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Saturday, February 28, 2009

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.

Saturday, February 14, 2009

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.

Thursday, February 12, 2009

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.

Wednesday, February 11, 2009

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.

Monday, February 9, 2009

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.

Saturday, February 7, 2009

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.

Friday, February 6, 2009

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.

Thursday, February 5, 2009

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.

Wednesday, February 4, 2009

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.

Monday, February 2, 2009

A healthcare Catch-22: Kidney transplant for a homeless man

Pedro Cendeno Lora, age 47, had come to the U.S. in 1995 from the Dominican Republic, and had lived here quite happily for most of that time.

But he knew something was wrong when he became too tired to keep going to work. In late 2006, his lethargy was attributed to kidney failure; by then, he was out of work, and struggling to hang onto his rooming house in Dorchester, Massachusetts. Doctors told him he needed a kidney transplant. But in an all-too-common American healthcare Catch-22, he couldn't work because of his health, and he couldn't qualify for a transplant while in danger of losing his home.

He was running out of time when Health Care for the Homeless and Boston Medical Center came together last year to save him, in two ways. First, they searched for a donor, and realized his younger brother could donate a kidney. Second, Health Care for the Homeless helped him catch up on his rent so he could have a home to recuperate in.

The transplant was performed at Boston Medical Center. Pedro and his brother were able to stay at Barbara McInnis House for the homeless for the week before to prepare for the surgery, and for a month afterward.

"America saved me," he says.

Advice: Work to expand the safety net so it's there if and when you're out of work.

Read another story about a brother’s kidney donation.

Thanks to Adrian Walker for the source article in the Boston Globe of Dec. 9.

Sunday, February 1, 2009

Back at the same level: Tom Brady's hospital post-surgical infection

A few minutes before Super Bowl LXIII, and Patriots fans know that in a just world, Tom Brady should be guiding the Patriots to another Super Bowl win.

Tom, of course, suffered a season-ending injury early in the season. He had surgery on October 6 to repair his knee, with a patella tendon graft inserted to replace his torn ACL (anterior [front] cruciate ligament). His torn medial (middle) cruciate ligament (MCL) was also repaired.

Afterward, he suffered a postoperative staph infection – the most common kind of post-op infection. He was put on antibiotics, and remained on antibiotics through at least November 11. The infection was caught early, and was treated aggressively with wash-out procedures and intravenous antibiotics.

The infection has delayed the start of physical therapy to restore his range of motion, prevent the build-up of scar tissue, and protect the cartilage.

But Patriots fans can take consolation in the words of Kevin Wilk, the associate clinical director of Champion Sports Medicine in Birmingham, Alabama, who has helped more than 500 NFL players recover from ACL surgery: "He's going to make it back and play at the same level."

Advice: Bet on Tom Brady.

Read another football knee surgery story.

Thanks to Shira Springer for the source article in the Boston Globe of Nov. 11.