Psst, Got antriretrovirals?: A wrong patient & compliance error story

For years, "Jerry" bounced in and of various jails for burglary, theft and armed robbery. He tested HIV-positive 10 years ago, apparently from having shared an HIV user’s needle. Later, while while nodding off on heroin, he stumbled in a subway platform, and lost most of his front teeth. Still, he has a wide, boyish smile.

He would use his New York State Medicaid card to buy prescriptions worth hundreds of dollars, then turn around and sell them on the street for as little as $20. "You’d take it, out of desperation," he says.

These days, he’s clean, and not desperate for cash, so he’s unloading his painkillers and the Marinol his doctor prescribes to help his appetite. When he finally finds the "non-control man”"who buys prescription ("non-controlled" substance) drugs, Jerry nets $80. The non-control man can sell them for huge profits.

Advice to HIV patients: Only ask for the meds you need. For the others, don’t ask, don’t sell.

Advice for Medicaid program managers: Look into possible fraud by tracking the prescription patterns of habitual criminals who are HIV-positive.

Read a story about access to treatment by a poor family, or Kai Wright’s source article in the May/June issue of Mother Jones.

If, if, if: A lab error story

Claire Packer, a 49-year old Englishwoman, had had anorexia for almost half her life. The eating disorder, related to an obsessive fear of gaining weight, may have weakened her bones (osteoporosis). When she fell down the steps in her garden in summer 2005, she fractured her thigh bone (femur). An earlier operation to put metalwork in her leg had failed, so surgery was needed again on July 14. After her surgery, Ms. Packer became ill with diarrhea. But a stool sample taken on July 21 was not tested until five days later, despite requests for test results made by medical staff on July 22. Although it would have been best practice for someone in Ms. Packer's medical condition to have been attended by a member of the physician's team daily, this did not happen from July 23 to 27.

An opportunity was lost to begin treatment for what turned out to be a serious infection with the superbug Clostridium difficile.

She died on July 31, 2005. The causes of death were specified as E-Coli endotoxin (septic) shock, Clostridial toxin antibiotic-related digestive disease (colitis), and malnutrition as a result of her anorexia.

Now, almost two years later, the deputy coroner has returned his verdict, on April 11: neglect contributed to her death. Her mother commented, "If the doctors had made the effort to go and see her, if they had recognized her symptoms, if they had requested and chased her test results, she would probably be alive today."

Advice to hospitalized patients and advocates: Ensure lab results arrive and are interpreted and heeded promptly.

Read another of our lab error stories, or Miriam Craig’s source story.

Fame didn’t get her better treatment: The Nanny’s misdiagnosed cancer

She went to gynecologists, an internist, a hematologist (blood specialist), an oncologist/breast specialist, a vascular (vein and artery) specialist, and a neurologist (brain specialist) before discovering the cause of her bleeding, cramping, and painful sex to be early-stage uterine cancer. She refused radiation, but underwent surgery. She claims that fame didn’t get her better treatment, though it may have gotten more attention for Fran Drescher, star of the TV show “The Nanny,” and author of Enter Whining and now, Cancer Schmancer.

Advice to the rich, beautiful and famous: Find a doctor who sees your internal beauty—and sees it clearly.

Read another of our misdiagnosis stories, or the source.

A friendly guy, but a bit rushed: A wrong patient error

I decided to try out my husband's doctor a few weeks back, as we're trying to consolidate some things. The doctor came in — a friendly guy, though a bit rushed — and ran through my chart. "I see you're not a smoker."

I agreed. Then he said, "I see you're a bit of a drinker, social drinker, huh?"

"No, I don't drink," I told him. I must have gotten sloppy on the patient questionnaire and somehow marked a "yes" when I should have marked a "no" when they asked about drinking is what I thought. It couldn't have been the doctor's mistake. It had to be mine.

So I asked him to change that on the form because I had it wrong. It wasn't until after I left the office and was talking with my husband that I realized I wasn't the one who had it wrong. Apparently after the nurse called me back, another nurse came looking for me. My husband, who waited for me in the lobby, told them they already had me back there. At which time the person next to him joked, "They've lost her!"

Turns out the nurse had pulled the wrong chart. The doctor thought he was seeing someone else. It was an entirely different doctor than I was scheduled to see — a partner, I guess. And since I was a new patient, I had no idea what the doctor I was supposed to see looked like, so I didn't realize the wrong man was seeing me. And he didn't realize I was the wrong patient he was seeing.

Fortunately, my case turned out OK. The doctor told me I had an upper respiratory and ear infection and wrote me a prescription. But I just wonder how often does something like that happen?

I called the doctor's office later to inquire as to what happened and they referred me to the nurse, who apologized and said it was her mistake.

Advice: Ask to look at your chart—it says yours, right on the label--or at least, it should….

Read another of our wrong patient stories, or the Shreveport Times’ source story

A Patient Advocate in the First Family?

We probably have the most unusual field of potential first families ever. A potential candidate, Fred Thompson, just announced he is in remission from lymphoma. Both John McCain and Rudy Giuliani are cancer survivors. Joseph Biden suffered a near-fatal brain aneurysm. Four potential first spouses have or have had serious medical conditions -- Cindy McCain had a stroke (as well as an addiction to drugs), Bill Clinton had bypass surgery, Ann Romney has multiple sclerosis, and Elizabeth Edwards has cancer.

These diseases give family members much painfully learned experience as patient advocates. It is likely that the next President and First Lady or First Man will know, first-hand, of the needs of patient advocates. And the personal health of at least one of them is likely to become an issue during the campaign.

If a candidate has a prepared position on patient safety when that person’s health crisis hits the media, the candidate can express genuine sympathy for their adversary’s situation, along with a thoughtful, cost-effective solution to an issue that both will last through many news cycles and affect millions of voters. Who knows? Long a motherhood and apple pie issue, patient safety legislation might become a reality in the next Administration.

Advice for patient advocates: Tell the issues experts in the presidential campaigns that they should prepare position papers now that show their candidates favor patient safety legislation.

Read another of our legislative stories, or blogger Sherry Greenberg’s source story.

Now his neighbors’ parents are Crusaders too: An undiagnosed cancer cluster

Randy Zook was an all-American offensive lineman, #72 on the Crusaders. Eight seasons of football at Indian Valley High School and Susquehanna University had made pain management a way of life. Ice packs. Tape wraps. Ultrasounds.

He had a bad back. And he did not truly acknowledge how much pain he had experienced until his university football career was over. A month after graduation, he had back surgery. It turned out, though, that Zook's pain probably had another cause -- aggressive colon cancer that had been spreading inside him, undiagnosed.

He died at 23, in March 2002.

Why did such a young man get colon cancer, in such an aggressive form?

And Jennifer Tietgen, 27. Brian Forgione, 24. And Patrick Kadel, 28.

All had died in a single four-month period of rapidly spreading cancers. All less than six years after they left that place by the stream in Selinsgrove, Pennsylvania. It seemed like too much for coincidence. To Patrick’s mother, Linda Kadel, it seemed like a red flag. What was going on in Selinsgrove, near that tiny stream?

She started to ask questions. Linda sent dozens, then hundreds, of e-mails to alumni, asking health questions. She showed her list to others, hiding the identities of sick people by using initials. Word of her research spread. Email, she learned, is powerful. She learned of other young Susquehanna alumni—ultimately 60 of them--who had cancer.

She looked around the tiny stream in Selinsgrove. Near one bank, not far from "the warehouse" where students lived, amid the vacant, run-down remains of the mill, Linda said she saw barrels that appeared to contain industrial waste. And there was a large, dingy storage shed with "Danger! Chemicals" scrawled on its sides. Above the words, a hand-rendered skull and crossbones.

She has written to state, county and local politicians and scientists. To date, no formal investigation has occurred, though the university has posted recent clean environmental test results on its website.

Debbie Magnotta, like Linda Kadel, wants answers: her son Vince Magnotta Jr., died at 20.

"I think," she told her husband, "it is up to us to do something."

Advice: If you suspect a cancer cluster, urge your state public health department and the Centers for Disease Control to investigate.

Read another story with a mother as advocate, or read Ford Turner’s source story.

A Smart Bacteria: A Misdiagnosis Error

In 1992, Dirk Almstedt was bitten by a mouse, while in Germany. Shortly after, a tick bit his wife Sonja. But neither of the Almstedts showed symptoms of illness then.

Seven years ago, when they moved to Wickenburg, Arizona, Dirk built a small business, and they had children. Soon afterward, the couple started noticing symptoms of Lyme disease, but the symptoms went undiagnosed until June, when Sonja became so ill that they sought medical attention.

"Her pain started at June 22, and life went to hell after that. It’s destroyed her completely,”"said Dirk. A neurological institute diagnosed her with Multiple Sclerosis, but the treatments didn’t help. Dirk researched her symptoms on the Internet, and found symptoms of chronic Lyme disease. Both Dirk and Sonja, and their six-year old daughter, now have confirmed cases of Lyme disease. Sonja suffers from severe "cluster headaches" and body pain. Needing to care for his sick wife and child, and two younger children, Dirk has had to take time away from his business, and he makes only one-third of his earlier income.

Lyme disease is hard to diagnose for five reasons. Most doctors have little or no experience in diagnosing Lyme disease. The "smart" bacteria reacts with the victim’s unique DNA, so that no two infected people have the same set of symptoms. Less than half of victims have a distinctive "bulls-eye" rash. It is almost impossible to grow in a laboratory, and is extremely slow-growing. It can change forms.

Advice: Spray insect repellent on your ankles before walking in the woods. If you get sick with a disease that’s difficult to diagnose, research your symptoms.

Read another misdiagnosis story, or read Patti Jares’ source story.

Each of the three placed the blame for her ordeal on another party in the courtroom: Cancer misdiagnosis lawsuit

Michelle Kachurak knew someone was responsible, and went to court to figure it out.

Doctors had detected high levels of hCG in the Pennsylvania woman’s blood, in fall 2000. Pregnancy and certain types of cancer are the only sources of HCG. In hindsight, it is clear that a rare protein in her body interfered with the test, yielding a false positive result. Though she likely never had any hCG in her system, doctors diagnosed her with choriocarcinoma, a life-threatening reproductive cancer associated with the uterine wall.

She began chemotherapy that September. The hCG never seemed to fully leave her system, even with increasingly aggressive chemotherapy.

She researched her symptoms on the Internet, and insisted on a urine test, which occurred in February 2001. The urine test showed no hCG. Unfortunately, her doctors failed to properly review the test results, and she only obtained the results months later. In the meantime, her chemotherapy continued—through a total of 12 rounds, over seven months.

Each of the three placed the blame for her ordeal on another party in the courtroom. The lawyer for the doctor who overlooked the urine test blames the doctor who made the misdiagnosis. The lawyer for the doctor who made the misdiagnosis blames Abbott Laboratories, which makes the blood test. Lawyers for Abbott Laboratories blamed both doctors, saying the product’s instructions clearly warned against using it to diagnose cancer. The doctors filed suit against Abbott, but have since dropped the lawsuit.

Advice: Read about your lab tests in TauMed’s free directory, and make sure you get a copy of the test results. After doing Internet research like Michelle, you may need to insist on additional tests.

Read another cancer story, or read Wade Malcolm’s source story.

Among previously healthy children and adults: MRSA

A story by the Centers for Disease Control:

Louisiana case 1. A previously healthy boy aged 10 years became ill with fever, cough, sore throat, and earache in both ears on December 6, 2006, and was treated with acetaminophen at home. The next day, his symptoms worsened and he was taken to a local Emergency Department in respiratory distress with a fever of 104°F (40°C). A chest X-ray was performed and revealed pneumonia in more than one lobe of his lungs. The patient was transferred to another hospital and admitted to the pediatric intensive care unit (PICU), where he required endotracheal intubation and mechanical ventilation. He was treated initially on December 7 with intravenous (IV) ceftriaxone; vancomycin was started the next day. On December 8, a rapid immunochromatographic assay for the qualitative detection of influenza A or B was performed on nasopharyngeal secretions and was positive for influenza A. A sputum culture obtained the same day grew MRSA; blood cultures were negative. The patient had leukopenia [a decreased number of white blood cells] and worsening hypotension (abnormally low blood pressure) and hypoxia [a shortage of oxygen in the body]. He died on December 9, approximately 42 hours after admission to the PICU. The cause of death was reported as bilateral pneumonia [in both lungs]. The patient had no documented history of MRSA; no documentation of influenza vaccination was present in either his medical record or the statewide immunization database, Louisiana Immunization Network for Kids Statewide (LINKS).

The CDC reported nine other similar cases in Lousiana and Georgia in December 2006 and January 2007. In six of them, the patient died. None had received a flu vaccine.

Advice: Write yourself a note on your calendar for the first Monday in November: Get yourselves vaccinated against the flu.

Read another flu story, or read CDC’s source story.

He saw God: A Painkiller Drug Overdose

Bradley Weafer, a 38-year old former social worker, received an overdose of ketamine, which is also used as an anesthetic, after undergoing back surgery in Vancouver, in Canada’s British Columbia.

He was supposed to get three milliliters an hour of the drug. Instead he got the whole 500-milliliter bag in five minutes. When the nurse went back to check on him after setting up an intravenous drip, she found him unresponsive and making jerky motions.

In court, Bradley recalled being sucked into black tunnels. It was hot and scary, he said, adding he saw his life flash before him, felt being born and placed in his mother's arms. He also said he saw God. He also testified he had suffered brain damage, and a psychiatrist and other witnesses supported his claim.

Now, six years later, the judge has ordered the health system to pay $63,000 in damages to Bradley for psychological trauma and damages.

Advice to patients on IV medications: Ask the nurse, or have your advocate ask the nurse, to verify and explain the pump settings for intravenous medications.

Read another overdose lawsuit story, or read CBC News’ source story.

Stories from the Help Line: Universal health insurance

From the files of HealthCare for All’s Help Line:

I have a cataract in my left eye and I'm losing my vision because it needs to be removed. I've been uninsured for four years and I couldn't afford surgery or health insurance. I feel absolutely thrilled that I now have health insurance that will cover this! You have no idea how incredible this is. - New Commonwealth Care Enrollee Joanne

I haven't had health insurance in years. Last time was probably fifteen years ago when the place that I worked closed down. I still owe my doctor for things he has done throughout the years. They just told me I have high blood pressure, and I haven't been taking the pills because they are too expensive. The first set of pills is like $20 every couple of weeks. I can get those now. - New Commonwealth Care Enrollee Irene

I've been going without coverage for probably five to ten years. I was told that I have a cyst on my kidney, but that was over a year ago. They said to check back with them when I have health insurance. I'm definitely going to get that checked out now. - New Commonwealth Care Enrollee Kevin

I have severe medical conditions and I have had no insurance for about a year. I have really bad asthma attacks and I let myself get really, really sick because I didn't have health insurance. I've had to go down to the hospital and it's a lot of bills. I feel wonderful relief [because of her new insurance coverage]! - New Commonwealth Care Enrollee Joan

This is a weight off of my shoulders! I can get this hammer nail on my feet taken care of. It hurts me to walk. I wanted to take care of it before, but I just can't afford it. I went to this clinic and they just cut the toenail, but it grew back weird again. I'm a security guard and I do a lot of walking and my feet hurt very badly. I'm going to get it taken care of now. - New Commonwealth Care Enrollee Arthur


I have let a number of things slide while I've been uninsured the past 3 years. I haven't had any physicals or treatment for my diverticulitis. There just hasn't been the money to get the appropriate stuff done to help with this. My first plan [now that he is covered] is to have a complete physical examination so that I can have the proper treatment for my conditions. - New Commonwealth Care Enrollee Timothy

Having health insurance would make the greatest difference in the world. I have diabetes and really need yearly MRIs and my testing supplies covered. I haven't had any of these things for close to a year. - New Commonwealth Care Enrollee Allison


Universal health insurance in Massachusetts is the creature of many fathers and mothers. At today’s press conference/birthday party in Boston, I was privileged to see many of them. To name and thank a partial list of at least the people I know: Ashley Adams, Cheri Andes, Larry Gordon, Rev. Hurman Hamilton, Nechama Katz, Leslie Kirwan, Ari Lipman, John McDonough, Nahma Nadich, Rabbi Barbara Penzner, Brian Rosman, and Lisa Vinikoor. Bravo!

Advice to people living outside Massachusetts: Organize a coalition like theirs.

Happy First Birthday, Universal Health Insurance: CHICA Bonita!

On April 12 last year, Massachusetts enacted an ambitious law to expand health coverage to most of the state’s 500,000 uninsured residents. Now, a year later, more than 110,000 formerly uninsured residents have coverage. MassHealth, the Medicaid provider, expanded to cover 50,000 of them, and 63,000 get coverage through the Commonwealth Health Insurance Connector Authority (CHICA). Another 100,000 eligible people have not yet enrolled.

Read today’s Boston Globe column by John McDonough--a proud father, who may be sleepless over his baby’s normal growing pains about affordability. And give him a cigar—a chocolate one…

P.S. Its dental coverage for newly insured people under the federal poverty line is quietly saving the lives of homeless kids like Deamonte Driver, may he rest in peace.

Advice to Americans outside of Massachusetts: Read how Massachusetts is handling this - and start watering your grassroots organizations—it’s Spring.

I’m sure they have some record: A laboratory medical error

The last time she saw her father - a soft-spoken man who "always had a joke for everyone" - was when she visited her parents' home in Florida for Christmas. "He was great," Jeanne Zeller said. "He even carried my luggage for me."

Around a week later, though, Thomas Zeller started to have shoulder pain. After enduring it for a week, the 69-year old man checked into the hospital, on Jan. 8, 2006. His initial vital signs were normal and his chief complaints were left shoulder pain and right hand swelling. X-rays of Zeller's left shoulder showed a slight dislocation of bone. On his first day in the hospital, he was given a Foley catheter to help with urine retention.

Thomas' temperature spiked to 102 degrees during the late evening of Jan. 11, and a blood culture was taken the next day. Meanwhile a cardiac catheterization on Jan. 11 had suggested dysfunction of the heart muscle (cardiomyopathy). Though the condition was serious, it didn't warrant his staying in the hospital any longer, and he was discharged to a nursing home on Jan. 14.

Thomas’ fever continued to spike during the next week, while he was having rehabilitative physical therapy in the nursing home. At the end of that week, he was transferred back to the hospital, on Jan. 20. There, the blood and urine cultures revealed Pseudomonas aeruginosa, a "superbug" resistant to most antibiotics. From there, his condition deteriorated, as the infection spread to his heart valves. On Feb. 15, Zeller's wife signed the "do not resuscitate" order, and he died soon afterward.

The superbug had spread, unknown and untreated, for a week, because the Jan. 12 blood culture result was delayed or missing until after he left the hospital. "By not having important lab results in the chart in a timely manner," Jeanne Zeller wrote to the Florida Agency for Health Care Administration, the hospital "sentenced my father to death."

The most likely explanation: "Persistent Pseudomonas aeruginosa bacteremia blood poisoning probably started off as a urinary tract infection," Dr. Murali Puthisigamani wrote after examining Thomas on Jan. 30.

The hospital had made at least three errors. First, unsanitary conditions were surprisingly prevalent. Three of nine patients sampled by AHCA "were not provided catheter care and/or personal hygiene care," according to AHCA’s report. Second, the initial lab result was delayed. Third, when the critical result was determined, staff told no one. Apparently the hospital had no effective system in place to immediately sound an alarm to doctors when laboratory staff learn of such critical lab results (also called "panic values").

The AHCA inspector had asked the infection control nurse why Thomas Zeller's Jan. 12 blood culture never made it to his chart. Her response: "If a patient left before the final results were in, they may be - I don't know how medical records does their filing. I'm sure they have some record."

Advice: Before you let your father into a hospital, ensure that the hospital participates in the Five Million Lives campaign of the Institute for Healthcare Improvement.

Read a story on misplaced lab results, or read Elena Lesley’s source story, dated April 1, 2007.

We demanded another X-ray: A medical misdiagnosis error

Before her fall last May 24, the mother of five was an active woman, who visited the supermarket once a week and regularly walked round Leyland Market in the United Kingdom with her husband.

The fall left her bedridden and in severe pain, and the pain led her to a hospital’s Emergency Room. There, staff gave her an X-ray and then told 84-year old Sarah Jackson there had been no fracture to her leg.

But her daughter in law was firm: "We demanded another X-ray," three weeks later. Doctors then found a break, and transferred her to a hospital that could perform a hip replacement. The operation took place on June 19. She died on July 8 after the wound became infected and she developed a blood infection (septicemia).

Now a court is holding an inquest about why her broken hip was undiagnosed for three weeks.

Advice for patients and advocates: Remember that the interpretation of X-rays is very subjective. Insist on an independent reading if you suspect the radiologist X-ray reader missed seeing a fracture.

Read another hip fracture misdiagnosis story, or read the source story.

He stopped strangers in the mall: Overdose lawsuits from misdiagnosis

Steven Ridley, a 45-year old husband and father of three in Napavine, Ohio, was suffering from back pain, so he saw his doctor. The doctor said his pain was due to a complication of rheumatic fever, and prescribed methadone, in a dose more than five times higher than recommended. Steven took the medicine, and died three days later.

His doctor believed there was an “epidemic” of undiagnosed patients in the county. Other doctors and state officials discounted this controversial theory. But the doctor persisted in believing it, and he even sometimes stopped strangers in the mall who had the red face he included in his diagnosis. His treatment was to prescribe strong narcotics, often methadone.

The state suspended his license to practice medicine. This was his sixteenth and final lawsuit, for up to 16 deaths of patients in his care.

Advice: If diagnosed with a rare disease, learn all you can about it, so you can ask intelligent skeptical questions.

Read another misdiagnosis story, or read Barbara LeBoe’s source story.

Sorry, you didn’t have cancer: A misdiagnosis story

Suffering from chest pain and difficulty breathing, Muriel Lavallee went to the hospital, and was sent to another hospital. There, doctors drew fluid from around her heart, which the pathologist reported was cancerous. Doctors immediately began chemotherapy, in November 2004. Over the next four months, she was hospitalized five times, spending 42 days in the hospital, with various infections, weakness, and outbreaks of the C. difficile bacterium. She became so ill that the doctor decided to stop the chemotherapy.

A week later, she was shocked to hear, "Sorry, you didn’t have cancer. You can go home now."

Then 59, she had lost her hair, and a sense of feeling in her hands and legs. Muriel is still suffering the loss of feeling, which prevents her from returning to her job at WalMart. She is seeking $155,000 from the Quebec Superior Court, which is scheduled to hear her lawsuit in July.

Advice to chemo patients: Ask the doctor the false positive rate of the test that showed you have cancer, and consider asking for an independent retest.

Read a cancer advocacy story, or read Dene Moore’s source story in the Toronto Star.

I didn't actually read it: Wrong site surgical error

Benjamin Houghton had much to be happy about. He was a father of four. He had survived metastatic testicular cancer, having received chemotherapy in 1989. He knew he could function normally with a single healthy testicle.

While there was no sign of the cancer’s recurrence, his left testicle was atrophied and painful, and there was a chance that it could harbor cancer cells, so he had surgery,, though it was not urgent. Surgeons mistakenly removed his healthy right testicle instead of the left, according to his lawsuit.

On the day of his surgery, the consent form stated that his right one should be removed, and a vasectomy performed on the left, when it should have read exactly the opposite. Benjamin didn’t have his glasses on. He explained, "The surgeon said, 'This is what we talked about before. Just sign here and here.' I didn’t actually read it." Benjamin, an Air Force veteran, did as the doctor ordered.

Lacking the testosterone from the healthy testicle, he may have future complications like sexual dysfunction, depression, fatigue, weight gain, and osteoporosis. He is suing for $200,000 for future healthcare costs and damages, hoping to get the healthcare system's attention, according to Attorney Susan Friery, MD.

Advice to surgical patients: Read the consent form carefully.

Read another veteran’s story, or read Mary Engel’s source story in the L.A. Times.

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... ;-)