The chief medical officer made the error public: Wrong side kidney surgery

When doctors at a Minnesota hospital made a mistake by removing the healthy kidney from a cancer patient, the hospital system's chief medical officer made the error public. 
Accounts by the hospital place blame on a crucial error that happened several weeks before the surgery. Apparently the kidney on the wrong side was identified on the patient's medical chart as potentially cancerous.
 New procedures have now been put into place requiring the surgical team to verify sites using the diagnostic imaging before an operation begins.

According to news reports, 24 wrong site surgeries were reported to the Minnesota Department of Health between October 2006 and October 2007. That is two per month, just in Minnesota!
 These would have surely gone unreported but for Minnesota Governor Tim Pawlenty, who signed a bill requiring that hospital errors must be reported to the state.

Advice to surgery patients: Read your medical chart carefully beforehand, or have your patient advocate do so.

Read another wrong site surgery story.

Thanks to Frank Bailey and Sach Oliver for their source blog post on March 24 at the InjuryBoard, the blawg of their law firm.

You wouldn't think she needed surgery: Death from breast augmentation surgery

Stephanie Kuleba had a charmed life: captain of the varsity cheerleading squad at West Boca High School in Florida, a near-perfect grade-point average, Barbie-doll looks and a ticket to the University of Florida, where she hoped to start her journey toward becoming a medical doctor.

Her friends said she was "perfect," so when Stephanie died Saturday of complications from breast augmentation surgery, none of them could understand how the girl whose success in life "was a sure thing" could perish in such a strange and devastating fashion.

"She was a role model for a lot of people," said friend and classmate Vicky Goldring, 16. "She was incredibly smart. She wanted to help people. She was just a happy 18-year-old girl."

While no official cause of death was released by authorities or Stepanie's family, many of her friends said she suffered a severe reaction to anesthesia given to her during a breast augmentation procedure Friday night.

Paramedics were called to an outpatient surgery center in Boca Raton, Florida, and rushed her to a nearby hospital, where she died Saturday.

With her long blonde hair and shy smile, Stephanie charmed people from an early age, friends said. A talented athlete, her path toward cheerleading began with competitive gymnastics. At 11, she had placed first all-around at a gymnastic invitational event in Tampa, competing in bars, beam, floor and vault events.

She had brains to match her beauty, friends said, earning a GPA above 4.0, acing advanced placement courses and earning an acceptance letter from the University of Florida, where she planned to head after graduation, imagining a career as a doctor.
"If you knew her, you wouldn't think she needed that [surgery]," said a friend. "She's perfect."

In recent years, doctors have been performing an increasing number of procedures such as breast implants, liposuction and tummy tucks on young women and even girls as young as 14.

The enormous popularity of reality TV shows like Extreme Makeover have fueled the desire of adolescent girls to alter their bodies permanently, and they are finding more surgeons willing to oblige them. Breast implants and liposuction are now bestowed by parents as graduation or birthday gifts. Some doctors say they have performed breast augmentations on Baby Boomer mothers and their teenage daughters. From 2002 to 2003, according to the American Society for Aesthetic Plastic Surgery, the number of girls 18 and younger who got breast implants nearly tripled, from 3,872 to 11,326.
Among all age groups, cosmetic implants have skyrocketed in popularity, according to the American Society of Plastic Surgeons. Last year, according to the ASPS, about 247,000 women got implants for augmentation, compared with 32,000 in 1992.

Anesthesia is a way to control pain using medication. In rare cases, an allergic reaction to local or general anesthetic can create health risks or even cause death.

Advice to people thinking of surgery at outpatient centers: Ask who’ll give the anesthesia.

Read another breast augmentation story.

Thanks to Kevin Deutsch for the source story in the March 24 issue of the Palm Beach Post.

Reluctantly, he said the dentist had done a good job: Medical tourism

When Josef Woodman's father decided to fly to Mexico for a few months to have some restorative dentistry done, his son was horrified, and took the trip with him out of fear for his father's well-being, as well as to satisfy his own curiosity.

"My dad had isolated three clinics in the area of Puerto Vallarta that performed the procedure he needed, and had eliminated two of them rather quickly. At the third, a board-certified dentist performed work that, here in the States, would have cost about $24,000, for $11,000 including accommodations and traveling costs for a month."

"I've traveled for my own procedure – a $4,000 root canal that, in Cost Rica, cost about 25% less. There were many Americans in the waiting room. Upon returning home, I had my dentist check the work. Reluctantly, he said the dentist had done a good job."

The Joint Commission International (JCI) a US-based accrediting body that evaluates medical facilities overseas with a particular focus on state-of-the-art technology, has been accrediting hospitals overseas for about 10 years, and in 2002 there were less than 40 accredited hospitals. Now, there are more than 130.

Singapore alone receives 400,000 visitors a year as part of medical tourism, and most speak English. It seems to be a growing trend; about 200,000 Americans, and even more Canadians, travelled abroad for medical care last year.

Upon their return, Mr. Woodman had a new smile – and his son had a new focus for his writing. Now Josef has written a book, Patients beyond Borders [which I haven’t read yet] about medical tourism.

Advice to underinsured people needing expensive care: In considering medical tourism, do your homework about the quality of care.

Browse for related stories in the index at the very bottom of this page, or read another medical tourism story.

Thanks to Jaclyn Stevenson for the source article in the March 2008 issue of The Healthcare News of Western Massachusetts.

He was stuck in quicksand: Building knowledge about multiple sclerosis

Todd Small was stuck in quicksand again. It happened, as always, at the Seattle machine shop where he worked. His shift complete, Todd was making the 150-yard walk to his car, when he realized that his left leg was sinking deep in the stuff. This happened nearly every day now. His Nikes still looked normal, firmly planted on the concrete floor. But he was stuck. His brain was sending an electrical pulse saying "walk," but the signal snagged on scar tissue where the myelin layer of insulation for the nerve fibers had broken down because of his multiple sclerosis. He felt up to his waist in quicksand.

Doctors usually treat this with baclofen, a muscle relaxant. Every day for 14 years, Todd had taken a 10-milligram pill. He explained, "My neurologist always told me if you take too much it will weaken your muscles. So I never wanted to go over 10 milligrams." It didn't seem to have that much effect, but he carried on as best he could.

He would have continued just as he was had he not logged on, last June, to a web site called PatientsLikeMe. There, he listed his symptoms and treatments, including other medications. The web site revealed that 200 or so other patients like him were taking a range of doses of baclofen, up to 80 milligrams, and are doing fine. "So it hits me," he recalls, "I am not taking nearly enough of this drug."

A few days later, he asked his neurologist to raise the dose; now he takes 40 milligrams daily. While his foot drop isn't cured, he no longer feels he's sinking into quicksand while walking to his car.

There are more than 7,000 Todd Smalls at PatientsLikeMe, with diseases like MS, Parkinson's, and AIDS. Each one contributes his or her experiences, and quantifies their dosages and symptoms. All this is compiled over time into bar graphs and progress curves, and it's all open for comparison and analysis by the patients.

These are not typical patients. They are co-practitioners who are treating their conditions and guiding their care, with their doctors – with profound implications. "People who use it will live longer; those who don't, won't," says Jamie Heywood, the co-founder of PatientsLikeMe. "That's evolution."

Advice to people with MS, Parkinson's, and AIDS: Consider using PatientsLikeMe. Discuss what you learn there with your doctor.

Browse for related stories in the index at the very bottom of this page, or read a story on an MS hero.

Thanks to Thomas Goetz for the source article in today's New York Times Magazine.

Like I had never heard before: A dialysis rescue story

Temarie Lee's story:
About five years ago I went to the Humane Society. I stuck a finger in a cage to say "hi" to a chubby black cat. He took to me straight away!

Three years later, I had fallen asleep after dialysis, when my arm started bleeding. Tubbee put his front paws on my face and started meowing like I had NEVER heard before. He woke me up and I was able to stop the bleeding. Tubbee saved my life.

Advice: Pets can be lifesavers, in more ways than one.

Read another pet story.

I don’t have any more leg to give: Wounded Iraq veterans

At the start of a House Veterans’ Affairs Committee hearing Thursday, the witnesses were asked to stand and raise their right hands to be sworn in.
But former Marine Cpl. Casey Owens lost both legs when he ran over two anti-tank mines in a Humvee on Sept. 20, 2004.

He didn’t stand.

And former Army Sgt. Edward Wade lost his right arm when his Humvee hit a roadside bomb Feb. 14, 2004.

He didn’t raise his hand.

But their stories convinced the committee that after a year of hearings, new laws, toll-free help lines and enhanced programs, troops and veterans still fall through the cracks of the military and Department of Veterans Affairs medical systems.
“Someone needs to reach back and find the people who have been lost over the last few years,” said Sarah Wade, who told her husband’s story because a severe traumatic brain injury has left him disabled.

Both service members showed examples of recent lapses in their care caused by rules and bureaucracy. Owens has yet to be fitted with a prosthesis for his right leg after enduring three surgeries to re-attach his femur muscle to the bone because it kept tearing.

The fourth time it tore — after having an additional three inches of thigh bone, nerve and muscle amputated in the third surgery — his VA doctor suggested the same surgery again.

When another doctor suggested a different surgery might work better for him, it took six months to get VA approval in Houston, compared with 72-hour approval for his previous surgery.

“It was very painful,” Owens said of the wait. “But I don’t have any more leg to give.”

He lost six months’ worth of rehabilitation, as well as time at school or work. He had to go back on pain medication, from which he had weaned himself. As he waited, his Tricare insurance was canceled as a result of a clerical error.
He was finally approved, Owens said, and the fourth surgery seems to have been successful. When he was ready to go off his medication again, he asked for a doctor’s supervision to help him through the withdrawal.

But the VA doctor was too busy, Owens said, and sent him to the substance abuse clinic — which sent him to a methadone clinic.

“I said I wanted to get off the drugs,” not go on methadone, Owens said. So he went to a different doctor with the help of a nonprofit agency and was off his meds within a week.

“Most of my care is from outside doctors,” he said. “I rarely see the VA.”
In fact, he’ll head to Oklahoma with the Wounded Warrior Program to be fitted with a prosthesis because VA scheduled him for only an hour of rehab per week and, when he complained, sent him to a civilian prosthetics specialist who said he didn’t have time to fit Owens with a device because he was swamped.

It took 18 months to finalize his VA claims, and he still doesn’t have copies of his military medical records.

Rep. Tim Walz, D-Minn., said Owens’ story made him ashamed. “I’m not even sure what to say,” he said. “Would it surprise you that VA officials have sat before us and said they don’t need any more resources?”

Madhulika Agarwal, chief of patient care services for the Veterans Health Administration, later testified that VA has increased its number of case managers, created the Federal Recovery Coordination Program in October for some injured vets, and is seeking funds for its volunteer respite program and foster home program.
The Wade family had issues similar to Owens.

“Ted was retired from the military before he regained consciousness,” she said. “Much of his treatment was by trial and error, as there was no model system of care for a patient like Ted, and there is still no long-term model today.”
Since his injury, he has been in seven facilities, his wife said. The blast that severed his right arm above the elbow also caused vision problems and left him with post-traumatic stress disorder.

“The amputee center at Walter Reed [Army Medical Center] are the only people who have been with us for the whole ride,” she said. “Ted’s care was very fragmental.”
She still doesn’t have his medical records, and she is fighting to appeal his disability rating so he can receive special compensation because he needs at-home care.

Meredith Beck, national policy director for the Wounded Warrior Project, said she hears similar tales all the time. She said the government needs to work on individualized care, rather than standardized care, and needs to make greater use of community resources rather than making veterans travel to VA facilities far from home for treatment.

“There’s a common misperception that all their problems are fixed now because their injuries occurred a while ago,” she said. “That’s why it’s so important to reach back and find those who still need help.”

Advice on the fifth anniversary of the Iraq war’s start: Elect a president who won’t lie us into a needless war.

Browse for related veterans’ stories in the index at the very bottom of this page.

Thanks to Kelly Kennedy for the source story in the March 17 issue of Navy Times.

She's attending first grade, and doing very well: Experimental treatment for a malignant brain tumor

Melanie Joy McDaniel was 9 months old in 2002 when her parents faced an agonizing decision. She had already had two operations for an ependymoma – malignant, progressive brain tumor - and doctors could not be sure they had removed all of the cancer. She needed more treatment, but standard chemotherapy offered little hope in exchange for its harsh side effects. And yet her parents knew that if they did nothing, the odds were high that the terminal cancerous tumor would return.

Doctors at Dana Farber Cancer Institute in Boston offered another option: an experimental treatment. Melanie's parents took a gamble, and signed her up. "It won't save her, but it may help other people," said Paul McDaniel, her father.

Recently, her father wrote to NY Times writer Denise Grady, "Melanie is now 7 years old, attending first grade, and doing very well. The doctors do not see any residual tumor in her brain. Their original diagnosis was that her tumor had no known cure."

The developer of the treatment, Dr. Judah Folkman, passed away on January 14. He used drugs strictly to fight the process by which tumors form new blood vessels to feed themselves ("angiogenesis"). The drugs, given orally in small frequent doses, included Celebrex, thalidomide, and two other cancer drugs. The approach is called metronomic, low-dose or antiangiogenic chemotherapy.

Advice to cancer patients: Remember that some experimental treatments really do save lives.

Read another brain tumor survivor’s story.

Thanks to Denise Grady for her source article in today's NY Times.

Meet the future: Brain enhancement

Ben's story:
I'm a high school student who took several smart drugs on the morning of my SAT and aced the Critical Reading section. Could I have done it without them? Maybe, but why bother? I don’t use amphetamines, being skeptical about their side-effect and addiction profiles, but the only reason I don't constantly use enormous amounts of clarifying supplements on a daily basis is the cost. I can only imagine that professionals are using the best and most expensive available. Not only have the substances aided me on tests and cleared up many a case of writer's block, they have made me more sociable and better at networking. Meet the future - safe, powerful, cognitive enhancement for the daily cost of a cup of coffee.

As Benedict Carey writes in the NY Times of March 9:
The public backlash against brain enhancement, if it comes, may hit home only after the practice becomes mainstream. Dr. Anjan Chatterjee suggested, "You can imagine a scenario in the future, when you're applying for a job and the employer says, 'Sure, you've got the talent for this, but we require you to take Adderall.' Now, maybe you do start to care about the ethical implications."

Advice: Go ask your mother.

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

Thanks to the source comment on the news blog web site of the Chronicle of Higher Education.

Silicone Breast Implants: Platinum Suzy's story

I worked for a national real estate company as a District Manager for nearly 19 years. I started with them in Houston, was transferred to Richmond, VA, then to Orlando and eventually to Nashville, where I have lived for the past nine years. In December of 2004, I was informed that all of my properties were going to be sold and that I would be laid off effective 5/1/05. This was fine. I was building a house and very busy with my son and my elderly parents, so the timing was very good for me personally. I had planned to take off the remainder of 2005 and return to work 1/1/06. I was turning 50 in November and my present to myself was breast implant surgery. I contacted a local teaching hospital and was told that they were having a clinical trial for silicone implants. When asked if they were safe, I was told that they had used them for 30 years and had never had any problems. I signed up, paid the $6,000 and had the surgery on 11/9/05.

Almost immediately I began to have unusual health symptoms. These included: neck, back and left shoulder pain, ringing in ears, dizziness, problems with depth perception, blurred vision, achy joints, fatigue, heart palpitations, memory problems, insomnia, tingling/numb hands and feet, twitching muscles, difficulty swallowing, and a metallic taste in my mouth. Prior to this, I had experienced only one of these symptoms - back pain resulting from a volleyball injury.

I spent all of 2006 getting sicker and sicker and more desperate to find out what was happening to me. Every day I would wake up with something new terribly wrong. By July I was terrified that I was going to die. I spent all my time in bed or in doctors' offices. At one point, I called my daughter and asked her to take my 12-year old son if something happened to me. I had never been ill like this before and never had to consult a specialist for any of these symptoms. The pain in my neck was so severe that I had cervical fusion performed on 8/2/06. Every doctor I was seeing and every physical therapist advised against this surgery after reviewing the results of the MRI's, but I felt this was the only option I had. Unfortunately, they were right. This surgery did not alleviate any of the symptoms I was having.

Sometime in September, my breasts began to ache and became hard. I visited my primary care doctor and my OB-GYN of eight years and they confirmed that I had developed contracture of the silicone implants. They were removed on 9/29/06. I never considered the problems to be connected to the silicone implants because I had saline implant surgery in November, 1995. I had no problems with these-no contracture, but I thought I needed to have the saline implants changed out because there was some rippling on the sides of my breasts. (I am on the thin side and the edge of the implant could be felt). Within a few weeks of the explant surgery, many symptoms were gone. By six months, all symptoms were gone with the exception of severe neck and thoracic back pain (which I still have every day and continue to do physical therapy for) and cognitive/memory issues that my doctor believes is due to the trauma of being so ill during the time I had the silicone implants. (Post Traumatic Stress Disorder is the diagnosis.)

Two doctors at the same medical facility have told me that I had a reaction to the chemicals in the implants. Although I do not fully understand the process that made me sick, I believe that my symptoms were caused by nerve inflammation due to exposure to the chemicals in the implants. I was tested for platinum and it was found in three different oxidation levels-0, +2 and +4 in my urine. I have asked INAMED for a list of the other chemicals, but they did not respond to my certified letter.

I have spent about $30,000 for the privilege of participating in the silicone research trial, the explantation, MRI's, and over 100 office visits to diagnose and treat my health problems. I am also uninsurable as a result of the treatments I have received.

However, the good news is that the vast majority of women get better once the implants are removed.

Advice to women thinking of having breast implants: Be sure to do your research first.

Read another of our breast implant stories.

Seventeen doctors for shortness of breath: Unnecessary services

Dr. Sandeep Jauhar's story:
I recently took care of a 50-year-old man who had been admitted to the hospital short of breath. During his month-long stay he was seen by a hematologist, a endocrinologist, a kidney specialist, a podiatrist, two cardiologists, a cardiac electrophysiologist, an infectious-diseases specialist, a pulmonologist, an ear-nose-throat specialist, a urologist, a gastroenterologist, a neurologist, a general surgeon, a thoracic surgeon and a pain specialist.

He underwent 12 procedures, including cardiac catheterization, a pacemaker implant and a bone-marrow biopsy (to work up chronic anemia). When he was discharged, follow-up visits were scheduled with seven specialists.

Expert consultations had sprouted with little rhyme, reason or coordination.

Doctors are usually reimbursed for whatever they bill. Where doctors are paid piecework for their services, if you have a slew of physicians and a willing patient, almost any sort of terrible excess can occur. As reimbursement rates have declined in recent years, most doctors have adapted by increasing the quantity of services. The culture in practice is to grab patients and generate volume. Doctors are doing too much testing and too many procedures, often for the sake of business.

Advice: Ask, or have your patient advocate ask, about the value of an uncomfortable or painful procedure before it is performed.

More like an artist’s retreat than a treatment program: the communal GROW house

Bruce's story
The world where he was born, then where he was beaten and raped by relatives, did not invite him to open up. Understandably, he did not learn to communicate his true emotions in his family's abusive home. So early on, Bruce made a variety of survival adjustments. As a child, he learned to block out his pain by talking to an imaginary friend. When he joined the Navy at 17, right at the end of the Vietnam War, he was quickly introduced into drinking and getting high. The alcohol and drugs provided him with welcome relief from his psychic wounds. He couldn't just drink a little; he had to drink until he fell down, which led to a serious motorcycle accident. He was pronounced dead at the scene by paramedics, resuscitated, pronounced dead on arrival at the hospital, and brought back to life once more. After he recovered physically from the wreck, he decided to deepen his recovery by attending AA.

Bruce soon became a drug and alcohol counselor and got a Bachelor's degree, but the more he counseled others for their addictions, the more his own unexamined mental illness became apparent to him. His powerful capacity for denial, reinforced by his role as a mental health professional, allowed Bruce to ignore his worsening symptoms. After three suicide attempts and florid hallucinations and delusions of being possessed by demons, he ended up in a state hospital, where he heard of GROW.

Bruce went to a few GROW groups after his discharge from the state psychiatric ward. From his sporadic attendance, at the groups, he knew he needed to learn to be honest, to argue, and to disagree.

"I've got a lot of head knowledge," he said, pointing his tattooed, ropy arm to his head and chest. "But I've never been able to get it from my head to my heart."

Beaten into submission by mental illness, Bruce was willing to make the necessary sacrifices to find stability. Part of the GROW organization included a communal home, where people like him could live together and support each other in their suffering. He decided he was ready to take direction from someone else and willing to give up his privacy. He made his way to the GROW house.

It housed a nontraditional family. Its residents were all adults, unrelated to each other, who shared the burden of mental illness and the need for a place to call home.

He credited the balance of work, play, rest, eating and studying inside the community for the healing he experienced. AA meetings alone were not enough. Once he moved into the GROW house, Bruce learned how to handle himself maturely and began to generalize his new way of being to the larger community. Before GROW, Bruce could not keep a job because his living arrangements did not provide enough psychological safety to keep his overwhelming childhood memories at bay. Unexamined wounds resurfaced, and he would not show up at work, or he would fly into a rage if he got frustrated. Complete and honest disclosure was the norm for GROW residents, so Bruce never felt ridiculed or stigmatized for baring his soul. Residents talked about their illnesses in everyday terms, staying away from clinical labels.

"I learned to go by what I knew, not what I felt," Bruce explained, quoting GROW's own phrasing. "So instead of raging on a piece of equipment I couldn't fix, I remembered that I could do it after I calmed down."

The GROW house was more like an artist's retreat than a treatment program. People went there to retreat from the outside world and to work on their masterpieces: their own lives. The communal aspect of their daily interactions with other residents had more in common with writing workshops, where artists give each other feedback on ways to improve their respective work, than with the counseling of a therapeutic authority.

Bruce was surprised by how well people got along in the house, considering they were always in each other's company. People were at once able to follow a familiar routine and to cope with unexpected changes. Bruce found the daily household routine to be a reliable support, a guardrail that kept him on the road to rehabilitation, away from the pathological extremes of paralysis and extreme change. That link people felt with each other inside the house as they completed everyday tasks together was very spiritual to Bruce. The subtle levels of mutual support achieved inside the GROW house started with physical proximity and shared routines.

Advice: Find a supportive healing community for family members with severe mental illness.

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

Thanks to Leonard Jason and Martin Perdoux for the source story in their book, Havens: Stories of True Community Healing.

They got into the business sideways: Recovering physicians in addiction treatment

[Recovering physician] addicts increasingly encountered one another at ASAM events. One talked about a late 1980s review course for ASAM's certification exam where there was an AA meeting of the hotel hosting the event:

"There were probably 150 of us in that course…So I showed up for [the AA meeting], being a recovering person myself, and almost everyone from upstairs was downstairs. Out of the 150 who were there [for the review course], I would say there were about 120 in that [AA] meeting, which was a real eye-opener. So the first five or ten years that I was doing this, most of the other doctors that I talked to were like me – they were just old drunks who sort of got into the business sideways."

Like Dr. Douglas Talbott himself, the graduates of Talbott’s impaired physicians program (the Disabled Doctors' Plan] were inspired by their own recovery from addiction to reorient their careers to care for other alcoholics and drug addicts. "These people came out bonded into AA," said an addiction treatment expert familiar with this history. "And many of these people – surgeons, obstetricians, anesthesiologists...internists, family physicians – decided that they wanted to work in the field of addiction." Years later Talbott himself wrote that "most [state-run treatment] programs were initiated by physicians who were in the recovery phase of their disease."

Another physician in recovery recalls that there were "anesthesiologists galore…[and] a handful of…pathologists who didn't deal with 'live ones' at all. We even had a couple of forensic pathologists which I thought was great sport. Can you think of better people to be counseling you? But there they were. So it's been a grand hodge podge."

Advice: Help others who are making the same mistakes you made.

Browse for related stories in the index at the very bottom of this page, or read another impaired physician story.

Thanks to Dr. Christopher Freed for the source article in the Spring 2007 issue of Contemporary Drug Problems.

I feel like a movie star: Medication reminder nurses and aides

Ida Canapp insists she would take her five medications and two vitamin pills every day whether or not a nurse's aide came to her Parkville, Maryland home to monitor her. But her niece, Renee Gowland, knows this is the dementia talking. "She wouldn't take them. Or she wouldn't know if she was taking the a.m. or p.m. doses."

At 82, Ida is energetic, hospitable and fiercely independent, with the help of Aricept, a drug that tempers the effects of mild to moderate Alzheimer's Disease. Ida needs to take medicine for her diabetes, high cholesterol, high blood pressure, and depression, and it’s hard for her to take them all at the right time.

Without assistance from an elder care group called Senior Helpers, based in Towson, Maryland, Ida would probably have to give up her home, where she has lived for more than 50 years, and move to an assisted living facility or nursing home, her niece said.

Through the MedServ program, Senior Helpers sends a registered nurse to manage Ida's medicine-taking. The nurse fills marked pill boxes every two weeks with Ida's medicines. She monitors the prescriptions and communicates with Ida’s pharmacy and doctors. An aide comes daily to fix meals and run errands with Ida, and reminds her to take her pills when appropriate – and watches her take them.

With so many people checking on her well-being, Ida says, "I feel like a movie star."

Her niece says this helps Ida "because she can stay here, she can go where she wants to go, and can do what she wants to do."

"About 23% of nursing home admissions is due to to mismanagement of medications," says Dr. Joan Chang, medical director at Good Samaritan Nursing Center. "Because people don’t have that social support, they don't have the means of ways of getting their medication taken appropriately, so they have to go to some kind of assisted living, where someone is there to help."

Advice to family members of forgetful seniors: Finding a way to help them keep taking their medicine might keep them out of a nursing home.


Browse for related stories in the index at the very bottom of this page, or read a story on use of multiple drugs by elderly people.

Thanks to Tanika White for the source article in the March 9 issue of the Baltimore Sun.

I feel like I will be the most educated patient: Bariatric surgery

From “Aquameliza,” age 38:
My PCP has given me a referral and I have my first appointment with my surgeon (Dr T at BWH in Boston) on 2/27/08. I cannot wait, but am terrified of not getting insurance approval. I have Harvard Pilgrim HMO - the plan and my employer allow for bariatric surgery and do not appear terribly strict on the requirements, but becuase I want this so badly, I am sure that something will prevent me from getting approval.

I have been thinking about this surgery for more than 5 years. A girlfriend went to Mexico to have it done then and watching her lose weight effortlessly made me soooo jealous. However, I also watched her gain weight back because she did not get fills or follow any program or get any real support. I learned from her that the only way to do this is to do it all the way and follow whatever they tell me to do. Another friend had it done at the same hospital with insurance coverage 2 years ago and looks great. Finally, my father was banded in January and for a man who could never lose weight- he has lost 26 pounds.

I feel like I will be the most educated patient - I read everything there is to read, have watched the surgery on the web and have discussed this with my therapist. Honestly, I do not know what I will do if I am turned down. I can't even think about it - the idea of starting ANOTHER diet makes my stomach hurt and my head ache. I cannot walk into another Weight Watchers Week one meeting - or eat any more cabbage soup or try any more pills - I have even bought ones not approved by the FDA from Hong Kong - how crazy is that???!! Diets have been nothing but bad for me- I lose 20 pounds only to gain back 25. Aurgh!!!!

I guess I am writing to see if anyone else went through this or is going through this same thing now. I feel a little obsessive and do not like that - I wish I could stop thinking about it, but I feel like the next stage of my life is on hold until I get the thumbs up and have a surgery date.

Anyone else ever feel like this??

Advice: Become a thoroughly educated patient before undergoing any elective surgery.

Browse for related stories in the index at the very bottom of this page, or read another _elective surgery story.

Thanks to Aquameliza for the source, her comment at lapbandtalk.com

Both complaints accused him of the same error: A fatal drug interaction medication error

Laura Migliano had herniated a disk in her back while doing sit-ups back in 1994. She spent a decade fighting the pain — with surgery, steroid injections, and finally with a battery-powered spinal cord stimulator. The stimulator helped, reducing the ache with electric shock. But then the battery died. Laura, who was 41 years old by that time in 2004, was in agony when she saw a pain specialist in Mesa, Arizona.

It turned out she needed only a battery change. But the doctor couldn't replace the battery for another six days, so he prescribed painkillers. Although a nurse by profession, Laura had no idea that the doctor's prescribed dosage of methadone — a narcotic usually reserved for heroin addicts trying to kick the habit — could interact with her other painkillers and kill her.

It did.

In his notes, the doctor wrote that Laura should take five to 10 milligrams of methadone. But on her prescription, he wrote 120 milligrams — a fatal dose when combined with her other medications, which he had never determined before writing the prescription.

Laura drove to the pharmacy and filled the prescription. Then she went home and drank the pills down with a large glass of water — just as the doctor ordered. She was expecting relief from her lower-back pain.

Instead, her best friend found her dead the next morning.

Within 30 days of her death in 2004, the state medical board received two more serious complaints against the same doctor. Both accused him of the same error that had killed Laura — prescribing narcotics without learning what drugs his patients were taking and failing to document their visits.

Advice to patients on pain medications: Verify that your drugs will not dangerously interact with each other by using the free drug interaction checker under our Resources and Links section.

Browse for similar stories in our index at the very bottom of this page, or read a celebrity’s drug interaction story.

Thanks to John Dickerson for the source story in the Phoenix New Times News of March 6.

Patients like me are part of the problem: Hospital aesthetics

Virginia Postrel's critique of hospital aesthetics:
One of the bleakest rooms at the UCLA Medical Plaza, where I spend my time [as a breast cancer patient], is a waiting room in the imaging center. Small and beige, it epitomizes aesthetic neglect, with stained chairs, mismatched tiles, and tattered copies of US News and World Report. The only wall art is a drug-company poster on myocardial perfusion imaging – just the thing to comfort anxious patients.

Patients like me are part of the problem. When I was diagnosed with breast cancer, I didn't shop around for the most attractive chemotherapy clinic. I went to the best oncologist I could find and got the room that came with him. "Most people would take the most competent clinicians even if they were in the worst possible environment," says Jain Malkin, a San Diego-based interior designer and author of several reference books on healthcare design.

But why assume good medicine must come with bad design? "Evidence-based design" is the great hope of professionals who want to upgrade the look and feel of medical centers. A seminal article by Roger Ulrich described the health outcomes of patients in different kinds of hospital rooms. Ulrich looked at patients recovering from gallbladder surgery. He matched the patients to control for factors that might affect the speed of their recovery, like age and obesity. Patients with a view of a grove of trees had shorter hospital stays and required significantly less expensive pain medication than patients whose rooms only gave them a view of a brick wall. Other studies have found similar positive effects from sunny hospital rooms, and rooms with images of nature on the walls.

Advice to family members of hospital patients: Bring soothing pictures and plants to the hospital room.

Browse for similar stories in our index at the very bottom of this page.

Thanks to Virginia Postrel for the source story in the April issue of the Atlantic Magazine.

Illegally writing prescriptions to himself: An impaired physician in long-term recovery

He had five knee operations, and by the late 1970s he was treating his constant pain by illegally writing prescriptions to himself. Dr. Michael Palmer became hooked on painkillers and was drinking heavily. In 1978 he was arrested for writing false prescriptions, was put on probation, and had to surrender his right to prescribe narcotics for two years. For nearly a year, he didn't work at all.

Then, he says, "a group of doctors with problems similar to mine mentored me and helped me. By the end of the 1970s I was in solid recovery, and by 1981 I began to reach out to find doctors I could help. It coincided with the beginning of writing [novels]. In retrospect, having a book to write was one of the things that kept me sane."

After his first novel was published, he left private practice to serve in the Emergency Room at the Falmouth Hospital, where he worked for the next ten years. He volunteered to work with the "Impaired Physicians Committee" of the Massachusetts Medical Society. In 1993, around the time its name was changed to Physician Health Services, he left the E.R. and began to work with troubled doctors nearly full-time.

He explains, "It seemed to me that I was put on earth to take care of people. This is what I should be doing, and I never got tired of it."

Advice to people struggling with tough health or personal problems: See if writing, and helping others who have your problems, helps in your own long-term recovery, as it has for Dr. Palmer.

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

Thanks to David Mehegan for the source story in the Feb. 23 issue of the Boston Globe.

The FDA had violated its own policy: Adverse drug reactions from defective heparin

Baxter International announced recently that it is recalling virtually all its heparin products. Baxter makes and sells more than 500,000 multi-dose vials of heparin in the U.S. each month. Heparin is used to prevent blood from clotting during dialysis and some common forms of heart surgery.

More than 400 adverse reactions have already been reported in the US from the use of heparin, including up to 21 deaths. Investigators are trying to identify the root cause, which seems related to the practices of small Chinese suppliers of crude heparin.

To make heparin, workers collect and cook the mucous membrane from the intestines of slaughtered pigs, producing crude heparin. Major producers refine that and sell it to Baxter and others, which make the finished product for use in hospitals.

Blue ear pig disease has swept through China, depleting stocks, and leading some farmers to sell sick pigs. This led companies to switch to using small, often unsanitary and unregulated village workshops as less expensive suppliers. As much as 70% of China’s crude heparin now comes from such small factories in poor villages.

The FDA had admitted this month that it had violated its own policy by failing to inspect Changzhou SPL, located west of Shanghai, before the factory began shipping crude heparin, an ingredient of the medicine heparin, in 2004. The Chinese government does not inspect such factories.

Advice to heart surgery and dialysis patients: Ascertain, or ask your patient advocate to ascertain, the source of the heparin you will receive. A sufficient supply is available from safer suppliers.

Browse for related stories in the index at the very bottom of this page.

Thanks to Walt Bogdanich and David Barboza for the two source articles in last week's NY Times.

He used an alias: A lawsuit on John Ritter's misdiagnosis

When actor John Ritter checked into a Burbank, California hospital the day he died, he used an alias, "Edwin Marcus," to protect his privacy. He died of an aortic tear, which might have been diagnosed by an X-ray. His widow, Amy Yasbeck, is suing two of the doctors who treated him, saying they misdiagnosed his condition, and did not order an X-ray. The doctors' attorneys say the name change created confusion at the hospital, for which John is responsible.

John Ritter was 54 years old when he died of an aortic tear in 2003. His widow is seeking $67 million in damages.

Advice: Patients using aliases, or their advocates, should carefully track their care against the hospital's checklist to ensure all necessary physician orders are performed.

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

Thanks to ContactMusic.com for the source story yesterday.

She can't help but wonder: Adverse effects of Procrit and Aranesp

Belinda G.'s mother was a chemotherapy patient who was also given anemia drugs. Although Belinda acknowledges that her mother was dying of small cell cancer, Belinda can't help but wonder if the use of anemia drugs resulted in her mother passing away sooner than she would have otherwise.

My mom had been sick since 2000 with lung cancer and it was small cell carcinoma at that time. She beat it and went into remission in 2001. She had never had Procrit or Epogen prior to her remission. Her cancer came back and the cancer spread to her adrenal glands and her organs. They did radiation every day for 10 days and chemo at the same time. The Procrit was given to her in injections that started around February or March 2002.

She was a fighter—at the beginning she even continued working and running apartments. Once she started getting shots more frequently, her cancer got progressively worse. She died rather suddenly on January 15, 2003. She was on the shots until she passed away.

They [medical staff] were telling her that she needed to have the shot because her cell count was low. One time, she asked for it as though she believed it was something she needed to help the situation. I asked why she was taking it, when she did better without it. Back then, there was not a lot known about that.

Every time my mom had chemotherapy, they gave her the anemia shots. She had been doing well until they started the shots. Did they accelerate the process? I don't know. Small cell is inoperable and there was nothing we can do about it. But I think the anemia drugs might have progressed the situation.

Belinda is not the only one left wondering if anemia drugs either caused a loved one's death or accelerated the rate at which a loved one has died. In November, the FDA strengthened the safety warning on Aranesp, Epogen and Procrit to alert patients to the risk of death, heart attack and the progression of certain cancers. Additionally, a new study has been released linking anemia drugs to an increased risk of leukemia in patients with myelofibrosis.

Doctors have also been warned to use the lowest possible doses of the anemia drugs required to avoid a blood transfusion. Patients who receive higher doses of Aranesp, Epogen or Procrit are at an increased risk of accelerated tumor development.

Today Andrew Pollack of the NY Times described a meta-analysis (carefully pooling the results of multiple studies) in the Journal of the American Medical Association (JAMA). Dr. Charles Bennett and the other authors of the study found that widely used anemia drugs raise the risk of death among cancer patients by 10%.

The U.S. Food and Drug Administration (FDA) will convene a meeting on March 13 to discuss restrictions on the use of the drugs.

Advice to cancer patients taking Aranesp or Procrit: Alert your doctor to the study in this highly esteemed medical journal, and ask your doctor whether and how it should affect your treatment.

Browse for similar stories in our index at the very bottom of this page, or read an FDA drug review story.

Thanks to Heidi Turner for the source story in the Jan. 1 issue of LawyersandSettlements.com.

He retired at 34: Concussions in football receiver Wayne Chrebet

At age 34, Wayne Chrebet retired from his football career with the New York Jets because of post-concussion syndrome, after suffering at least six concussions. He sometimes had returned to games in which he had been knocked unconscious. He was the third star pass receiver on the New York Jets to retire because of post-concussion syndrome, along with Laveranues Coles and Al Toon.

Wayne has recently acknowledged he has bouts of depression and memory problems so severe that he cannot make the routine drive from his home in New Jersey to his restaurant in Long Island without a global positioning system.

The Jets' team physician has drawn criticism because he is both the leader of the National Football League’s commission on concussions and because under his care, three of his team's star receivers have had multiple concussions that ended their careers and left them with permanent disabilities. The team physician's desire to both help his team win and care for the players' health poses an innate conflict of interest.

Advice to parents of football players: Make sure you get your son's family physician to independently verify the team physician's clearance for him to resume play.

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

Thanks to Alan Schwarz for the source story in the NY Times of Dec. 22.

It's hard to be my doctor: Surgeon DeBakey as patient

The pioneering heart surgeon's story:
The doctor who operated on me only a few years ago was one I trained. I was lucky to have somebody like that.

[Dr. DeBakey, now 99, pioneered numerous cardiac procedures, including the cardiac bypass and the artificial heart transplant. In 1954, he devised a technique to repair arteries using a Dacron tube he made on his wife's sewing machine. In 2006, he became the oldest survivor of the procedure he invented.]

Never had a symptom. The pain came like a bullet out of the blue. I was alone when it started. My wife and my daughter had gone out. The pain is often described as the worst pain you can have. The pain was so severe that I would have welcomed anything to relieve it – including death. I wasn't going to fight it I look upon death as a part of living, just as some trees lose all their leaves in the winter and have them replaced in the spring. But at the same time, part of me was thinking, What caused this pain? Part of me was doing a diagnosis on myself – which, as it turned out, was correct. Aortic dissection. I'd written more articles about the condition than anybody in the world, and I resigned myself to having a heart stoppage. The pain didn't teach me anything about the heart. It simply emphasized what I had already learned.

I was a little surprised to find myself recovering after the surgery. Then gratified to have been given a second life.

During my recovery, I played possum. I pretended to be sleeping and listened to what the doctors standing over my bed were saying about my condition. Then I'd argue with them about the therapy. I'd make them prove I needed it.

I guess it's hard to be my doctor.

Advice: Be a polite and vigorous advocate for your care in the hospital, or get a patient advocate.

Browse for related stories in the index at the very bottom of this page, or read another story about Dr. DeBakey.

Thanks to Cal Fussman for the source interview of Dr. DeBakey in the March 2008 issue of Esquire magazine.

The insurer pulled the rug out from under her: Lawsuit on insurer’s refusal to pay for breast cancer treatment

A Southern California woman who had her medical coverage canceled as she was undergoing treatment for breast cancer was awarded more than $9 million Friday in a case against one of California's largest health insurers.

Patsy Bates, a 52-year-old mother of two, had previously been insured with another company but was persuaded to switch to a Health Net policy after an agent suggested she could save money.

She said she had undergone surgery to remove a tumor and had received her first two chemotherapy treatments when doctors stopped treating her because her bills were going unpaid.

Patsy, a hairdresser from Lakewood (Los Angeles County), had been left with more than $129,000 in unpaid medical bills when Health Net Inc. canceled her policy in 2004. The insurer contended that she had failed to disclose a heart condition and lied about her weight when she applied for the policy in July 2003.

But arbitration judge Sam Cianchetti ordered Health Net to pay her medical bills, plus $8.4 million in punitive damages and $750,000 for emotional distress.

"It's hard to imagine a situation more trying than the one Bates has had to endure," the judge wrote in his findings. "The rug was pulled out from underneath, and that occurred at a time when she is diagnosed with breast cancer, one of the leading causes of death for women."

Health insurers have come under fire from state regulators, attorneys and advocates for using mistakes or omissions in a member's application to justify canceling coverage after a policyholder becomes ill.

Friday's award marked the first punitive damages ordered by a judge in a case against an insurer for rescinding policies. Hundreds of cases in California have been settled quietly in confidential agreements.

"This punitive award will do more than anything to stop the shameful practice of post-claiming underwriting," said Bates' attorney, William Shernoff. "Other health insurers will obviously have to hear the message that the practice of canceling people's health insurance after they become sick will not be tolerated by the public."

Health Net officials released a statement Friday saying the insurer will rescind no policies in the future without a binding, third-party review process.

Health Net also said it would conduct a review of its practices and the way its brokers and agents are trained. The company said it is working with state regulators and will make additional announcements in the coming weeks.

Friday's award capped a difficult week for the insurer, which included being sued by the Los Angeles city attorney on claims of unlawful and deceptive business practices in connection with its rescission practices. City Attorney Rocky Delgadillo also said the company illegally ran an incentive program in which it paid bonuses to an administrator for meeting policy-cancellation targets.

"I don't have anger toward the company," said Patsy, whose cancer is in remission but who has some health problems. "I hope what they're saying is true, and that they're going to change their policies and take care of the people they insure."

Advice: Avoid insurers whom consumers frequently identify as refusing to pay for care when their beneficiaries get sick. Call your local Better Business Bureau and state Attorney General's office to find out their track record.

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

Thanks to the San Francisco Chronicle staff for today's source story.

Susan Sontag's choice for aggressive care

David Rieff's story on his mother, Susan Sontag
What my mother wanted – which was to undergo any treatment, no matter how terrible, that promised a cure for her disease – would probably have been viewed skeptically by a physician schooled in what Dr. Jerome Groopman calls the "bean counting" of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.

Obviously, there is a cost to this. In opting for treatment – in her case, a bone-marrow transplant – my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.

Advice: Find a doctor who takes to heart your preferences about risks and benefits, and the degree of aggressiveness you want in your care.

Browse for related stories in the index at the very bottom of this page, or read another story from David’s book.

Thanks to David Rieff for the source story in Sunday's New York Times Magazine, drawn from his book, Swimming in a Sea of Death: A Son's Memoir.

This nonsensical situation: Prohibition on personal injury lawsuits about medical devices

In 1994, the U.S. Food and Drug Administration issued its pre-market approval for the use of a balloon catheter made by Medtronic for widening coronary arteries. Two years later, Charles Riegel underwent angioplasty – a form of heart surgery that uses a special balloon device to mash plaque against the walls of the artery to allow blood to flow more freely. The balloon catheter burst while being inserted, injuring him. He filed a lawsuit against Medtronic, the device maker, but the case was dismissed. He died after the lawsuit was filed, and his widow, Donna, carried on the case, appealing the dismissal of the case to the U.S. Supreme Court.

The Supreme Court decided on Wednesday that makers of medical devices like implantable defibrillators or breast implants are immune from liability for personal injuries as long as the FDA approved the device before it was marketed and the device meets the FDA's specifications.
The case turned on what Congress had meant by a clause in the 1976 Medical Device Amendments statute that bars states from imposing different requirements from federal requirements. The justices apparently decided on the Congress' intent without asking either of two current congressmen who had key roles in moving the bill forward back in 1976. Both the Senate’s sole sponsor of that legislation – Sen. Teddy Kennedy – and Rep. Henry Waxman, a member of the House panel that approved the bill, were sharply critical of the decision.

Sen. Kennedy commented, "In enacting legislation on medical devices, Congress never intended that FDA approval would give blanket immunity to manufacturers from liability for injuries caused by faulty devices." Rep. Waxman said, "The Supreme Court's decision strips consumers of the rights they've had for decades. This isn't what Congress intended, and we'll fix this nonsensical situation."

Advice to people who may need surgery to implant a medical device: Do your homework carefully to understand the safety of various devices.

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

Thanks to Linda Greenhouse for the source article in today's NY Times.

This sounds insane, and it is: Refusing payment for hospital drug errors

On Feb. 14, the Boston Globe described a study by my esteemed colleague Dr. David Bates that revealed that one in ten patients had serious preventable drug errors during their treatment at six selected community hospitals in Massachusetts.

Today the Globe published my letter in response, under the heading "Put hospitals on path to improvement:"

To the Editor:
The article is shocking. Adding insult to all these injuries is the fact that patients pay for these errors. Health insurers pay the hospitals as billed, and insurers build in all the costs when they set our insurance premiums.

The most powerful thing we can do as patients is to urge our insurers not to pay for hospital errors that we suffer. Insurers could withhold payment to the hospital, which would send the hospital the right message. Otherwise, given the reimbursement system, hospitals could benefit financially for additional days of hospital care that were incurred because of an error. (This sounds insane, and it is, as I know all too well from my work in patient safety.)

Consumers must demand safer hospital care. Strangely, this could be the best way to get it.

Browse for similar stories in our index at the very bottom of this page, or read a story on pending legislation to report and reduce hospital errors.

She wanted the science as well as the magic: Susan Sontag's patient-doctor relationship

David Rieff's story:
When my mother [Susan Sontag] found out she had myelodysplastic syndrome, the terrible blood cancer that eventually took her life, she oscillated between numb despair and acute panic. When she was panicked, nothing those who loved her did or said could calm her down, let alone console her. And yet we soon learned that if we could reach Stephen Nimer, her principal physician at the Memorial Sloan-Kettering Cancer Center, by telephone, or if, better still, Dr. Nimer could make the time to see my mother, however briefly, her awful distress would abate – at least for a while.

Observing my mother's exchanges with Dr. Nimer, I could not help wondering why what he said consoled her. For he never played down the lethality of the disease, nor did he hold out false hope. Doubtless, Dr. Nimer's long experience with gravely ill people, the hard-won human skills he acquired over decades of practice, played a central role. The comfort my mother derived from speaking with him was also due to her own very traditional conception of their relationship. She had no time for alternative medicine, nor did she believe that her will would somehow be strong enough to counter the scientific realities.

But my mother's relationship with her principal doctors was only fully effective because in some ways it was shamanistic. Of course, she wanted the science as well as the magic….

Advice: Find a doctor who knows both medical science and the magic of consolation.

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

Thanks to David Rieff for the source article in today's NY Times Magazine, drawn from his book, "Swimming in a Sea of Death: A Son's Memoir."

The scar adds to my collection: medical malpractice in heart surgery

Blogger Espe’s story:

Dec. 7, 2007:
so, my heart surgery is just around the corner...damn...i've been waiting since june for my heart problem to have some closure and that day is almost here. i thought i'd be shitting it by now, but i'm not. i'm looking forward to the morphine and other prescription pain killers...and the scar....well, it adds to the collection. hopefully, i'll be out of the hospital before christmas. it would really suck having to spend the holiday in the hospital. i don't want to put my family through that again.

Feb. 16:
since today it has been two months since i've been in the hospital. i came in for a heart surgery that was supposed to last four hours, but i've been stuck here for a medical malpractice that occurred during the surgery. i basically ended up with my right leg cut on both sides by a vascular doctor by emergency during the surgery because my leg was swollen. the team who did my heart surgery did not notice my leg until the surgery was over. i've been through near amputations, various procedures including three leg debridements, and i've had to learn how to walk two times already using a walker (actually it's hopping on my left leg because i still can't use my right leg), but hopefully i will be having my skin grafts next week and if it all goes well i may be home two weeks from now.
there's a bunch of other stuff i want to get into about my stay here, but i'm way tired and it's hard to type. my ring and pinky finger have been numb since after my first surgery. i don’t know how long they will stay that way, but they make it a mission to type on the laptop.
i miss so many things, but i will hopefully get to do them all after i get out. i won't be the one driving, though, for God knows how long.

Advice: Have a patient advocate with you in the hospital.

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

Thanks to espe for the source blog post.

Life rolls on: Living after a spinal injury

At 17, Jesse Billauer aspired to be a professional surfer. Then one day in 1996, while surfing off a Southern Californian beach, a wave knocked him into a sandbar and broke his neck, leaving him quadriplegic. Friends and neighbors raised money for Jesse's medical expenses. After a few years, when his medical bills were paid, he and his brother Josh decided to use the money to start an organization that would raise awareness about spinal cord injury as well as money for research.

"After my injury everyone kept saying, 'Well, life goes on,' and I thought, No, life rolls on," Jesse says.

So far, Life Rolls On has raised more than $1 million, says Josh, who serves as chairman of the board.

"When you've put all the effort in and see the smiling faces of people surfing who never thought they could even get into the ocean, you tend not to dwell on how much time and energy went into everything," Josh says.

Advice to people who have suffered great misfortune: Look for some way you can get your life to roll on through doing something you love.

Browse for similar stories in our index at the very bottom of this page, or read another story on a gritty athlete who became a fund-raiser.

Thanks to Stephanie Cajigal for the source story in the January/February issue of Neurology Now.

The same genetic lightning bolt: Rare DNA defects among some autistic and developmentally delayed children

The girls had never met, but they looked like sisters. There was no missing the similarities: the flat bridge of their noses, the thin lips, the fold near the corner of their eyes. And to the families of 14-year-old Samantha Napier and 4-year-old Taygen Lane, there was something else, too. In the likeness was lurking an explanation for the learning difficulties, the digestion problems, the head-banging that had troubled each of them for so long.

Several of the adults wiped tears from their eyes. "It's like meeting family," said Samantha's older sister, who accompanied her and their mother to a Kentucky amusement park last July to meet Taygen.

But the two families are not related, and would never have met except for their unusual bond: a few months earlier, a newly available DNA test revealed that Samantha and Taygen share an identical nick in the short arm of their 16th chromosomes.

Doctors are now learning that the symptoms of many children who are diagnosed as "autistic”"or "developmentally delayed" can be traced to the deletion or duplication of particular parts of the children's DNA. Some mutations are so rare that they are known only by their chromosomal address. For example, Samantha and Taygen are two of only six children in the world who are known to have defects in the 16p11.2 section of their DNA. (The most common mutation, on the other hand, is Down syndrome, which occurs in people with an extra 21st chromosome in addition to the usual pair.)

The affected children are typically the only ones in their families to have the disorder. So, many parents are searching out strangers who've been struck by the same genetic lightning bolt. They want solace, advice and answers to what the future might bring. From other families of children with the same chromosomal anomaly, they are seeking insight into their own. Sometimes what they find is unsettling; more often, in the emerging communities of the genetically rare, what they find is sustaining.

The genetic counselor at the University of Louisville Hospital put the girls' mothers in touch. The first time the mothers spoke, they talked on the phone for hours. When they met face to face, the questions continued.

Was Samantha sensitive to small noises? Even a cough or a sneeze can make Taygen shudder.

Samantha makes her mother unplug the clock every night because she can't stand its ticking.

Taygen is often sweet and then nasty in bewildering succession.

Samantha slaps you and then hugs you. You never know what is coming next.

It got easier, Samantha's mother told Taygen's mother. She has fewer tantrums now, and has learned her letters.

Advice to parents of autistic and developmentally delayed children: Consider getting help from an organization in Britain called Unique. They seek to link families with rare chromosomal disorders.

Browse for related stories in the index at the very bottom of this page, or read another story on the misdiagnosis of a rare genetic condition.

Thanks to Amy Harmon for the source story in the December 28 issue of the NY Times.

He's suing the device maker: Prodisc artificial spinal disk lawsuits

Calvin Timberlake, a 50-year-old former forklift operator who lives in Texas, had a Prodisc implanted in his spine four months after the US Food and Drug Administration approved it. Prodisc is an artificial metal and plastic spinal disk that is meant to relieve lower back pain by replacing a damaged disk between vertebrae of the spine. Calvin's surgeon was not involved in the clinical trial, though he apparently had invested in Prodisc. The Prodisc soon came apart, requiring an emergency operation to remove it. Calvin remains in extreme pain, and has to take medication to control the pain.

Calvin is suing Synthes, the Prodisc's maker, but not his surgeon, whom he does not blame for the problems.

Many of the surgeons who co-authored articles in peer-reviewed medical journals had major investments in the Prodisc, and at least some of them did not disclose their investments to the journal editors when they submitted their manuscripts for publication. They stood to profit financially if the Prodisc succeeded in the market, according to confidential information from a patient's lawsuit that was settled last year.

Advice to people who may have surgery to implant a medical device: Ask your surgeon's office manager if the surgeon has a financial stake in the device.

Browse for related stories in the index at the very bottom of this page, or read another Texas spinal surgery lawsuit story.

Thanks to Reed Abelson for the source article in the Jan. 30 issue of the NY Times.

The hospital's lab had mixed up her test: An unnecessary mastectomy and death

Last spring, doctors at a Long Island hospital gave a patient the news she had feared: cancer had been detected in her left breast.

She was only in her 30s, but she decided to act swiftly because breast cancer ran in her family. On May 25, she had a double mastectomy. The next day, she died from complications in the surgery.

As it turned out, she did not have cancer. According to the state Department of Health, the pathology report from the woman's surgery had found no tumors in her breasts. The hospital's lab had mixed up her test with another woman's.

Since that time, the hospital has taken corrective action, which has been deemed proper by the Department of Health.

Advice to surgery patients: Read the test results yourself and ensure the test results show your name and date of birth.

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

Thanks to Cara Buckley for the source story in today's New York Times.

I'm being Medevac'ed out a second time: US Army's medical care

I am a regular army captain - a social worker - currently stationed in Baghdad, Iraq. I have been here almost 13 months and getting ready to go to Landstuhl for possible surgery - I'm writing this from the CSH in Baghdad Internet Cafe.

Well, the horror story was when I first signed up for the Army as a private in 1983 I went to basic training at Fort McClellan, Alabama. Around the 4th week we went on bivouac and I developed a fever and heavy bleeding. They sent me to sick call (even though we were told NOT to unless we were on our death beds) and they took some tests. The fever wouldn't go down so they admitted me. Well, I was watching CNN from my hospital bed and apparently the hospital I was in had an incident... someone switched Argon Gas tanks with Oxygen Tanks and killed people in the operating room. Well, the hospital completely shut down and they stated (in the records I still own) that they felt I needed more tests to determine the cause of these problems but due to circumstances beyond their control, they were discharging me to the Troop Outpatient Clinic. Then I went back out to the Field, and things got even worse, more bleeding and continued high fever. Under the fear of saying anything I just continued my training.

When we were returning, that night in the shower, I fell down delirious, and the ambulance was called. They did a camera probe of my cervix area and found infection that had burst. They then wheeled a telephone over to me and told me to make my final phone call as it was not expected for me to live through this surgery. I called my mother. Next thing I remember was waking up and them telling me I had a total and complete hysterectomy, to include my ovaries.

I then recuperated and went through basic training a full second time and have not left the service completely for 25 years. That was March 1983 and it's almost March 2008 now. So I was unable to have children at age 19 and have been on HRT for 25 years. I have a 20-year Reserve retirement since I spent all that time in the Reserves and National Guard but have a total of 10 years active duty service. I became a social worker, direct appointment into the medical service corps 04/06 and have three more years to go.

Well, 16 years ago my ex-husband and I decided I should get implants. I loved them and they have been great all these years. Well, last July a series of rockets came into our FOB Falcon and I ran with a large box in my arms to the bunker, but, tripped and fell... causing the box to smash my left breast. They sent me to Landstuhl to have an MRI and the physician/radiologist stated that it was ruptured. Then a few hours later another doctor said that it was not ruptured. They differed in opinion and I was sent back to FOB Falcon where I didn't notice anything but the usual stinging pain in my left breast they told me was just "nerve damage" from falling on it.

Then a few days ago I noticed actual jell like blob underneath my bra strap heading south to my stomach area. They sent me here to the CSH and the doctor blatantly stated, "Since these are such a problem for us we are going to recommend they be removed." She made it sound like I was causing problems with the army medical system so they will simply remove these things. What she didn't realize was that the Army misdiagnosed the rupture 6 months ago...and it was not my fault but theirs that I'm being Medevac'ed out a second time. It was like she was disgusted that I was causing such a "non-military, non-weapon caused injury" to take up her resources.

So... now I'm waiting to fly to Landstuhl today or tomorrow to have them crassly remove my implants and NOT replace them with new saline implants. What a nightmare. I am a social worker and I don't even know how to negotiate the Army medical system to advocate for my own medical care. It's like this giant, huge blob of permanently compartmentalized disinterested individuals... much worse than a HMO like Kaiser Permanente. I feel like a number and not a human being where my thoughts on my breasts make a difference.

I have had the breast implants for 16 years and they were fine until the friggin' rocket made me fall on them... Are they going to make a law about women having breast implants in the army? I don't think so...

Anyway, thanks for letting me vent about this... The other thing was they gave me a copy of this medical record from the ultrasound I had here at the CSH and there is incorrect information all the way through the record...dates, time frames, etc. Nothing I said was placed into the medical record. It makes me frustrated and scared to face what is next for me at Landstuhl. I feel they already once removed all my female parts and now they will take these breast implants...

-Diana M. Colon LCSW, PIP
CPT, MS
Licensed Clinical Social Worker
FOB Falcon, Iraq

Browse for related stories in the index at the very bottom of this page, or read another Iraq veteran's story.

Not until 2006: Lawsuit on interpretation of Paxil's suicide risk in drug trials

An inappropriate analysis of clinical trial data by researchers at GlaxoSmithKline obscured suicide risks associated with paroxetine, a profitable antidepressant, for 15 years, according to court documents released last month. Not until 2006 did GSK alert people to raised suicide risks associated with the drug, marketed as Paxil and Seroxat.

An analysis of internal GSK memos and reports, which were released to US lawyers seeking damages, suggests that the company had trial data demonstrating an eight-fold increase in suicide risk as early as 1989. Harvard University psychiatrist Joseph Glenmullen, who studied the papers for the lawyers, says it's "virtually impossible" that GSK simply misunderstood the data - a claim the company describes as "absolutely false."

Glenmullen's report rests on documents obtained by lawyers in Los Angeles, who are bringing around 30 cases against GSK linking suicides and suicide attempts to the use of Paxil. The report was under seal at a district court in Sacramento, California, until 18 January, when the judge agreed to make parts of it public.

The analysis focuses on the "washout" phase preceding a trial, when subjects stop taking most or all medications to avoid confusion with results from the trial itself. Because the washout occurs before patients randomly receive either the drug or the placebo control, adverse events during this time can't be attributable to the trial and so are seldom if ever included in final results.

However, GSK researchers submitting data on Paxil to the US Food and Drug Administration in the late 1980s and early 1990s included suicides and suicide attempts from the washout period in the results for the placebo arms of trials, but not from the Paxil arms. Glenmullen alleges that these extra "placebo" suicides negated suicides attributed to Paxil in the trials, making the drug appear safer than it really was. He says that if the washout results had been excluded, the data would have showed that Paxil increased eight-fold the risk of suicidal behaviour in adults.

GSK spokeswoman Mary Anne Rhyne says inclusion of the washout data "was intended to present the full picture of events that occurred in all phases of the clinical trials - starting from the time patients were enrolled, before they were randomised." She says that even without the washout data, Paxil still came out as safe as the placebo in this trial. She accused Glenmullen of incorrectly analysing the data to reach the opposite conclusion, but didn't respond to a request for numerical proof that Glenmullen's verdict was wrong.

Glenmullen suggests that the FDA would have acted differently had the use of the washout data been made more explicit. Rhyne says that material still under seal shows the FDA to be fully aware of how the washout data was being used. But Glenmullen quotes Martin Brecher, the FDA official who reviewed Paxil's safety, as agreeing during a pre-trial hearing that the use of the washout data was "scientifically illegitimate."

Independent researchers say it was wrong to use washout data as GSK did. "I can't imagine circumstances in which it would be appropriate," says Bruce Psaty of the University of Washington in Seattle.

Advice: Weigh the tradeoffs carefully in deciding whether to take antidepressants.

Browse for similar stories in our index at the very bottom of this page, or read an antidepressant adverse drug reaction story.

Thanks to Helen Haskell for sharing Jim Giles' source story in the Feb. 6 issue of the New Scientist.

Even at low dosage: Fatal overdose of prescription drugs for Heath Ledger

The actor Heath Ledger died accidentally from "the abuse of prescription medications" – six kinds of painkillers, sleeping pills and anti-anxiety drugs – according to the New York City’s Medical Examiner's office. Heath, a star of "Brokeback Mountain," had been found dead in his SoHo apartment on Jan. 22.

The narcotics oxycodone (the main ingredient in OxyContin) and hydrocodone (the main ingredient in Vicodin), and the drugs diazepam (Valium), alprazolam (Xanax), temazepam (Restoril), and doxylamine (in certain sleeping pills and cold medicines) were found in his system.

"It's the combination of the drugs that caused the problem, not necessarily too much of any particular drug," said a spokeswoman for the Medical Examiner’s office.

Heath's father, Kim Ledger, said "we learned today the combination of doctor-prescribed drugs proved lethal for our boy. Heath's accidental death serves as a caution to the hidden dangers of combining prescription medication, even at low dosage."

Dr. Vatsal Thakkar, a psychiatrist at New York University Medical Center voiced a concern that some of the drugs Heath had taken could have built up in his body.

Advice to those taking several prescription drugs: Check here (for free) to ensure they do not have dangerous drug-drug interactions.

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

Thanks to James Barron for the source story in today's NY Times.

An armed guard told him his kidney had been removed: Theft ring for kidney transplants

As the anesthetic wore off, 25-year-old Naseem Mohammed said, he felt an acute pain in the lower left side of his abdomen. Fighting drowsiness, Naseem, a day laborer, fumbled beneath the unfamiliar green medical gown and traced his fingers over a bandage attached with surgical tape. An armed guard by the door told him that his kidney had been removed.

He was the last of about 500 Indians whose kidneys were removed by a team of doctors running an illegal transplant operation, supplying kidneys to rich Indians and foreigners, police officials said. A few hours after his operation last Thursday, the police raided the clinic and moved him to a government hospital. He has been recuperating in a Gurgaon hospital.

He had had no idea that it was possible to sell a kidney. He had been picking up odd jobs in Delhi for the past two years and had been sending money to his family in Gujarat.

Two weeks ago, he was approached by a bearded man as he waited at the early-morning labor market by the train station. The man offered him a generous deal: six weeks of painting work, with free food and lodging. He was driven four or five hours, to a remote bungalow, where he was placed in a room with four other young men, under the watch of two armed guards.

"When I asked why I had been locked inside, the guards slapped me and said they would shot me if I asked any more questions," he said. The men were given food to cook and periodically nurses would take blood samples. One by one, they were taken away for operations.

"They told us not to speak to each other or we would pay with our lives," he said. "I was the last one to be taken."

Advice to people needing a kidney: Explore kidney sharing, as described here recently.

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

Thanks to Amelia Gentleman for the source article in the Jan. 30 issue of the New York Times.

Pimp C's death from an overdose of cough syrup

Influential Southern rapper Pimp C died of an accidental overdose of a combination of drugs he had named in his lyrics - codeine and promethazine, the county coroner's office ruled Monday.

The drugs are key ingredients in "syrup," a narcotic of choice in Southern rap circles that was most famously celebrated by Three 6 Mafia and Pimp C's group Underground Kingz in the 2000 single "Sippin' on some Syrup."

The coroner's office said Pimp C had sleep apnea, which causes people to stop breathing for up to 30 seconds at a time while sleeping. That illness combined with large amounts of prescription-strength cough syrup is what killed the rapper, the coroner's Capt. Ed Winter said.

DJ Screw, another influential figure in the Texas hip-hop scene, died of a heart attack in 2000 after a reported overdose of codeine-laced cough syrup.
Pimp C, born Chad Butler, was 33 when he was found in his bed Dec. 4 at the upscale Mondrian hotel in West Hollywood. The coroner's office said his body was decomposing when it was found.

With partner-in-rhyme Bun B, Pimp C was half of the pioneering Port Arthur, Texas-based rap duo UGK. The group's self-titled CD topped the Billboard charts last year. Pimp C had been working on a solo effort before he died.


Advice for those who need to use recreational drugs: Use safe, legal ones in moderation.

Browse for related stories in the index at the very bottom of this page, or read a self-administered prescription drug overdose story.

Thanks to the Associated Press for the source story today.

Fast cash: Adverse effects of drug trials on human guinea pigs

Journalist Carl Elliott interviewed several human guinea pigs for a story in the New Yorker. One Iraqi man, living in Canada, began doing trials when he emigrated to Canada. He was living in a hostel and needed money to buy a car. A friend told him, "This is fast cash." When he enrolled in an immuno-suppressant trial at a Montreal-based subsidiary of SFBC, he found himself in bed next to a subject who was coughing up blood. Despite his complaints, he was not moved to a different bed for nine days. He and eight other subjects later tested positive for tuberculosis.

A human guinea pig in another drug trial had an even grimmer outcome. Traci Johnson, a previously healthy 19-year old student, committed suicide in a safety study of Eli Lilly's antidepressant Cymbalta in January, 2004. (Lilly denies its product was to blame.)

Alan Milstein, a lawyer in Philadelphia who has represented several human subjects, says about human guinea pigging: "This is not something you or I do. This is something the poor do so that the rich can get better drugs."

Advice to human guinea pigs: Read the fine print carefully to learn your rights.


Browse for related stories in the index at the very bottom of this page, or read another human guinea pig story.

Thanks to Carl Elliott for the source story in the Jan. 7 issue of the New Yorker.

If he'd give me a few good years, I'd work on hospital-acquired infections

Bill Percival of Greenville, South Carolina picked up five staph infections while in a hospital for cancer treatment. As he clung to life, he made himself a promise.

"I told my doctor that if he would give me a few good years, I'd spend them working on hospital-acquired infections," said the 64-year-old retiree.

He kept his word. Since his recovery, he has spent the past few months attending meetings of a group overseeing the reporting of such infections.

On Friday, the S.C. Department of Health and Environmental Control released its first report showing rates at hospitals around the state for two types of infections — those associated with the placing of a catheter deep into major blood vessels, and those associated with surgical sites. In this first report, the latter category includes only heart-bypass surgeries and hysterectomies.

DHEC will collect more data and will issue another report later this year. Other procedures will be added to the reports over time so the public can have an idea of how a hospital is doing overall.

"In the long run, we hope that we get the reports to the point that they are a useful guide to healthcare consumers so that you can look and see where you're more likely to be safe if you have to go in a hospital," said S.C. consumer advocate John Ruoff, who lobbied for the infection-reporting legislation.

"People need to be knowledgeable about this, and if these reports can increase public awareness of the danger of health care-associated infections, antibiotic-resistant infections in hospitals and in the community, that is a big help," said Helen Haskell, who helped form Mothers Against Medical Error after her son died in a hospital.

Sen. Ralph Anderson, D-Greenville, lead sponsor of the infection-reporting bill, said the requirement will get hospitals to work harder to lower infections.

Dr. Shawn Stinson, who is in charge of clinical quality and patient safety at Palmetto Health, said, "I have kids, and if they get sick and end up in somebody else's hospital, I want zero."

Advice: Join the efforts of citizens in many other states to file and pass state legislation to require the reporting of hospital-acquired infections.


Browse for related stories in the index at the very bottom of this page, or see a short video of one person’s hospital infection story.

Thanks to Czerne Reid for the source story in today's South Carolina state.com.

Two compatible pairs: Paired kidney exchange

Thanks to a new program, a Georgia man and a Bessemer, Alabama, woman who both expected to wait many years for kidney transplants received new organs. More than a year ago, they were the first patients to receive a paired kidney exchange that matches a patient who has a willing, healthy living donor — sister and fiancé, respectively, in this case — with another donor and recipient, forming two compatible pairs.

The donors and recipients: Recipient James Thorn Jr., 38, of Bainbridge, Georgia, and his sister, Cynthia Rayburn, 42, of Jefferson County; and recipient Dwana Lewis, 29, and her fiancé, Alex Caldwell, 40, both of Bessemer. In the exchange, Cynthia donated to Dwana and Alex donated to James.

This was the first such procedure performed at the University of Alabama. All patients were recovering well and are listed in Good condition, transplant surgeon Alex Hawxby said. The recipient patients James and Dwana were to be discharged from the hospital within a few days while their immune-suppressing medications were being adjusted.

In such a procedure, both pairs of patients initially are kept anonymous from each other. When admitted to the hospital, they are assigned to different nursing units, go to different pre- and post-operative areas and return to separate nursing units afterwards. Their families wait in different areas, also.

To prevent any possibility that one of the donors might back out of the operation at the last moment, all the patients are simultaneously put under anesthesia.
Matching the appropriate incompatible pairs is a complex undertaking that requires additional staff and operating rooms, and a carefully choreographed operating room process, according to Dr. Eckhoff, who is director of the UAB Division of Transplantation. "The UAB Transplant Program has committed considerable resources for this program because of its great potential to provide relief to many of our patients," he said.

National Kidney Foundation President David G. Warnock, who is director of the UAB Division of Nephrology, noted: "This development marks an important milestone in the ongoing growth of the UAB transplant program. It will broaden the choices of patients with chronic kidney disease who are needing living donors for transplantation."
Nationally, the number of donated kidneys coming from living donors has increased dramatically in the last decade, as kidney-failure patients realize that the number donors available through organ banks is not rising by much. Family members and other loved ones may want to volunteer to donate one of their kidneys, but frequently are turned down for medical reasons. Others are told they cannot donate to their relative or friend because they have tissue characteristics that are incompatible or because the patient's blood contains proteins that would cause the kidney to be rejected.

UAB transplant doctors hope the Living Incompatible Kidney (LINK) transplant program will reduce long waiting times and help ease the organ shortage. Dr. Hawxby said, "As many as a third of patients are incompatible with their potential living donors. With the new paired kidney exchanges through LINK, a donor freely offers a kidney to a stranger in order to get their own loved one transplanted by another donor with a reciprocal situation. Many dialysis patients are on our transplant waiting list, which is why that list now numbers more than 2,400, with waiting times for transplants of typically four to five years and sometimes more."

Several more paired kidney exchanges are being evaluated.

Drs. Hawxby and Mark H. Deierhoi led James' operation, and Drs. Devin Eckhoff and Harry Sun led Dwana's surgery.

Advice to those needing a kidney: Look into innovative programs of kidney exchange like this one.

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

Thanks to Hank Black of the University of Alabama for the source story.