his latest MRI scan for comparison. And they could have anything else in his medical record at their fingertips. That was helpful two years ago, when Aaron got sick at home. Mom took him to a local radiology office for a brain scan, and had it compared to the most recent scan, available online via the PHR. When the doctor realized the scan was unchanged, Mom could bring him home without worry, without making the long drive to his hospital.

Advice to rural families with complex medical needs: Get a Personal Health Record. Having your up-to-date medical information on hand anywhere can be a godsend.

Read a story of how a wife’s medical information on her husband saved him, or read Dr. Orly Avitzur’s story in Neurology Now.

Who's on films? What's on second?: An MRI Error

A member of our family--call him Javier--told me his story:

I noticed a bump on my arm, and saw a hand doctor for it, because it wasn't normal. He ordered both an X-ray and MRI. He also referred me to a specialist, who would read them for me.

I waited for the appointment. The day before, I called to confirm that the specialist had received the MRI films, and someone in the office had said Yes. The next day, I showed up for my 8:30 am appointment, and the receptionist asked me if I had the films. I said No, since I had called the day before and someone had told me the films had been received. I then waited a few hours.

I was finally taken into the room to see the doctor, and his assistant asked me if I had my films! Then two other people looked for them, and left. A supervisor then came in and asked me the same questions.

Finally the doctor came in with the film search party, and told me they did not have the films, and that he would prescribe me another MRI. He ordered another MRI, which I had about a week later. But I couldn't get an appointment with him for another two months--he was so busy!

By then, the bump was going away by itself. At the appointment, he said the MRI was OK. I was fine.

But the story wasn't over. He billed me for both sets of MRI films, and my insurance paid for both of them. Now the doctor's office is going after me to pay for the visit where nothing happened, except that the film search party spent a few hours looking for the films while I waited.

So now I have to spend time arguing about the bill! And all I got for it was two months of worrying that I had cancer, and a bump that wasn't treated--and I got to wait in his office, too--and the chance to talk, probably several times, with the doctor's office staff to straighten this out.

Read another story of misplaced diagnostic test results.

Her Internet research said it could help: Patient education

Susan Arazy has multiple sclerosis. In January, she emailed her physician, Dr. Moore, wanting his opinion on whether early intervention with Avonex would slow her disease's progression. Her Internet research said it could help.

During the appointment, her doctor read information on several web sites, confirming what Susan had found. He deemed it worth asking a specialist, and arranged an appointment with a neuro-opthalmologist.

Susan had educated herself and asked her doctor's opinion. Her doctor had considered it thoughtfully with her and promptly supplemented his own knowledge with the most up-to-date information.

Advice to patients: Educate yourself. And get a physician like Dr. Moore.

Read another MS story, or read another example from the Wall St. Journal source article.

He was told to find his own way, he testified: Access to care

Wearing a black eye patch, Sgt. John Daniel Shannon testified to a House committee, convened at Walter Reed Medical Center in Washington DC on March 5. He described how he’d been struck in the head by a bullet from an AK-47 in November 2004 near Ramadi, Iraq. The injury caused a traumatic brain injury and cost him his eye.

He was returned to the U.S., and was already moved out of the hospital within a week of his injury. Though he still was extremely disoriented, they handed him a map and told him to find his own way to his new residence on the hospital campus. There, he waited several weeks for someone to contact him and tell him how to get additional treatment. He eventually called people himself until he reached his case worker. Staff in the bureaucracy lost his paperwork several times, and each time the brain-injured soldier had to start over.

So do we!

Advice for patients with complex needs: If your case worker doesn’t contact you promptly, perhaps you should demand a caseworker who will.

Advice for citizens: Express your opinion to the Commander in Chief at 202-456-1414.


Read our related Patient Safety Quiz, or read Michael Luo’s article, “Soldiers Testify over Poor Care at Walter Reed,” in the NY Times.

No more “diagnose and adios” for “Laverne and Shirley” star: MS patient education

David Lander acted as Andrew “Squiggy” Squiggman in the 1970s sitcom “Laverene and Shirley.” He’s still laughing, even 23 years after being diagnosed with multiple sclerosis. In those days, there was nothing doctors could do about MS, so doctors’ treatment was “diagnose and adios.” Now, many treatments are available.

“My doctor had painted a fairly bleak picture of the disease, even going so far as to say I probably wouldn’t walk again,” he said. Now he walks slower—and is a scout for the Seattle Mariners baseball team—and for the handicap accessibility of ballparks.

Speaking to MS patients is one of his greatest joys. He adds, “There’s a great strength that we derive from each other. Support groups offer MS patients an invaluable resource.”

“Wherever the chips may fall, if I fall with them, I will do so gracefully, laughing.”

Advice to friends and families of patients with MS: Take ‘em out to the ballgame—but check first for the ballpark’s accessibility for handicapped people.

Read another story about a celebrity spokesperson , or read Linda Childers’ article, “Fall Down Laughing,” in Neurology Now’s Jan./Feb. issue.

27,000 lawsuits - Ambushed by Merck: An adverse drug reaction

Frederick (“Mike”) Humeston is a tough guy, an ex-Marine who won two Purple Heart medals in Vietnam. By 2001, at age 61, he had gained some weight, and had high blood pressure. He testified that he was a healthy outdoorsman before the heart attack. But since then, he no longer can hike and lead canoe trips as a wilderness guide. He took Vioxx to dull the pain in his left knee, which was damaged by shrapnel in Vietnam. He took 54 Vioxx pills in the two months before his heart attack and two pills within hours of the incident.

He lost his first lawsuit. Then he was granted a second trial because of new evidence that even short-term Vioxx use could increase cardiac risks. Merck had repeatedly insisted that Vioxx didn't increase cardiac risks until after 18 months of use. On Friday, a jury unanimously ruled that Merck had committed consumer fraud by misleading doctors and patients and by intentionally suppressing, concealing or omitting information about the risks of Vioxx, which was withdrawn from the market in September 2004.

Advice to victims: Sometimes you need to get a good lawyer. And take the least medicine you need.

Advice for the NY Times headlines writer: “Mixed Verdicts for Merck [one win, one loss]” is like saying, “Half of the Bridal Couple Shows Up for Wedding.” The newsworthy event is the guilty verdict, especially when 27,000 lawsuits have been filed against Merck over Vioxx. We expect big pharma companies will be found innocent of fraud. Or do we?

Read another lawsuit story. Or read the sources: Andrew Pollack’s NY Times story,or Linda Johnson's account, or Marc Kaufman’s Washington Post article in Nov. 2005.

Patient Safety Quiz: The Power of Telling our Stories

Q1.Which headline was on the front page of the New York Times this week:

A) Man Bites Dog
B) Israeli and Hamas Leaders Mark Broad Peace Pact with Joyful Group Hug
C) Large Hospital System Fires CEO over Patient Safety Problems


Yes, it was a toughie, but if you guessed C, you’re right. Bob Woodruff broadcast his story, and stories of other American men serving in Iraq, about brain injuries and the frequently inadequate treatment for them. Yesterday’s NY Times headline read, “Army Secretary Ousted in Furor on Hospital Care,” and the story noted it was “the second change of command in two days.”


Q2. Which national hospital system has both a unique and outstanding electronic medical record that integrates patients’ histories over inpatient and outpatient visits, AND a computerized physician order entry system with a dazzling set of alerts to protect patients against medication errors?

A: The Veterans Health Administration


Q3.In 1982, New York Yankees owner George Steinbrenner fired two managers, four pitching coaches, and two hitting instructors. Did it help?

A: No. They lost more games than they won.


Q4. Which hospital has made tremendous progress in patient safety since firing their CEO in the wake of the widely told story of a medication error that led a journalist’s death? Hint: The hospital’s exemplary patient advisory council is a focus of pending Massachusetts legislation.

A: Dana Farber Cancer Institute. Only time will tell whether these firings have effects more like those of Steinbrenner or the Dana Farber’s Board.


Woodruff's public airing of these men's powerful stories may make it possible to speed the return to good health of thousands of wounded veterans.

Advice: Your stories are powerful! Share them with us, and share our stories widely with your family, friends, and colleagues.

Read another story about a veteran’s care.

My dentist found 8 cavities: Fluoridation

In 1944, Dr. David Ast began a ten-year landmark case study in two New York towns about the effects of fluoridating a town’s water supply. His conclusion: fluoridation reduced cavities in children by 60 – 70%, without significantly changing the rates of cancer, birth defects, heart disease, or kidney disease. He then became a prominent advocate for fluoridating New York City’s water supply; fluoridation started there in 1965.

As a boy born in New York City in 1957, I still remember the time my dentist found 8 cavities during a single exam. Luckly, all but one were in baby teeth. Fluoridated water and toothpaste came just in time--no more cavities.

A great big pearly white smile for Dr. Ast’s memory! He died two weeks ago at age 104.

Advice: When you learn of solid research results which are supported by other studies, be a public health advocate. Share the new knowledge—it could put a great smile on your son’s face.

Source: Obituary by Jeremy Pearce in the NY Times, Feb. 23.

Seinfeld Star’s Advice to Families on Chronic Illness: Patient education

Karen Greenspan is the half-sister of Jason Alexander (George on Seinfeld). Fifteen years ago she was diagnosed with scleroderma, in which the person’s own immune system malfunctions and attacks the person’s body. He has helped her over the years in many ways.

What I was doing initially was educating myself at the same time that I was inviting other people to get educated, and I was taking an organization that was having trouble being seen (the Scleroderma Foundation) and just throwing a little media attention on it.

One way to help loved ones with a chronic disease is to be as educated as you can…I think the hardest thing for people with chronic illness is this sense that they are somehow separated from everybody else that’s healthy—either by the fact that they can’t do stuff, or they just don’t feel well, or they think, ‘I’m sick; they’re healthy,’ or ‘Maybe I’m going to have a shortened life, and the quality of my life isn’t as good’—whatever it may be. I think the thing that you do is include them as honestly and realistically in life as you can.

Karen and I don’t pull punches. We say, ‘You’re a sick girl; you’ve got problems, and so let’s not beat around the bush with it. What’s going on? Where are you at any given time? What can you do? What can’t you do? What’s realistic? What isn’t?’

The trick is to be keep finding stuff to be happy about and laugh about and something you want to do and push forward.”

Read the source article in the Fall 2005 issue of My Family Doctor: The Magazine That Makes Housecalls, where it's available for purchase.

You are my best patient: Partnering with your doctor

From Steve Schalchlin's online diary, Living in the Bonus Round:

[W]hen we got home, there was a message from the doctor's office with my blood test results. Dr. Ruchi came on the line and literally said, "Are you sitting down?"
I sat down. She said, "Your triglyceride level is..."

I held my breath.

"...171."

I screamed, "ARE YOU SERIOUS???"

She said, "You are my best patient. It's amazing."

171. I was hoping for less than 400. She continued, "And this has brought your cholesterol level down to 120."

I'm glad I was sitting down. Passing up all that KFC was working. It's driving Jimmy crazy that the only thing he can cook for me anymore is chicken.

Now, the last time I got my levels this low, I celebrated by ordering a huge pizza. Then I got lazy. But not this time.

I realize that I can't afford to ever stop training.

Advice to patients: Never stop training! Do the hard work, if that's what it takes, to be their best patient. And if you see any chicken-free recipes that will help Steve keep his cholesterol down, send 'em in, to keep Jimmy sane... ;-)

Not only to linebackers: Undiagnosed brain injuries

Last night, ABC broadcast the moving story of journalist Bob Woodruff’s miraculous recovery from a severe head injury from an improvised explosive device in Iraq. Woodruff’s program warned that many soldiers have invisible, undiagnosed head injuries due to the concussions they suffer in explosions.

This tragic war is disturbing enough, as are the heart-breaking images of our wounded soldiers. Adding insult to the injury is the frequent failure to diagnose their head injuries, and once diagnosed, the failure to provide adequate treatment.

Mr. Woodruff illustrates quite graphically that some veterans are sent home to recuperate in smaller cities that do not have veterans’ hospitals equipped to handle the growing number of those returning with severe traumatic injuries. He interviews a young soldier who is slowly but steadily recovering at a state-of-the-art veterans’ polytrauma rehabilitation center in Tampa, Fla., then checks in on him weeks later in his hometown in Texas, where he has noticeably regressed.

Others are not even diagnosed. One solider in the story mentioned the frequent memory lapses he attributes to undiagnosed head injuries in Iraq.
Researchers screening returning soldiers and Marines at four military bases found that about 20% of troops in front-line infantry units had suffered such injuries.

"This blast group is going to be potentially huge," says Angela Drake, a neuropsychologist with the Defense and Veterans Brain Injury Center, a research arm of the Department of Veterans Affairs and the Pentagon. "We're looking at thousands of potential patients." Military doctors describe brain injuries as a signature wound of these wars. That's because advances in body armor save soldiers who might have died in previous conflicts, but blast waves from roadside bombs can cause brain damage. U.S. troops in Iraq are exposed to hundreds of bombings each month. "We've seen patients who have had three deployments and have had some (head) injury on every single one," Drake says.

The damage from multiple concussions can be irreversible. "Repeated concussions can be quite serious and even lethal," says Air Force Maj. Gerald Grant, a neurosurgeon who treated troops in Iraq.

Eight months ago, Pentagon health official Michael Kilpatrick said “in a few months,” combat medics could start using a simple mental exam to show evidence of concussions. The time is now.

Recent news reports describe the many concussions suffered by Tedy Johnson, a former linebacker with the New England Patriots. Undiagnosed brain injuries occur to the rich and famous, and also to our young soldiers who get very little respect, pay and fame. Not just to linebackers.

Read another of our stories about veterans, or read the source articles by Alessandra Stanley in the New York Times yesterday and by Gregg Zoroya in USA Today.

Warning on antidepressant and antipsychotic drugs: Drug-drug interaction

A 45-year old man from Boston had been taking four drugs for depression when he had ankle surgery in December. When the anesthetic wore off, he was given Fentanyl in the recovery room. He suddenly developed tremors and violent shaking, and started cracking his teeth, according to his wife. Moved to the Intensive Care Unit, he thrashed and flailed, oblivious to those around him, and had to be restrained physically. Two weeks later, he was still in intensive care, very confused, well after his drugs had been discontinued. The same “serotonin syndrome” had caused the death of Libby Zion in 1984.

At especially high risk of such serotonin poisoning are patients on combinations of antidepressant drugs and antipsychotic drugs that are sometimes prescribed to treat resistant depression. It can result from a combination of an SSRI (Selective Serotonin Reuptake Inhibitor, like Zoloft, Prozac, or Paxil) or an MAOI (Monoamine Oxidase Inhibitor, like Marplan, Nardil, and Eldepryl, and another serotonin-raising substance.

Advice to patients taking these drugs: Ask your pharmacist and doctor about possible drug-drug interactions.

Read another of
our stories of a drug-drug interaction, or the blog post of Dr. R. W. Donnell, Jane Brody’s story in today’s NY Times, “A Mix of Medicines that can be Lethal,” and the review article in the New England Journal of Medicine.

Hospitals are testing patients’ patience on infection rates

I salute CEO Paul Levy’s courage and visionary leadership in posting Beth Israel Deaconess Medical Center’s infection rates on his blog. Every patient wants hospitals to compete on quality, not just cost—which hospitals fear, and block.

Critics who cite measurement problems in comparing different hospitals' infection rates are both correct and highly distracting. Legislation filed by Sen. Moore and Rep. Denise Provost and 45 co-sponsors, and backed by even more legislators, would require that all Massachusetts hospitals publicly report their infection rates, on a common yardstick. We’ve run out of patience, as the legislators know.

An executive in a nearby large hospital system contemptuously commented about his competitor's blog post, “What’s a blog?!” We patients know serious errors occur daily, and through blogs like PatientSafetyBlog.com we are getting smarter about where and how to get the best care. Hospital leaders might want to read the stories of medical errors that we’re learning and telling each other.

Read Liz Kowalczyk's column in the Feb. 23 Boston Globe...

He probably saved my life: A patient advocate

Retired Probate Court Judge Sumner Kaplan was hospitalized for life-threatening colon cancer. A long-time retiree friend—a former physician named Jonathan Fine—visited and even stayed with him in the hospital, sleeping on the floor. Dr. Fine (yes, that’s his real name) clarified the explanations of Sumner’s doctors, fetched ice water, helped Sumner walk the halls, eased his anxieties about dying, and pressed for a CT scan that uncovered an internal bleed (hemorrhage) that could have killed Sumner.

“He probably saved my life…He gave me not only a feeling of comfort, but of hope,” judged Kaplan.

Advice: Get an advocate for your hospital stay.

Read another story of an advocate friend, or read the article by Alice Dembner in today’s Boston Globe.

Cheatum was cheated: A nursing home lawsuit

This week the family of a Tennessee man won $4 million in a lawsuit against the nursing home chain that had cared for him. Cheatum Myers suffered numerous falls during his nursing home stay, one of which broke his hip. He didn’t get treatment for the injury for a week.

 And an infection around where Myers’ catheter was located led to a high fever complicated by pneumonia. He had one bedsore all the way to the bone on his heel.

 Mr. Myers died in 2005, and the lawsuit claimed it was because of the lack of care.

Advice to the adult children of frail elders: Check the quality ratings of nursing homes with your state’s department of public health.

Read another lawsuit story, or read the source story in the Daily News Journal.

Her doctor’s survey led to a discussion: Partnering with your doctor

Our problems can be complicated, but doctors’ appointments are short. Often important complaints don’t even get mentioned. As a solution, some doctors use a ten-minute web survey, “How’s Your Health,” developed by Dr. John Wasson of Dartmouth Medical School. The survey leads many patients to indicate, up-front, signs of trouble that they often wouldn’t discuss during the short face-to-face visit. The answers form a snapshot that gives the doctor a head start before the patient sets foot in the doctor’s office.

About a year ago, Susan Arazy filled out a survey, and scheduled an appointment for a sore throat. Her primary care doctor saw on her latest health snapshot from the survey that she wasn’t following a healthy diet or exercising enough. This was especially important because of her diabetes. The snapshot triggered a discussion with her doctor of her lifestyle and habits, prompting her to join Weight Watchers and lose 35 pounds.

Advice for patients looking for a new primary care provider: Ask whether the doctor uses the survey or other electronic methods so that the limited appointment time with you will be most helpful to you.

Read about another diabetes patient story, or read Gautam Naik’s article in today’s Wall Street Journal.

Warning on ADHD Drugs: Adverse drug reactions

Yesterday, U.S. government health officials ordered the makers of drugs for Attention Deficit Disorder (ADHD) to write Patient Medication Guides to alert patients about the drugs’ adverse effects on patients’ hearts and brains. ADHD affects 5% of school-age children and almost as many adults, and use of these drugs by adults has more than doubled since 2000. The drugs include Adderall, Concerta, Daytrana, Desoxyn, Dexedrine, Focalin, Metadate CD, Methylin, Ritalin, and Strattera.

Advice to people taking drugs for ADHD: Read the FDA press release and draft medication guides. Work with your physician to develop a treatment plan that includes a careful health history and evaluation of current status, particularly for cardiovascular and psychiatric problems (including assessment for a family history of such problems).

Maybe an early warning about a man's heart disease: Missed diagnoses

Half the people who die of heart disease die suddenly, undiagnosed. Surprisingly, impotence may be an early warning sign of a man’s undiagnosed heart disease. Some experts say what we are seeing in all the use of Viagra, Cialis, etc., is not so much an impotence epidemic as an explosion in the number of men suffering from other conditions - cardiac disease, diabetes, and metabolic syndrome - which include impotence as one of their symptoms. A recent study by Prof. Michael Kirby at the University of Hertfordshire found a strong link between impotence and heart disease. Erectile dysfunction can be a valuable warning sign, giving a sufferer time to make life-saving changes, before he has a heart attack.

Advice to men about impotence: Ask your doctor about this. The ocean is full of fish, and the doctor’s advice may give you extra years to enjoy using your rod and reel.

Read about how women can prevent heart disease, or read the source story by Victoria Lambert.

Women, Keep your heart open, continued: Preventing heart disease

News you can use for women over 65: Ask your doctor whether taking a baby aspirin each day would reduce your risk of having a stroke and heart attack. That’s the latest guideline of the American Heart Association, published yesterday and backed by numerous studies.

An aspirin a day might keep the heart surgeon away…and if not, read the blog story on the surgical solution of stenting open narrowed heart arteries.

Jay Leno’s Advice

"In an interview with USA Today, Senator Barack Obama says the shortness of his political resume is his greatest strength. Politics is the only business where people brag about how little experience they have. Can you imagine guys saying to you: “Look, I’ve never been to medical school, I’ve never even watched 'E.R.,' but if you just let me try and do this brain operation I’ll do the best job I can.”?"

(Quoted in the New York Times yesterday.)

They dismissed her concerns: A misdiagnosis story

A ten-year-old disabled girl has died in the hospital amid claims that doctors misdiagnosed her condition.

Ayesha Wyatt died in Alder Hey Children's Hospital in Liverpool in the early hours of Tuesday morning with her mother at her bedside.

Ayesha’s mother claims that doctors dismissed her concerns that a plastic shunt removing harmful fluids from her daughter's brain had become blocked when the child's neck swelled up last month.

Advice to parents: You know your child better than anyone; you are their primary care provider. Keep the courage of your convictions when you see medical professionals disregard a key sign about your child. Go to a higher authority in the hospital if you think the doctors and nurses are making a serious mistake.

Read Darren Devine’s article, or read a story of a family advocate with a happy ending.

Her care in the nursing home was better: A hip story

Here's a 4-minute video of an NBC Special Report about a hospital's care of an elderly Connecticut woman, initially hospitalized for a broken hip. (The video may take a few minutes to load.)

Advice to sons & daughters of elderly parents: Get an advocate when your elderly parent has to enter the hospital. An advocate can detect this in time to save your mother or father.

Keep an open heart! –Don’t stint on your post-stent meds, continued: Preventing heart disease

If you have a friend who has had a stent slid into a heart artery to keep it open, pass this on to them. The newest consensus of medical opinion is for people with drug-eluting (emitting) stents to take daily doses of aspirin and Plavix for a year to reduce the risk of blood clotting in the artery. The recommendation appears in the prestigious New England Journal of Medicine last week, and updates January’s blog post.

Advice: Have your friend discuss this with their doctor.

Read Barnaby Feder’s article in the NY Times, Feb. 13, page C3.

But the magazine said he was a Super Doctor: An overdose lawsuit

The cancer doctor’s web site touts the fact that he was named in Texas Monthly as a so-called “Super Doctor" in December, 2005. But earlier that year he had lost the biggest malpractice suit in the county’s history--$600 million!--and a month later, another patient died from a chemo overdose under his care.

How does a physician become a Texas Monthly “Super Doctor?” Or for that matter, a Best Doctor for D Magazine?

“Super Doctors” is actually the trademark of Minneapolis-based Key Professional Media, which has made a business of publishing “Super” lists. Key Media is secretive about how its “Super Doctors” are chosen, and would not disclose how many doctors vote, saying that number is “proprietary.” Every voter can vote as many as ten times. Lorelei Calvert of Texas Monthly says Key basically buys a section of the magazine, labels it a “special advertising section” and sells the advertising space to doctors.

D Magazine asks “Which Dallas Doctors would you trust to send your loved ones to for medical care?” Rogers says the D survey is announced to hospital PR staffs before it is mailed to doctors. This allows them to stump for votes among their own staffs. Each surveyed doctor could cast as many as 117 votes over 39 different specialties. D says it got about 25,000 responses from 1,014 doctors, and selected 640 people as “Best Doctors.” Doctors are offered the chance to buy an ad in D Magazine to “maximize their exposure” when they’re notified they’ve been chosen as a “Best Doctor.” It is the best selling issue of the year.

Advice on finding a super doctor: Start by checking the profile yourself, if you can. In Massachusetts, you should first look them up in the Board of Registration in Medicine’s web site.

Read the article by Byron Harris.

“The biggest mistake of my life”: A gastric bypass surgery lawsuit

He now suffers great pain while standing on the sidelines, coaching football—but he was at death’s door, and he’s alive—and in court, suing his surgeons. His 350-pound bulk had hurt his chances of becoming a head coach—and risked an early death. So, after talking with doctors at a Harvard teaching hospital, Charlie Weis, the former offensive coach for the New England Patriots football team, agreed to gastric bypass surgery.

The surgical staples that sectioned off a small part of his stomach had not been tight enough to prevent leaks, and internal bleeding was filling his abdomen and compressing his lungs. It took his doctors and nurses almost two days to discover the bleeding. “He spent days at death’s door,” according to his lawyer, and spent three weeks in the hospital. He has suffered permanent nerve damage to his right foot that makes it difficult to walk and stand. Weis calls the surgery “the biggest mistake of my life.”

Advice: Surgery is inherently dangerous; keep that in mind when considering optional surgery. Find out your alternatives by getting a second opinion—from a doctor who is not a surgeon.

Read about another gastric bypass patient, or read Scott Allen’s article in today’s Boston Globe.

Rx’s for Doctors

Internists: Good News on Cancer described the recent reductions in cancer rates, especially because of colorectal screening. As you know, patients approaching age 50 have several options for colorectal screening.

Advice for internists who use paper charts: Have the receptionist identify each morning which of the day’s patients are nearing age 50. Have them place a PostIt note with a picture of a colon or pair of buttocks onto the front of the chart. That will give you a memorable, cheap, and confidential reminder to discuss options for colorectal screening with that patient, and you’ll start the discussion with a smile.


Oncologists: Now A Model Patient describes a cancer patient’s non-compliance with an outpatient oral chemotherapy order. It draws on this month’s article in the British Medical Journal by Dr. Saul Weingart et al. They found that two-thirds of the cancer centers in the U.S. write chemotherapy orders without writing the patient’s body surface area.

Advice for oncologists: If you hand-write oral chemo orders, make a special pre-printed form that has a space explicitly for the body surface area. That will prompt you to record it, giving the pharmacist a convenient way to verify that he or she is not dispensing an overdose.

Oncologists: Weingart’s survey found that “few” cancer centers get patients’ written informed consent for off-protocol oral chemotherapy drugs. This may well expose you to a risk of a lawsuit, and foregoes an opportunity to learn and honor the patient’s wishes.

Advice for oncologists: Have patients sign a consent form for off-protocol prescriptions.


Family Medicine physicians: Lucio Satar’s parents didn’t immunize him against the flu, and Lucio developed pneumonia, with complications, and died.

Advice: Please suggest to the families you see in the next few weeks that they get vaccinated.

Overdoses – the Numbers

Unintentional fatal drug overdoses in the United States nearly doubled from 1999 to 2004, and are now the nation's second-leading cause of accidental death, behind automobile crashes, the Centers for Disease Control and Prevention reported recently.
Nearly 20,000 people died from accidental drug overdoses in 2004, according to death certificates. CDC researchers believe sedatives and prescription painkillers such as Vicodin and OxyContin were the chief cause of the increase.

"There is a misperception that because a drug is a prescription medicine, it's safe to use for non-medical reasons. Clearly that is not true," said Dr. Anne Marie McKenzie-Brown, a pain medicine expert at Atlanta's Emory Crawford Long Hospital.

Advice: When you’re done with your Vicodin or OxyContin prescription, toss them down the garbage disposal; you can get another prescription if and when you need it.

Read Mike Stobbe’s full newspaper article.

Parkinson’s Treatment - Off and On: A medication error

Raul, a very nice elderly man who has had Parkinson’s Disease for 15 years, had frozen in place, seemingly awake but unresponsive, for more than an hour. Such on/off states among Parkinson’s patients are quite frightening to spouses when they occur. They seem to occur when the patient’s brain lacks Dopamine, a chemical that is provided by Sinemet. Alarmed, his wife called an ambulance, which took Raul to a large, well-known medical center. He arrived at noon. Later that afternoon, his wife gave his Sinemet—the mainstay of his treatment for all these years—to the E.R. nurse, with instructions that his next pill was due at 11 pm.

Raul was finally admitted to a hospital bed on the Surgery unit at 9 pm, because no bed in an appropriate unit was available. When Raul’s adult son called Raul’s nurse at 11:40 pm to verify the nurse had indeed given him the Sinemet, the nurse said another nurse was getting it. In other words, the attending physician had to write an order for the same medicine, hopefully in the same dose, with a similar timed release, and the hospital Pharmacy would dispense it—but this had not been done, and the dose was already 40 minutes late. Without their Sinemet, patients with advanced Parkinson’s often have extreme, uncontrollable tremors affecting their whole arms and legs, as viewers of Michael J. Fox’s political advertisement in last year’s Senatorial election in Missouri saw. The nurse mentioned that Raul had been quite “restless.” As my teenager says, Duh!

The hospital’s delay in providing the Sinemet had both caused this upsetting and uncomfortable set of tremors, AND made a recurrence of the on/off state even more likely—and that was the very cause that brought him to the hospital for treatment! Excuse my cynicism, but I doubt that the hospital will withhold their bill, or delay in sending it. Raul’s Medicare should cover the bill, so my thanks to you, Reader, the American taxpayer, for paying for his care

Advice to patient advocates: If a hospital patient depends on the meds he has brought from home, call to ensure that nurses have given them to him on time.

I Confess! Now Tell the World: Medication error reporting

Makers of electronic incident reporting systems tout the efficiency of the electronic reporting of medical errors. Yes, paper can be inefficient--that's part of the ugly beauty of it. Nurses and doctors already are reluctant to formally report their errors, often with good reason, and currently do not report the vast majority of medical errors. How many of them would suddenly choose to report their tragic mistakes electronically, when that becomes possible?!

A Celebrity Mom--A Dangerous Mix: Anna Nicole Smith

Anna Nicole Smith, may she rest in peace, bore a son Dan in 1986. Dan Smith had died suddenly in the Bahamas in September, while visiting his mother and her new baby girl, Dannielynn. A medical examiner recently determined that Dan's death was due to an interaction of methadone and anti-depressants.

Advice to patients on several drugs: Check this web site by ExpressScripts to learn if your medicines have potentially dangerous drug-drug interactions.

Read another drug interaction story, or read today's NY Times article by Abby Goodnough and Margalit Fox.

Now, a Model Patient: Partnering with your doctor

Velda Model had had surgery—twice—to remove a tumor from her breast. Then she endured chemotherapy that made her fingers and toes numb, and radiation that made her tired all the time. She was given Aromasin pills to prevent the cancer from coming back, but they made her body ache, and her heart race. So she stopped taking them, saying “I can’t live like this.” Her cancer doctor (an oncologist) eventually convinced her that the hormone’s benefits outweighed the discomfort.

Now she contacts the doctor’s office when she experiences severe side effects, allowing the doctor to discuss alternatives. She has been able to reduce the flu-like symptoms of the hormone treatment by taking the pills after dinner rather than before dinner.

That partnership between the patient and physician is our goal. In her case, that’s especially important, because women with hormone-responsive early breast cancer who do not take five years of hormone therapy pills increase their risk of recurrence by 50%.

Advice to patients with side effects from drugs: Tell your doctor, and explore alternatives with him or her.

Read Sunday’s Boston Globe article by Scott Allen, or the full study by my buddy Dr. Saul Weingart et al in the British Medical Journal.

2 news shows on patient safety

1. The CBS Evening News with Katie Couric will feature a segment about health care quality, with a focus on Don Berwick, the Institute for Healthcare Improvement, and IHI's 5 Million Lives Campaign. The program also touches specifically on infection reduction efforts at Beth Israel Medical Center in New York City, led by BIMC’s Director of Infection Control, Dr. Brian Koll. The segment airs Tuesday, February 6th at 6:30 PM Eastern Time.

2. The CBS Early Show is doing a segment on disclosure and apology on Wednesday morning, February 7th. Linda Kenney and Dr. Rick Van Pelt of
Medically Induced Trauma Support Services (MITSS) were interviewed on Friday, but I don’t know what the final piece will look like. I believe that the show runs on Channel 4 from 7 to 9 in the Boston area; be sure to check your local listings.


Thanks to James Madden and IHI for spotting this.

Nobody was there to assist them: Dialysis errors

The chief medical examiner of Maryland has identified 24 kidney dialysis patients who bled to death, usually at home alone. And the Mid-Atlantic Renal Coalition, which oversees kidney programs in three states and the District of Columbia, knows of even more cases.

In dialysis, a life-saving treatment for kidney disease, a patient's blood is cycled through a machine that removes impurities and waste products. In most cases, doctors tap a vein in the arm or leg, creating a "vascular access site" or portal that can be used for years. Most of the people died after their access sites weakened from repeated use and finally leaked.

"Most of these people seemed to be alone at the time the bleeding occurred," the Medical Examiner said in an interview. "Nobody was there to assist them."

Dr. Jeffrey Fink, former chairman of the Maryland Kidney Commission, said he has never had a patient bleed to death, though one recently woke up in time to get help. "The patient had a hemorrhage and happened to wake up wet," he said. "Everybody I talked to has a few cases where this has happened."

Advice to dialysis patients: Get a friend or family member to check on you during dialysis, if possible. And get educational sessions about the proper care of your access sites and the signs of trouble.

Read another kidney story, or see Jonathan Bor’s article in the Baltimore Sun. Thanks to Helen Haskell for spotting this.

Lucio Satar: A flu vaccine story

Lucio Satar, a healthy eight-year-old boy in Minnesota, began feeling sick with the flu on Jan. 24. He died Wednesday of pneumonia, a complication from the flu.

Across the U.S., about 100 children die every year from flu complications, according to Patsy Stinchfield, a pediatric nurse practitioner who leads the Minnesota Immunization Practices Advisory Committee.

Advice to parents: Please have your families vaccinated against the flu.

Read the story in the Lacrosse Tribune.

Just kids having fun?: Wrong drug errors

A month ago, in a blog post here, I advised parents to discard unused meds to keep teenagers safe. Here’s a news story about middle school students in Texas that shows why that’s important.

It turned out to be a few dozen: A misdiagnosis

Dr. H was working in the emergency room of a hospital on a Navajo reservation. Dozens of people had recently come to the hospital suffering from viral pneumonia. Blanche Begaye (a pseudonym), a Navajo woman in her sixties, came to the emergency room because she was having trouble breathing. She is a compact woman with long gray hair, worn in a bun. She told the doctor that she had begun to feel unwell a few days earlier. Thinking she had a bad cold, she had drunk orange juice and tea, and taken a few aspirin. Now her symptoms had worsened. She now had a slight fever, and was breathing at almost twice the normal rate. Her lungs sounded clear. A chest X-ray and a lab test of her white blood cell count made the flu or pneumonia unlikely.

However, her blood had become slightly acidic, which can occur in the case of a major infection. The doctor told Blanche that he thought she had “subclinical pneumonia”—an early stage of the infection, as the virus had not yet affected her lungs in a way that would show up on the chest X-ray. He ordered her to be admitted to the hospital.

A few minutes later, another doctor discovered that Blanche actually had aspirin poisoning. She was an absolutely classic case—the rapid breathing, the shift in her blood electrolytes.

Dr. H. had misdiagnosed her because the widespread viral pneumonia he had been seeing was uppermost in his mind. Rather than try to integrate all the information he had about her illness, he had focused on the symptoms that she shared with other patients he had seen: her fever, her rapid breathing, and the acidity of her blood. He dismissed the data that contradicted his diagnosis.

When he had asked whether she had taken any medication, including over-the-counter drugs, she had replied, “A few aspirin.” Dr. H. explained, “I didn’t define with her what ‘a few’ meant.” It turned out to be several dozen.

Advice for patients and advocates: Prepare a summary of your symptoms for the doctor, and be specific. If Blanche had specified the number of aspirin she had taken, she would have made it much easier for the doctor to diagnose. The doctor is on your team; treat him that way, and help him do right by you.

Read another story of a preventable adverse reaction, or read Dr. Groopman’s article in the New Yorker.