To be their own voice: Early detection of breast cancer

Rep. Debbie Wasserman Schultz held a press conference yesterday in a small dining room at the U.S. Capitol building in Washington, DC to announce legislation for a national campaign to educate young women and their doctors on the need to start early on breast cancer detection. Her bill, the EARLY Act ("Education and Awareness Requires Learning Young"), would provide $9 million annually. She says it "would encourage young women to be their own voice – to speak up for themselves and know when they need to go to their doctor. The EARLY Act will teach both young women and medical professionals alike about risk factors, warning signs of breast cancer and predictive tools such as genetic testing that can help women make informed decisions about their health."

The glamorous 42-year-old congresswoman had discovered a breast lump through self-examination in December 2007. Since then, she has undergone seven major surgeries. She learned that her Ashkenazi Jewish ancestry places her at greater risk for the cancer to spread, so she chose to have a double mastectomy, and the removal of her ovaries.

She had kept the illness private during her re-election campaign, not wanting the illness to "define" her.

After her press conference, she had another important message to convey: "I'm healthy, and I'm through it."

She had to make some very tough choices. Maybe her most heroic choice was to go public and to sponsor legislation to protect other young women. That's why she's a patient advocate hero.

Advice: Like her, help others who face the difficult healthcare choices that you've had to confront.

Read another story of a vigorous and imaginative breast cancer survivor. Thanks to Richard Leiby for the source story in today's Washington Post.

Most of them love it: A surgeon's use of humor

Here's Nurse G.P.'s letter to a nursing advice columnist:
"Dr. Sam," a good-natured general surgeon in our same-day surgery clinic, enjoys chatting with patients before procedures. To put them at ease, he regales them with humorous stories, and most of them love it. Last week, Dr. Sam told several of his favorite stories to a patient who was clearly anxious. After he left, she confided to me that she was still dreading surgery. "I had some questions that I never got to ask because he was too busy being a comedian," she said.

Advice to patients about to undergo surgery: Bring a written list of your questions to hand to the doctor or nurse, in case it's hard to get a word in edgewise.

Read a story about physicians' attempts to build rapport with patients.

Thanks to Susan Salladay, the nursing advice columnist, for the source article in the July 2008 issue of Nursing2008.

While she lay in bed: Insurance denials for pre-existing conditions

"My mother died very suddenly and very young," her adult son told AARP Bulletin last fall.

Ann Dunham died in 1995 at age 52 after working as a consultant for the U.S. Agency for International Development, the Ford Foundation and Women's World Banking. She taught her son an important lesson about access to health care. "She'd go from contract to contract and would be able to buy health insurance [only] when she got a new contract," her son said. "When she got sick, she had just signed up for a new job, a new contract, and she had a lot of arguments of whether this was a pre-existing condition of which she had no knowledge whatsoever….As someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make sure those companies stop discriminating against those who are sick and who need care the most."

This is more than wishful thinking on the son's part, as he is now president of the United States – Barack Obama. As he said frequently during the presidential campaign, "These are not abstractions for me."

Advice: Fight for health insurance for all.

Read a story about a pre-existing condition.

Thanks to Jim Toedtman for the source article in the March issue of the AARP Bulletin.

40th Birthday in the Kingdom: A fatal misdiagnosis by an EMT

Gina's story [the names are changed]:
My older sister was 39, almost 40, and lived in Beaufort, South Carolina, on St. Helena's Island. My kids called her Aunt Mell. One day, we had to call for emergency help for her. The firemen came first, then two EMTs (emergency medical technicians).

The emergency medical technicians (EMTs) tried to help her up, but couldn't. At that time, at 5:34 am, her pulse was 126, which was regular; she just needed oxygen. They decided not to treat her until she got up herself. One guy thought she was faking it. With a lack of oxygen, you act a little funny…But they said, If you don't get up, I'm going to call the policeman! They wouldn't let me intervene.

So they didn't treat her for some time – for 18 minutes. I was praying for everything to be all right. I was in shock. She was my big sister, and she depended on me to come through for her. That morning, when she really needed me, I felt so helpless. I tried to help her by letting them help her.

He had his boots on her arm to help her stay down, or whatever.

She went into cardiac arrest. The one EMT guy just flipped out, called her by name, and then he knew she was gone. The EMT guy tried to work on her. "We have no time to waste," he said. They tried to revive her for 15-20 minutes, but I knew she was gone already. So instead of having her 40th birthday party with us, she had it in the Kingdom [of God].

I wanted an autopsy. The nurse said, "We have to do an autopsy; who do you want to take the body? I have to talk to a family member." But they acted like there was a mix-up, like one of my other siblings had told them something different. They went ahead and had a funeral service director pick her up, so there was no autopsy.

But their mistake was in the record anyway, so we were able to find out the truth. Most people thought she had died from an asthma attack, but I saw, and I knew better. I never thought I'd witness a medical team that didn't give help. It was such a nightmare – I thought I was dreaming.

I went through all of this in a deposition with a lawyer. The EMT guy was really mean; he had anger management issues. My attorney picked up on that, and said, He's a very angry man! But nothing happened to that man.

My mom was devastated by this. She spoke at the deposition, and poured her heart out. That brought her peace. She knew the truth, but was in too much pain to talk about it. The stress from all that shortened her life.

I haven't told anyone about this for ten years, until now.

Gina's Advice: If the EMTs don't seem to be helping your family member in an emergency, call 911 again, or call the police. Act right away!

Read another story of a 911 call gone awry.

Thanks to Gina for telling her story over the phone. A fuller account can be found in the October 2004 issue of the Journal of Emergency Medical Services, in Volume 29.

Motivated to advocate for quality improvement: “Quality Care Saves Lives” Event at the Massachusetts State House

This is a transcript of my introduction this morning’s event at the Massachusetts State House:

My name is Ken Farbstein and I serve as President of the Consumer Health Quality Council.

The Consumer Health Quality Council consists of a diverse group of people who have suffered, or whose family members have suffered, health care errors. So we are strongly motivated to advocate for quality improvement and patient safety. The group has been active since 2006.

Today four Council members will be sharing their stories: John McCormick from Pembroke, Jen Tosca from Kingston, Robena Reid from Acton, and Lucilia Prates, our founder and former president, from Arlington. Their video stories serve as powerful examples of those who are taking an active role in improving health care quality in Massachusetts. I would also like to acknowledge all of the Consumer Council members who are here today. Please stand up. Thank you.

The Council Members have been working with students at Boston University School for Public Health to make these video stories. We want to thank Dan Dao, Daniel Lau, Elizabeth Romero, and Nandini Ravishankar for their work.

If you are interested in learning more about the Council, please feel free to pick up information at the table or speak with me or any other member of the Consumer Council or Kuong Ly of Health Care For All.

You will hear some individual stories today, just a few of the many – too many -- stories across Massachusetts that make clear why we need to improve health care quality.

The short videos appear here.


John McCormick's Advice: You can insist on having a more senior doctor see the patient if you are unsatisfied with the resident's care.

See another video from Health Care for All.

He'd sailed through heart surgery: Failure to rescue

Six-year-old Christian Padilla of Fort Wayne, Indiana had sailed through a successful heart surgery to correct a birth defect in 2005, only to die days later from the preventable complications that characterize a failure to rescue case.

"The nurse didn't recognize his symptoms as something of concern," said the boy's father, Jim Padilla, 38, an assistant professor at a local university. "She described him in her medical notes as 'acting fidgety.'"

In reality, Christian was unconscious and suffering seizures as a result of the brain swelling that killed him, said his father, who received a $1.25 million combined settlement from the Indiana Patient's Compensation Fund and the hospital, according to the Indiana Department of Insurance.

It's not clear whether a drug reaction or another problem caused the swelling, said Padilla, who was at his son's side, frantic, throughout the ordeal.

"We got to the point where I had asked multiple times: 'Should he be sleeping so long?'" he said. "Over and over, I was told this was normal.'"

Such a failure to make a diagnosis in time, or to provide treatment in time, is called "failure to rescue."

The nurse's failure to notice Christian's subtle but increasing symptoms of distress is a key element of this measure of how well hospitals respond to unexpected complications — or don't, said Dr. Samantha Collier, chief medical officer for HealthGrades. "As an example, somebody comes in for an elective surgery like a knee replacement and turns up with vague symptoms, like shortness of breath, and the next thing you know, somebody dies," explained Dr. Collier. "It's obvious that if you go in for a knee surgery, you shouldn't die."

The term "failure to rescue" refers to cases where caregivers fail to notice or respond when a patient is dying of preventable complications in a hospital. Between 2004 and 2006, failure to rescue claimed more than 188,000 lives, amounting to about 128 deaths for every 1,000 patients at risk of complications, according to a report from HealthGrades, a health care ratings organization. That's more than any other measure found in the 2008 report, and indeed in five consecutive annual reports by Health Grade.

Advice to family members of a hospitalized relative: Insist that a Rapid Response Team help your relative if you see them declining rapidly in the hospital.

Thanks to JoNel Aleccia for the source story in MSNBC, and thanks to Helen Haskell.

$9.8 Billion of its own cash: High price of drugs

The big news today is of Merck’s acquisition/merger with Schering Plough, for $41 billion. Natasha Singer writes in today's New York Times that "Merck will use $9.8 billion of its own cash for the purchase." Hmmm, who did all that money come from?

Linda R. has a hunch, and a personal interest. Her letter, written a few days before the Merck/Schering story:

The drug companies use the high cost of current drugs to research new drugs that aren't even necessary. It's all a big money-making scheme. It's, "Let's see if we can come up with a drug for hangnails", and then "here's how we'll market it." Then they push the idea down consumers' throats with TV and magazine ads and push them on the doctors with salesman and samples. It all fuels big drug company profits. And when Congress or anyone asks, "Why are these drugs so expensive?" The drug companies say, "It's the cost of research!" Research for what? For another sleeping pill? For another drug for toenail fungus or mood swings. How many pills do we need out there for common maladies? It's all a scam!

This is what I'd like to see done. I'd like to see a watchdog committee go in and see just how much it costs to make a variety of 2nd-tier and 3rd-tier drugs. See how much the actual cost of the drug itself is. And when we have a National Health Plan in place, the government will only pay the actual cost of the pill. Let philanthropists fund research for important, groundbreaking discoveries and cures! Let the drug companies get out there with their hat in their hand, like every one else instead of taking it out of lower income pockets.

And then there are the patent laws. Why are drug companies allowed to have 5 and 10 year patents on new drugs? Back in 2001 when I was uninsured, I had to pay the $100 for a month's supply of a drug that an insured person only had to pay $20 or less for. It was part of what bankrupted me. And now there are other ways to get prescriptions at insurance coverage cost, but are people being actively informed? About stores like Costco that have a special program for uninsured people so they can buy their prescriptions for the same price as insured people? From experience I can tell you the answer is "No." It's only becoming known by word-of-mouth. I wonder why...

This article says it all much better than I can ---- "The Truth About the Drug Companies." This article tells it all.

I understand that the government doesn't want to oversee big business to the point of screwing up the capitalist system. However, government officials need to remember what the word "government" means: "Government is the body within any organization that has the authority to make and the power to enforce laws, regulations, or rules." The U.S. government needs to step up to the plate and start making new laws and enforcing new laws that will protect the American people from greedy and disreputable capitalism that directly affects Americans' quality of life.

My apologies, but this is what gets me on my soapbox! Thanks for helping. Go get 'em! One step at a time! One law at a time!

Advice: Help to pass one law at a time.

Read a story about high drug costs.

With significant potential financial gain: Unnecessary cardiac surgery

Father John Corapi went to Dr. M. for a diagnosis, and the doctor recommended surgery. Father Corapi then got second, third, fourth and fifth opinions, all of which disagreed with Dr. M.'s diagnosis and recommendation for cardiac surgery. He was so struck by these additional opinions that he went to the FBI.

The FBI performed a three-month investigation, interviewing medical staff at the local medical center in California, other patients of Dr. M., some of his colleagues, Dr. Gerald Rogan, and outside cardiologists as far away as the Cleveland Clinic. The FBI produced a 67-page affidavit that led to a search warrant authorizing an FBI raid on Dr. M.'s office. The affidavit contained a description of Dr. M.'s interaction with patients: the doctor bullied patients, and scared them. He would consistently tell patients, many of whom had ambiguous symptoms and no history of coronary disease, that he needed to perform an angiogram to determine whether the patient required invasive treatment. (An angiogram is a diagnostic test that takes X-ray pictures of the heart arteries, highlighted by an injected dye, via a soft catheter tube that the surgeon threads into the heart from an incision in the patient's groin. )

If the angiogram failed to document treatable disease, or as was frequently the case with Dr. M., was unreadable, he would perform an intravascular ultrasound, which at the time was new, and unfamiliar to many cardiologists. By improperly setting the gain on the ultrasound too high, Dr. M. guaranteed the appearance but not the reality of significant arterial blockages. Dr. M. would then lean over the supine patient and tell him in dire tones that without immediate bypass surgery, he would die. In such a stressful situation, few patients were sufficiently confident, rational, or sophisticated to ask for a second opinion. For the few who did, Dr. M. typically referred the patient to another doctor in his practice, who would confirm the diagnosis, relying on Dr. M.'s recommendation, and perform the surgery.

The California Medical Board sought a restraining order against the two doctors, finding that:

"Both have fraudulently misrepresented the findings of tests to induce and/or scare patients into having unnecessary surgeries or interventions. At best, this can be viewed as incompetent and/or grossly negligent as well as dishonest and corrupt. [They] misled, lied to or attempted to frighten patients into consenting to invasive coronary surgical procedures, at significant risk to the patient and with significant potential financial gain."

Advice: Work to reform the payment system that rewards unscrupulous doctors for unnecessary and dangerous surgery.

Read another story about unnecessary bypass surgery.

Thanks to Drs. Gerald Rogan, Frank Sebat and Ian Grady for the source, Disaster Analysis Redding Medical Center Congressional Report, June 1, 2008, and to Helen Haskell.

An incentive to do the wrong thing: A Phenergan injection lawsuit

Diana Levine is a guitarist, age 63, living in Vermont. She went to a clinic, complaining of pain from migraine headaches. A doctor there chose to inject her with Phenergan, an anti-nausea drug made by Wyeth Pharmaceuticals. Though the drug label permitted the drug's intravenous injection, it stated that "extreme care" was needed to avoid hitting an artery, because "likely" complications included "gangrene requiring amputation."

Unfortunately Diana immediately developed gangrene, and the musician's right forearm had to be amputated. She sued Wyeth, and won. The U.S. Supreme Court upheld the decision in a ruling today, by a vote of 6 to 3.

Diana’s case is especially significant because the Supreme Court's ruling enhances the rights of injured patients to hold drug makers responsible.

This case also implicates our payment system. Doctors are paid well for administering injections, and are not paid for prescribing oral drugs, for example, that usually offer available alternatives. The reimbursement system provided an incentive to do the wrong thing, and Diana is suffering for it.

Advice: Consider a lawsuit if a medication error causes you significant injury.

Read a story about a migraine sufferer.

Thanks to Jess Bravin; and Joan Biskupic and Julie Appleby for the source articles in today's Wall St. Journal and USA Today, respectively.

Her law came too late for her: Insured medical leaves of absence

Michelle Morse was a full-time student at Plymouth State University in New Hampshire. Michelle was found to have colon cancer in 203, and her doctor recommended she take a leave of absence for chemotherapy.

But if she took a leave, she would lose her insurance. She stayed in school while undergoing her treatments, and at the same time campaigned for a law to let students stay on their parents' health insurance while on medical leave from college. Congress passed the law last year, but it came too late for her: she died in 2005.

Would it have made a difference if Michelle had been able to take a leave and focus on treatment? "We'll never know," said her mother, AnneMarie Morse.

"It was horrible," AnneMarie said of her dealings with the insurance companies. When one executive told her indignantly that the company had already paid out a lot of money for Michelle, she responded, "I would give my life for you not to have to pay one cent for my daughter."

Michelle is a hero for using her anger at the insurance system to advocate a law that now protects people in her situation.

Advice: Get busy as a citizen, like Michelle, to push the reform of our screwy healthcare insurance system.

Read a story showing the need for reform of our payment system.

Thanks to Nicholas Kristof for the source article in the March 1 issue of the NY Times.

Ten years ago, she had one year to live: Mistrust of doctors’ opinions

Dr. Abigail Zuger's story:
A patient and I have been conducting an increasingly existential dialogue on these subjects for years now – not easy to sustain in 15-minute segments, even less as we both realize we are getting exactly nowhere.

She has untreated HIV infection with an immune system now so dysfunctional that it is quite extraordinary for her to be still in the pink of health.

Which she is, no doubt about it. She feels fine. At some point in the past a health care professional hazarded that she had a year to live, and after 10 years she lost all faith in expert predictions.

From my own long experience with patients just like her, I know the very unpleasant future that surely awaits her. She has no interest in letting my memories drag her across the river. She only knows she feels fine. Furthermore, she has tried all the drugs that will change her risk, and every one of them makes her feel sick.

We have tossed this all around many times, and each time she enumerates the same paradox: I, with my gloomy warnings and my new ideas for medication, am trying to make her sick. She is determined to stay healthy.

Healthy to infect others, I point out. Healthy to leave her son an orphan. Healthy until she gets sicker than anyone needs to be.

Healthy in the here and now, she insists. Healthy not to throw up every morning, healthy enough to go to work, pay the bills and buy the kid a set of drums. Healthy to feel like herself.

Clearly, there is health, and there is health, and sometimes the twain just will not meet. Meanwhile, every time I look at her lab reports I feel a little sick.

When epidemic infection came to town in the old days, it was usually clear who was sick and who was well. Yet in the midst of New York's typhoid outbreaks of the early 20th century, one of the healthy was Mary Mallon, "Typhoid Mary," the cook who carried the germ, infected dozens of others, yet never got sick.

Health is as hard to define as love or happiness, and even harder to trap and keep.

Advice to victims of medical errors: Remember that even after you've had a doctor make a mistake, doctors are still right much more often than they're wrong.

Thanks to Dr. Abigail Zuger for the source article in the Sept. 30 issue of the New York Times.

The nurses threw him out of the room: Joyful living with Multiple Sclerosis

Debbie Purdy married well, to a joyful Cuban jazz violinist named Omar Puente. It was 1995 – the same time she was diagnosed with multiple sclerosis. She has primary progressive, rather than relaxing-remitting, MS, meaning that her condition is inexorably worsening.

They have adjusted together to the changes in her body. If she had not been in a wheelchair, if her hands had not been shaking, if she had not been speaking matter-of-factly about things like loss of bladder control, the painful swelling in her feet and how hard it was for her to brush her teeth, it would have been difficult to believe that she was ill at all. She is that joyful.

Not long ago, a team of nurses came in to install the hoist that helps her in and out of bed. Her husband Omar “was laughing,” she said. “The nurses threw him out of the room when we were trying it out, because he was acting like it was a sex toy.”

Omar says, “I’ve seen the whole process, from when she was a very strong woman with a wonderful big bottom and strong legs, to using a walking stick to using a wheelchair. She is still articulate and enthusiastic and full of life.”

Advice: Live with humor, as joyously as you can with the time you have, as Debbie and Omar do.

Read a story of a very different way a person is living fully with multiple sclerosis .

Thanks to Sarah Lyall for the source article in today’s NY Times.

Deamonte, Barack, and Valentine's Day

The first month of the Obama Administration is nearly complete, and it has been a great month for public health, with four big accomplishments.

1.Four million (or 11 million, depending on how you count it) more poor children will have health insurance, thanks to the expansion of the SCHIP program. That will save many children’s lives, ending disgraces like the death of Deamonte Driver, who died from the lack of dental and medical care.

2.More doctors will use electronic medical records (EMRs). As of now, the stimulus bill will provide $16 billion (in the Senate bill) to $17 billion (in the House bill) in incentives for Medicaid and Medicare providers to adopt health information technology, according to a comparison appearing in the online Wall St. Journal on Feb. 10. There are many likely benefits, depending on the technology. One likely result is to make test results more immediately accessible to doctors, speeding their diagnoses and shortening patients' suffering, among many other benefits. In my own case, the electronic availability of an MRI enabled my ENT doctor to promptly provide me a diagnosis and a prescription. That saved me weeks of misery until another MRI could be done (and a saving to my insurer, since the test only needed to be done once).


3.The extension of unemployment benefits will add some peace of mind for many newly laid-off workers. Reducing that stress should improve mental and physical health for many people.

4. Single working mothers, many living in or near poverty with their children, will get higher wages because of the passage of the Lilly Ledbetter Act to reduce wage discrimination. Poverty is the biggest risk factor for poor health, so higher wages will improve health for poor and near-poor families.

Advice: Be glad that our President is putting our money where his heart is.

One of those things: A staph infection after spinal fusion

A story from Jeff Knott:
My publisher tells the story of going into a hospital for a spinal fusion procedure known as a lumbar laminectomy (an open decompression). He needed help due to severe pain caused by neural impingement. The surgery is designed to remove a small portion of bone over a nerve root and/or disc material from under the nerve root, giving more space for movement.

At admission, he was in generally good health. On the morning following the surgery, the patient felt comfortable and was encouraged to see if he could sit up, which he could thanks to the morphine blocking any discomfort. However, by that afternoon he began to run a fever and began hallucinating. The nursing team was attentive and eventually called in a doctor (not the admitting physician – he had gone skiing in Colorado) to evaluate the situation. Nurses and techs drew blood and administered fever-lowering medication.

The test results came back and the doctor returned to inform the patient that he had contracted a staph infection – most likely during or just after the surgical procedure. That explained the fever, the hallucinations, the swelling and redness around the wound, and the patient's irritability.

Antibiotics were started and after four additional days in the hospital, the patient was wheeled to his car. In addition to the routine bill for the surgery and hospitalization, there was an increase in the total by four additional and unexpected days of hospitalization – none of which were caused by the patient, but surely to be paid for by the patient and his insurance company.

The patient returned to the orthopedic surgeon's office for check-ups during the weeks that followed. He met with the doctor a couple of times, discussed the success of the surgery, the reduction or near-elimination of pain, and rehabilitation. But not once did the doctor bring up the staph infection. When the patient mentioned it, the discussion was brushed off as "one of those things" that can happen in a blue moon. It was obviously an embarrassment – but it didn’t slow down the flow of patients through his office.

Advice for people who have suffered a hospital-acquired infection: Ask the surgeon what s/he would do differently next time to prevent an infection. And don't pay that part of the bill.

Read a spinal surgery error story.

Thanks to Jeff Knott for the excerpt from his new book, Navigating the Healthcare Maze-What You Need To Know, published by DC Press.

And being fed by a supermodel: Gisele Bundchen's healing touch for Tom Brady

The picture of New England Patriots' quarterback Tom Brady being spoon-fed by his supermodel girlfriend, Gisele Bundchen, was jarring. Perhaps football fans don't want to think of our injured QB as a guy who is cuddled – or coddled.

But I'm all for it. Why? Because the more Tom gets touched, stroked, and babied, the healthier he'll get.

Scientists have proven, in study after study, that touching and loving heals the body. During this important off-season, while Tom is recuperating, Pats fans should be begging Gisele to feed him. To rub his feet. Whatever nonverbal acts of affection she can come up with to make him feel all better.

Sure, it's weird to see a model pet our QB like a dog, but the next time Gisele does her doting we should cheer her on. In her own way, she's helping the Pats.

Dr. Tiffany Field, who runs the Touch Research Institute at the University of Miami, says touching is medicinal, and helps with diabetes, cancer, and asthma. "Hugging and massages and doing various forms of exercise stimulate pressure receptors," she says. "It slows the heart rate and blood pressure and the production of stress hormones."

Advice to partners of injured weekend warriors and professional athletes: Cuddle them, and coddle them.

Read another petting story.

Thanks to Meredith Goldstein for the source article in today’s Boston Globe.

The magician, not the wand: Wise use of the electronic medical record

Dr. Matthew Heller's comment:
Having been in solo practice for rheumatology for 34 years, I know that it's the magician, not the wand, that provides better health care. Although I use electronic medical records in my office, I do it in a way that does not interfere with listening to patients, making eye contact and practicing medicine in the way that I was taught 40 years ago.

It's not just privacy that’s at stake. More often than not electronic records spit out boilerplate data (often laden with errors) that get transmitted from one doctor to another completely devoid of any semblance of human interaction.

My vote is for the better practice of medicine, not the better use of computers.

Advice: Find a doctor who uses an electronic medical record as a useful tool, while preserving rapport and attention with you while in the exam room.

Read one patient’s observations on this.

Thanks to Dr. Heller for his letter to the editor, published in today’s New York Times.

And not tell us more to protect ourselves: Three families' victims of MRSA infections

The Story of Ms. A about her husband's treatment in a South Carolina hospital:
My husband was just released after almost two months in the hospital. His hip replacement was infected by MRSA at the hospital and the only way he could get the treatment needed was to remain in the hospital. When we took him back to the hospital with the first signs of infection in his incision he was not in isolation until the tests came back from the lab that it was MRSA. The nurses did not wear gowns and treated him as they did any other patient. Once the tests were known it was a whole different case. Why the hospital didn't see the need to protect all the people the moment a person comes in with a surgical infection is beyond me. I know we will worry about this infection the rest of my husband's life and we know he got it while in the hospital for a routine surgery. In the weeks I went to the hospital to visit my husband, it was scary how many isolation boxes were hanging on patient doors on the 9th floor. Even on the 3rd floor where I walked to get to the parking garage, there were lots of boxes on doors. The bills that have started coming in since we started working with the hospital two months ago are beyond what any regular person can pay. If the hospitals are the cause of spreading this infection, they should have to treat the victims for free. Good luck to Ms. Diane Parker in taking this to a higher power to stop this infection from affecting other families [by organizing a coalition in South Carolina to reduce hospital infections]. 2/3/09


The Story of Ms. B about her father's treatment in the same South Carolina hospital:
My family had the same experience with that hospital. My dad contracted MRSA after a back surgery. He battled it for a year before sadly we lost him to this totally preventable infection. There were isolation boxes on the 9th floor, but I never saw anyone take out the gowns, gloves, or masks that were in there. The doctor didn't wash his hands when coming in or leaving the room. Neither the doctors nor nurses told the family that we should be using the gowns and gloves. It was a custodial staff member that alerted us. After asking many questions, we finally had a name for the infection and realized that our dad was in for a rough ride. Although I am not a fan of lawsuits, it seems the only thing that talks in this country is money. Hopefully, an attorney will step forward and be brave enough to take a case like this. I have been unable to find one to help me hold the hospital accountable for an unnecessary death.


Crickett's story about her mother's treatment in another South Carolina hospital:
My family experienced the same thing also. Only my mother died 34 days after contacted HAMRSA , thru an intravenous [IV] line in the hospital. She had surgery to remove an area of her arm 1 inch wide and 6 inches long of all veins and tendons. On top of that was sent home with home health to show me how to care for the wound which was left open, not stitched up. She was only treated 4 days with vancomycin, which is one of the only drugs to fight infection. And sent home on bactrim. We took her to another hospital, where she was diagnosed with Septic MRSA. Why didn't the hospital tell us she was going to die, and not tell us more about how to protect ourselves from this dangerous infection?!


On Feb. 4, the South Carolina Hospital Association, Health Sciences South Carolina and Premier Healthcare Alliance announced a major statewide effort to get rid of preventable infections. They have formed the South Carolina Healthcare Quality Trust. This group is to figure out the problems and find the solutions.

Advice to people with a family member in the hospital: Ask the nurse if the hospital participates in a multi-hospital effort to prevent hospital infections.

Read another story of a serious hospital infection in a South Carolina hospital.

Thanks to Dawndy Mercer Plank for the source story, and to Helen Haskell for publicizing this.

Don't back down on disclosure: Drug companies' payments to doctors

The Boston Globe published an editorial yesterday encouraging the Massachusetts Department of Public Health to stand firm in its regulations that limit the gifts and money that drug companies give to doctors.

Calvin Timberlake would probably agree. Calvin’s story appeared in this blog here. His surgeon had invested in the manufacturer of Prodisc, and he chose to install a Prodisc in Calvin's spine to relieve his lower back pain. The Prodisc later came apart, requiring an immediate operation to remove it, and leaving Calvin permanently in pain. The surgeons who had written the medical journal articles that persuaded the FDA to approve the device had large investments in its manufacturer.

Doctors should disclose their investments to medical journal editors and to their patients, and state government regulators should insist they do so.

Advice: Ask the officials in your state government’s public health department to require disclosure of funds that doctors receive for all purposes other than direct medical care, including everything from pens and pads of paper to research funding.

Twittering an operation might seem frivolous: Detection of side effects

Part 1 of Terri’s story about her research into the treatment options she had for fibroid tumors appeared here yesterday. Here's Part 2:

During the surgery and recovery, Terri's husband used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Terri's teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the anti-nausea drugs Terri was taking. Her husband, who had been researching that very point when the message from the friend came in, was able to get the medication changed.

Advice: Get help systematically from your network of friends when you're seriously ill.

Read a story about a friend who was helpful in a very different way.

Thanks to John Schwartz for the source article in the NY Times issue of Sept. 30, 2008.

In the sea of online hypochondria: Paging Dr. Google to get second opinions – Part 1

Terri Nelson's experience in 2008 is very different from what it might have been in 1998. Terri, who lives in Portland, Oregon, received her diagnosis on August 11. She had two weeks before a follow-up visit with her surgeon. She and her husband Stewart used the time to research fibroids and the most common treatments.

She started with straightforward information gathering, checking the articles on fibroid tumors on sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. "Those had to be evaluated carefully to find the nuggets of valid information in the sea of online hypochondria," she noted.

Having spent many years trolling boisterous online forums, however, she had developed that essential Internet search tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, "Inquisitive Geek with Fibroid Tumors," that featured wide-ranging discussions that she found useful and specific to her condition.

By the time she had the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-sized tumor was a hysterectomy. But since that can impair sexual response, among other side effects, a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Terri’s research.

Advice for finding Internet information on your medical condition: Start with a broad authoritative source by respected clinicians, and then supplement that by finding the blog of a passionately absorbed knowledgeable person who has the condition you do.

See a short video about the need for a second opinion.

Thanks to John Schwartz for the source article in the New York Times of Sept. 30, 2008.