She turned 104 in April: Aggressive treatment for centenarians

Her father had sent her to secretarial school. She married, and then split up with her husband, a traveling salesman, during the Great Depression. She worked as a stenographer to pay rent to her parents for a small sunny bungalow overlooking a canal in East Rockaway, New York. She retired in 1961.

Then in 2003, when Hazel Homer was 99, after several recent hospital stays, more than one doctor advised that there was little to be done about her failing heart except wait for it to fail a final time. But Hazel was not interested in waiting to die of old age.

She kept talking to doctors until one agreed to install a biventricular defibrillator, five years ago. Now, at 104, her heart is still ticking, thanks to the specialized pacemaker and defibrillator that synchronize her heartbeat and can deliver a slight shock to revive her if her heart falters.

So far, it has never needed to shock her heart out of a potentially fatal arrhythmia.

Hazel now has a live-in aide at her tiny bungalow. She has been quite healthy throughout her life. Indeed, since the surgery, she has had only a single hospital stay, a brief one for pneumonia.

Her operation, a month before her 100th birthday, reflects a new frontier in medicine: surgery for centenarians. Some say, however, that aggressive treatment for the extremely elderly can give patients false hope and a diminished quality of life.

Advice to adult children of extremely elderly parents: Heed your parent's preferences about aggressive care, rather than your own.

Read a story about aggressive care on the other side of the coin.

Thanks to Anemona Hartocollis for the source article in today’s New York Times.

I became poor trying to save her: Unaffordable cancer care

After Dave Williams learned in April that the mass in his neck was malignant, his doctor referred him to a local cancer center. At his appointment, he was stunned at what he heard. "They said, 'We're looking at $30,000 of treatment, and we need $20,000 upfront,'" says Dave, 62, of Beesville, Texas. I don't have that kind of money."

For the retired landscape designer, the hospital's demand was an especially heavy blow, since he had recently paid off $273,000 in out-of-pocket costs for his ex-wife's care for ovarian cancer (his employer-sponsored health plan refused to cover her because she had cancer when he enrolled). "I became poor trying to save her, but she died," he says. He now lives in a trailer on a friend's property.

He applied for "charity care" at other hospitals but was rejected because he has saved about $10,000 in a 401(k) retirement savings account. "They all asked for a lot of money upfront before they would do anything to help me," he says. Dave is still exploring his options.

Advice to people with ruinously high healthcare expenses: Almost no one pays the full retail amount of a hospital's charges. The typical insurance plan gets a discount of about 60%, according to Sid Kirchheimer, so negotiate aggressively, or get someone who can.

Read a story of how universal health insurance has helped people who have found it hard to pay for their care.

Thanks to Sid Kirchheimer for the source article in the July-August issue of AARP Bulletin.

Easy for the drug dealers to sneak into your living room: Online drug sales

"The Internet made it easy for the drug dealers to sneak into your living room," said Francine Haight of La Mesa, California, whose son Ryan died in 2001 at 18 from an overdose of hydrocodone, generic Vicodin, which he had secretly ordered online with a debit card. An A-student and varsity tennis player, he had claimed in an online questionnaire to be a 25-year-old with back pain. He got his prescription and received the drug in the mail. His mother, a registered nurse, has fought against online sales since then.

In April, the U.S. Senate passed the Ryan Haight Online Pharmacy Consumer Protection Act, which would require certification of online pharmacies. It would also require doctors see patients before prescribing controlled substances. The bill is now in committee in the U.S. House of Representatives. At least eight states have passed laws barring electronic prescribing or sales without a legitimate prescription.

"Abuse of prescription drugs has exploded among college students, and…one way they get these drugs is over the Internet," said Joseph Califano, the director of the National Center on Addiction and Substance Abuse at Columbia University. The use of prescription opioids and anxiety drugs, especially in combination, accounts for a growing share of deadly overdoses nationwide.

Advice to parents of college students: Read their monthly credit card statements.

Read another prescription drug overdose story affecting a well-known actor.

Thanks to Erik Eckholm for the source article in the July 9 issue of the New York Times.

We are not foolish, selfish or blind: Use of Avastin for a glioblastoma

We continue to put our hopes for my father-in-law's health in Avastin. He is being treated off-label with Avastin for a glioblastoma. We are not foolish, selfish or blind for putting our hope in this expensive and controversial treatment.

When all other available treatments have an even smaller chance of providing any benefit, Avastin's positive results – however sparse – are extremely valuable to us.

The hope this drug provides our family is just as important to prolonging my father's life as the drug itself. Like many affected by cancer, we are smart advocates who do our research and know the odds. But no doctor or research study has ever told my father he couldn't be the outlier.

Advice to the families of cancer patients: Keep hope alive, and heed your cancer patient's preferences.

Read a story of a famous long-shot "outlier" survivor.

Thanks to Jana Jett Loeb for the letter to the editor, published in the July 12 New York Times.

Not a moment too soon, I thought of Tim Russert: Early warning signs of heart attack

Most Saturday mornings, I bicycle with a group of men, mostly in their 50s, whom I affectionately call the Cheat Death group. We are all in pretty good shape, competitive but supportive, and convinced that hard-core exercise is our ticket to postponing the inevitable.

The ride a few Sundays back was a tough one. At 6:30 am, the pack took off fast and immediately headed for the hills near Durham, New Hampshire. The first few climbs felt pretty good, but by the third hill I started to feel nauseated.

Figuring that was probably a result of the four beers and large Chinese dinner the night before, I kept going. Twenty-five mles into the ride, I had fallen to the back of the pack. I was short of breath and wondering how I was going to make it much farther.

I am someone who hates to quit. But after the third time the group had to stop and wait for me, I decided I had no choice. I watched them pedal away, then lay down in the grass. Besides the nausea, my only symptoms were a persistent cough and an overwhelming feeling that something was not right. I called my wife and got a ride home.

I started thinking: Though I'm a 50-year-old guy with a stressful job and a little too much around the middle, I had a clean bill of health. I had good cholesterol numbers and a great doctor, and recently I had passed a cardiac stress test.

That's when Tim Russert popped into my head. I bolted out of bed and Googled a list of warning signs of a heart attack, according to the American Heart Association. Nausea: check. Shortness of breath: Check. Chest discomfort: Perhaps, though it really didn't feel like much.

Ignoring the web site's advice to call 911 (I was too vain to have an ambulance pull up to my house), I drove to the hospital.

I was having a severe heart attack – despite the stress test, the red wine, olive oil, and all my exercise. They gave me a stent in the cath lab [for "cardiac catheterization"] to open the artery that had suddenly been blocked by a blood clot.

As in Tim Russert's case, there had been no warning signs. If I had not gone to the hospital, I might very well have died.

Advice to middle-aged guys like me: Listen to your body. Michael risked some teasing by his bicycle buddies and quitting the ride, and going to the hospital, and it saved his life.

Read a story of appropriate care after getting a stent.

Thanks to Michael Bicks for the source article in the July 8 issue of the NY Times.

He doesn't make mistakes: Cadaver grafts for ACL knee surgery

An orthopedic study, released yesterday, found a 24% failure rate in operations on young athletes who get a cadaver graft [from a dead person] in knee surgery to repair an ACL ("anterior cruciate ligament"). Many have discussed whether Tiger Woods should have this surgery. Here's the story of Keith, an avid amateur soccer player in California:

Having played an awesome game of soccer on Saturday the 15th, on Sunday July 16, 2006 I decided to help out a teammate and play for his team since they were short. The league that I play in have artificial turf fields. The league my teammate played in used various grass fields. On this particular day, it was an awful field of a junior high school. I had just recovered from a mild Achilles tendon strain to my right heel, so jokingly I stated "there's a hole out there w/my name on it, watch." 

Unfortunately, I was right, but had no clue what was in store for me. With maybe 10 minutes left in the game, the other guy playing forward w/me was on a breakaway. I was running with him, wide open, so he crossed the ball to me leaving me 1v1 with the keeper (who sucked btw). It was a simple setup that I've played through many times before: a quick cut to the side and pass the ball in. That's all I had to do. So, I did just that. 

Or attempted.

What happened, to my recollection, was that I tried to cut to the left w/the outside of my left foot. Somehow in my footing my left leg got stuck as if I couldn't lift it up quick enough. Maybe I stuttered in my steps while trying to quickly change my direction or something, but my leg was firmly planted as the rest of my body moved over it. Before I knew it, I was on the ground, my knee having bend backward and to the inside a bit and having heard a pop. I was in the most excruciating pain I've ever felt in my life, and as I was literally digging out clods of dirt and grass from the field I could only say two things, "f***" and "oh s***!" I didn't even move for a few minutes (from the ground that is). When a teammate shouted to the sideline "get some water" I blew up. "I DON'T NEED ANY F***ING WATER, WATER ISN'T GONNA HELP ME!" 

And it figures, because with my Achilles tendon strain, I bought and brought a bag of ice from Ralph's every game. The one day I don't do that is the day I tear my ACL, and some ice would have been nice initially. Anyway, when my teammates helped me up, I tried to walk and immediately my knee buckled. It was as if it were jelly, just no stability at all. The fact that somebody else said they heard a pop was a bad sign, but for the time being I had hoped that it was just a severe hyperextension. In high school I hyperextended my knee a few times and may have had Osgood Schlatter's disease (it was a debate, I had a lot of the symptoms but currently show no sign of ever having it).

My 1hr+ drive home was nervewracking because I started analyzing what could be wrong and what it could mean for the rest of MY season (screw my teammate's season!), and where the heck should I drive to. The urgent care I had intended on going to was apparently closed even though they have "24hrs 7 days a week" posted on their window. In tears from the pain, I made it to the hospital (having never been there before) and apparently parked the furthest distance from the urgent center as possible. In time I got a wheelchair and X-rayed, and 4 hours later (it was a long wait) was told to see an orthopedic surgeon. My leg/knee was in an immobilizer brace and a friend picked me up and took me home.




THE SURGEON

The next day, Monday July 17th, 2006, I went to Blue Cross' website and found the closest orthopedic surgeon to me and called. They had an opening if I could get there in 1/2hr, so I lucked out. The surgeon asked me a series of questions and prodded around my knee for a bit, injecting a giant needle into my knee and pushed out a TON of blood. The needle felt like it was going so deep so as to hit the bone, but it wasn't. Definitely painful while it lasted. I wish I could say the amount, because it was a lot even for an ACL tear, but must have been 4-6 CC's worth. He sent me off to get an MRI as it was the only way to tell for sure what was wrong. I had my fingers crossed for a "best of" situation, meaning I didn't want it to be an unhappy triad (torn ACL, MCL, and torn meniscus), but I wasn't gonna be happy with an ACL tear either. During this time, I had not only the immobilizer brace but was on crutches too. Anyway, a few days later I got the MRI results and sure enough...ACL complete tear. Unfortunately, my stupid surgeon was going on vacation to the Caribbean for THREE weeks! I wanted the surgery right away and this wasn't going to help. So, I painfully had to wait nearly a month in order to have it. At some point I got a hinged immobilizer brace which was a lot better than what the hospital gave me. This new brace had hinges which you could lock into various degrees of flexion and would be key mostly for after the surgery. So anyway, let's get to that already shall we?



THE SURGERY

Finally, the big day came: Friday August 25th, 2006. The process I was told would take about 1hr 15 minutes, which I found surprising, but I guess it's not that long for a non life-threatening surgery, heh. The method of surgery was an allograft: a cadaver graft, meaning some dead guy's Achilles tendon was used as opposed to a hamstring (or patellar tendon) autograft. My surgeon explained he preferred this method because it doesn't require cutting into your own body. Why heal from 2 places when you can do it from 1? Fortunately, despite his jackassery of leaving for 3 weeks, he's a very good surgeon in LA. I got extremely lucky by finding him at random!

 The morning of the surgery, I wrote a giant "NO" on my right knee as it is my healthy knee. The docs later laughed at me for doing that, because "he doesn't make mistakes." But hell, why take the chance? Anyway, I was told that after the surgery I would be sent home: an outpatient. I found that cool because who wants to be in a crappy old hospital? BUT, the surgery didn't go quite as planned. Apparently my surgeon's assistant was also assisting another surgery, so rather than 1hr 15 min, it was 4 friggin hours! But, it was a success. I woke up and they wheeled me out of the recovery room and into a room in the hospital...so, rather than being an outpatient, I was an inpatient and had to spend a night in the hospital. 

That night was the longest friggin' night of my life. I knew that surgery would be painful, but I figured that knee surgery was small in comparison to hip replacement, shoulder surgery, etc...WRONG! Sorry to say but you're gonna have pain and it's gonna be extreme. I was asking for morphine every 4 hours on the hour and didn't sleep for s***...kinda sucked. I didn't eat nor drink much while there either. The next morning was quite a task as it was time to go home. Time to go home after going through traumatic surgery and having no food in my stomach. It also meant moving with a recently-operated knee. A therapist-type guy came in and helped me out of bed (painful) and showed me how to go up and down stairs w/crutches. After a long process of getting me into a wheelchair, into and out of my mom's car, and into my bed...I was home. Aside from moving, there really wasn't much pain...from surgery and on I only took 3 Vicodin pills and honestly didn't really need them. This is to say that while laying on my back all day I wasn't experiencing pain. Getting in and out of bed (basically, when my leg wasn't laying in bed) hurt, but that's to be expected. Maybe 3 inches below my knee was, and still is to this day, numb because apparently they have to cut through a nerve, but the area is only 4x3 inches? Its not bad, but it's one of those things that I'd like to have back just because I'm supposed to. 

There are some other side effects of the surgery such as lightheadedness. Considering you're stuck on your back for such a period of time AND a loss of blood/traumatic surgery AND your usual eating habits have been changed temporarily, it's entirely natural, but I tried to sit up when possible to read, etc. 

So, my surgery was Friday Aug 25th, right? Well, Wednesday August 30th I was back at my surgeon's office for a followup, and my first day of physical therapy. I guess this leads us to our the next point...



THE RECOVERY

The goal of therapy is to achieve full flexion (bending) and extension. When I saw the therapist the first time, he just did some electro-pulse type stuff on my knee. I've done it before back in high school so it was nothing new. Because a little more than a month passed between injury and surgery, my leg muscles atrophied pretty bad. If there's one thing I've always had pride over, it was my muscular soccer legs, heh. My right leg hadn't changed, but my left was kinda chicken-legged. Most notably, my quads. 8 months later, my quads are still diminished...better than post-op, but still not to where they need to be. I'd like to say that my therapist didn't have me work on them in the early stages of therapy. He stressed that the hamstrings are really important because they're the muscles that aid flexion. But, I still feel like he neglected them when it was key because I'm only doing 15 lbs on my left leg...it's not that my muscles can't handle the weight, it's that the ACL is still weak at this point. Which is normal.

Advice: Look into other patients' stories thoroughly before choosing elective surgery.

Read a more grim story of a young athlete's knee surgery.

Thanks to Keith, and to Drs. Kurre Luber and Gene Barrett for their presentation at the 2008 American Orthopaedic Society for Sports Medicine's Annual Meeting.

With hormone pills, radiation, surgery and grit: Skin lotion for cancer patients

Kairol Rosenthal, 35, is a choreographer and writer in Chicago. For the last seven years she has battled thyroid cancer with hormone pills, radiation, surgery and grit. She has had to contend with 101-degree fevers, heart palpitations, and a severe lack of appetite.

The hormone therapy to slow the growth of the tumor, leaves red blotches on her face and bone-dry patches along her jaw line.

"I have not yet made my peace with skin that doesn't look good," she said. She spends much of her free time in hunting for news about thyroid cancer. She is writing a book about living with the disease.

Radiation can cause what looks and feels like a sunburn on the area that the beam passes through to get to cancerous cells. Chemotherapy can make the skin and lips feel dry and itchy because it indiscriminately tries to damage all fast-growing cells, including skin cells.

Kairol heard a radio ad for Lindi Skin, a skincare line of products designed for cancer patients. Several companies now make skincare products for cancer patients.

Depending on who you ask, such products give patients one more tool to ease side effects, or a false hope that a costly lotion will be more effective than a mild drugstore lotion.

Oncologists and dermatologists are now looking into these products because cancer-fighting drugs called targeted therapies can cause rashes so severe that some patients threaten to drop out if they are left untreated. As of now, there is no scientific study that shows these products are any better than less expensive and less glamorous products like Cetaphil or CeraVe.

Yet some patients prefer them. Dianne Dassa, a breast cancer patient in New York, said the Lindi body wash and serum helped heal her radiation burn and her psyche. And "they were so beautifully packaged, I felt like I was getting a gift."

Advice: As a gift, you can give the fancy lotions to the cancer patient you care for. Cancer patients themselves can buy the less expensive drugstore products that have been shown to be effective.

Read a story of an entrepreneurial cancer survivor.

Thanks to Kayleen Schaefer for the source article in today's NY Times.

They said it was a new policy, just out: Denial of care for an insured undocumented immigrant

Over the Memorial Day weekend, a 9-year-old girl in the Bronx, New York went grocery shopping with her mother. A man banged into Lauren's left arm with his cart, tearing away part of a big mole. Her mother brought her to the local hospital's Emergency Room, where a biopsy of the mole revealed that Lauren had a serious skin cancer - melanoma.

At a cancer hospital, she was scheduled to have the mole, surrounding tissue lymph nodes in her arm removed, and to have scans of her lungs and liver. Yet no treatment has started: Lauren was born in Ireland, and is not a legal resident of the US. Since age 4, she has had regular checkups and immunizations through a managed care company that was set up by the Roman Catholic bishops of New York under contract with the state to provide Child Health Plus insurance – which had been created precisely for children who did not qualify for ordinary government insurance.

Her mother said, "Around the 14th of June I got the call that since she did not have any [legal] status, her request was being denied. I never heard anything about this until she got sick. They said it was a new policy, just out."

Though several employees of the insurer have said the matter has been resolved, Lauren still has not received treatment. Most recently, the surgery, which had been rescheduled for Wednesday, was further postponed because the hospital is not a member of the insurer's network of providers.

Advice to undocumented immigrants needing health care: Your local newspaper and your congressman may be strong champions. The Irish Times and the office of U.S. Senator Charles Schumer are now helping Lauren.

Read another child’s healthcare access story.

Thanks to Jim Dwyer for the source story in today's NY Times.

It's an inconvenience, but the alternative is death: Paying for cancer drugs

William Dexter, a 67-year-old retired Air Force sergeant and mail carrier, had been coming to his doctor's office for monthly intravenous immune globulin infusions to bolster his immune system after a bone-marrow transplant, radiation and chemotherapy and other drugs for non-Hodgkin's lymphoma, a cancer of the lymph system.

The infusions can leave patients drained and shivering, with low blood pressure. William liked getting them in his doctor's office, where nurses comforted him with coffee, blankets, and chats about his dogs and military history.

But with the gap between his Medicare policy and his doctor's expenses, the doctor's medical practice was losing about $500 on each infusion. Now, instead of one monthly doctor visit, William makes two 90-minute round trips: one to the doctor for a checkup and to open the IV port in his chest, and another to the hospital, where the four-hour infusion involves more delays and less comfort. "It's an inconvenience, but the alternative is death," William says.
"I knew the doctor had to do it to stay in business."

Advice to cancer patients who need to take costly drugs: Ask about the drug company's financial aid programs.

Read another chemotherapy story.

Thanks to Marilyn Chase for the source article in today's Wall St. Journal.

For an audience of one: A hospice musician

As Judith Jackson recalls, last October "my mother was in her final week of life when Marcia [Feldman] came to play for her. It was a wonderful gift not only to my mother but to me. I was spending hour after hour sitting at her bedside, and then Marcia would come in and play this very soothing music. The nurses told me the last thing to go is the hearing. And my mother always loved that type of music."

Marcia, a classical guitarist, is a hospice musician. She has educated herself in the musical traditions of a variety of cultures, so that she can best match the music she plays to the heritage and preferences of the patient she is playing for. "Even when patients are too sick for verbal expression, the nurses can tell me when they are responding well to my music – their breathing may become less labored, for example," she said.

Marcia first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly. But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times," she said.

She has recently released a new CD, "Between the Worlds."

Advice: Consider bringing some music for your loved one in hospice care.

Read another hospice story.

Thanks to Nancy Shohet West for the source story in today's Boston Globe Sidekick magazine.

You can order her CD at CDBaby.com. I haven't heard the CD. I don't get any money for recommending this.

My military psychiatrist advocated for me: Treatment of mental illness

Ann Breitengross' story:
The military needs to arrive at a consensus concerning proper mental health care for troops. When I received a diagnosis of a mental illness in 2003 prior to an impending deployment, my military psychiatrist advocated for me. Despite my suggesting an alternative assignment to honor the terms of my contract, he recommended a medical discharge, giving me the opportunity to recover and develop the coping skills necessary to live a successful life. Not all military officers are so empathic. Had I been forced to deploy at that time, I know the stresses of being in a war zone would have exacerbated my symptoms, compromising the mission or, worse yet, my own life.

Advice to soldiers: Most people now know that tough soldiers can get mental illness without being crazy.


Read a story of a tough soldier who has overcome tough psychological issues.

Thanks to Ann for her letter to the editor of Time Magazine, published on June 30.

Too busy to take in what I have to tell her: Physicians' work-flow with an electronic medical record

Joyce Adams' wry observations:
A doctor I see is one of the 4% of doctors who make full use of electronic records to assist their practices. It seems obvious to me that having lab results, previous clinical observations and recommendations at her fingertips enhances the care she provides.

On the other hand, visits to this doctor involve minutes spent while she locates my health records on the computer, and minutes spent as she enters new data, all the while with her gaze and attention fixed on the computer rather than on me. The tap-tap of her fingers indicates that she is too busy to be taking in whatever I have to tell her, and that the electronic task has been elevated over the old-fashioned hands-on approach to clinical care.

Once records are enshrined in my doctor's computer, they are available for her use and the use of other doctors in her clinic. However, they fail to travel beyond the clinic to the office of my primary care doctor because apparently the task of faxing them over is too onerous in this high-tech age.

Getting electronic records to my primary care doctor, who oversees all aspects of my health, requires a more basic effort: a hand-carry by the patient.

So much, and so little, progress!

Advice: Choose a physician who has both an electronic medical record and high patient satisfaction ratings.

Read another story on the work-flow of physicians with an electronic medical record.

Thanks to Joyce Adams for her letter to the editor, published in today's NY Times.

Stronger than I've ever been: A heart transplant athlete

The heart transplant survivor Kelly Perkins has added another first to her long string of mountaineering feats since getting a new heart 13 years ago – a dangerous climb up a sheer, 2,000-foot face of Half Dome in Yosemite National Park.

Kelly, age 46, and her husband, led by guide Scott Stowe, began the climb on Thursday and reached the top of the 8,842 foot high dome early on Saturday afternoon.

"I feel great," she said by phone from the top of Half Dome. "Physically, I feel I'm stronger than I've ever been."

Advice to transplant patients: Live your life as fully as Kelly.

Read another superstar athlete’s story.

Thanks to the NY Times for publishing the source article today.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

I'll do anything to save money: Patient testimonials for face-lifts

For Dave Gibson, 53, a New York actor, who had his Lasek surgery in May, posting a video on Facebook and YouTube was a no-brainer. He even added his own blow-by-blow narration. ("The first thing the doctor does is place a round apparatus in the center of my eye…") At the doctor's request, he also sent an email message to 100 of his closest friends, racking up a $1 credit for each one. As soon as the doctor had mentioned the rebate, Dave thought to himself, "I'll do anything to save money."

Another patient asked to remain anonymous because he is still undergoing treatment for an operation he had done about six months ago. Never mind that the video went up almost immediately, before he had time to heal. "Regardless of whether I'm happy – that's not going to stop me from posting," he said. "It's money in my pocket." As it turns out, he isn't satisfied with his results, but he hasn't taken down his glowing endorsement.

Advice: Take patients' testimonials with a grain of salt.

Read another plastic surgery story.

Thanks to Abby Ellin for the source article in the NY Times of June 26.

I got my mother back: Overuse of antipsychotic drugs in nursing homes

Last fall, Theresa Lamascola of the Bronx, suffering from anxiety and confusion, was put on the antipsychotic drug Risperdal. When she had trouble walking, her daughter took her to another doctor, who found that she had unrecognized hypothyroidism, a disorder that can contribute to dementia.

She was moved to a nursing home to get the problems under control. But things only got worse. She "was screaming and out of it, drooling on herself and twitching," said her daughter, a nurse. The psychiatrist in the nursing home stopped the Risperdal, which can cause twitching and vocal tics, and prescribed a sedative and two other antipsychotics.

"I knew the drugs were doing this to her," said her daughter. "I told him to stop the medications and stay away from Mom."

Not until another doctor took her off the drugs did she begin to improve. He prescribed Aricept. "It's not clear whether it was getting her hypothyroid and other medical issues finally under control or getting rid of the offending medications. But she had a miraculous turnaround," said the new doctor.

She still has dementia but she went from confinement in a wheelchair – unable to sit still and screaming out in fear – to being able to walk with help, sit peacefully, have some memory and ability to communicate, understand subtleties of conversation and even make jokes.

Or, as her daughter put it, "I got my mother back."

Researchers estimate that one third of all nursing home patients have been given antipsychotic drugs.

Advice to people with elderly relatives in a nursing home: Ask the doctor about alternatives to antipsychotic medicines.

Read another story about drug side-effects in the elderly.

Thanks to Laurie Tarkan for the source article in today's NY Times.

Blind-sided by my reaction: The role of attitude in surviving cancer

Richard Haimowitz, 62, a lawyer in Queens, New York who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

"The day of my last treatment, people congratulated me, but I felt blind-sided by my reaction," he said. "I thought, 'Oh my God, I have nothing left to fight with,' and I felt angry that there was nothing left for me to do." Statistics to the contrary, he has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, he did not fear death, even though he did not want to die.

Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say Yes; others say No. They all have their critics.

Advice to friends and families of cancer patients: Try to empathize with them regardless of their mix of feelings.

Read another story about the role of attitude in recovering from cancer.

Thanks to Jan Hoffman for the source article in the June 1 issue of the NY Times.

He has resumed athletic activities: Attitudes toward one's own cancer

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to refrain his loved ones' language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on his ankle because it was so rare and because "no one wants to publish when all the subjects die." A month later, Brian, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, "You're so brave, I don't know how you do it; you're my inspiration." "They would put me on a pedestal," Brian said. "That doesn't allow me to be human an in pain, angry or depressed."

His email messages reveal a spirit of great equanimity and eloquence. He now wears a prosthesis and has resumed athletic activities, and will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. "This is not a call for pity responses," he would add. "Just let me be where I am."

Advice to friends and families of cancer patients: Try to just let them be where they are.

Read another story about the role of hope.

Thanks to Jan Hoffman for the source article in the NY Times of June 1.

Coming from several blocks away to gawk: Privacy and neighbors

Dear Amy,
I have a sensitive issue and nosy neighbors. Three weeks ago, I was taken to the hospital because I suffered from major depression and was suicidal. I was in the hospital for eight days.

One week to the day of my release, I had four police cars, eight officers and two paramedics at my home to take me back to the hospital. Literally, every one of my neighbors was outside wondering what was happening, and they saw me being carried away on a stretcher. I was gone for three days and was diagnosed with bipolar disorder.

That weekend I had the police at my house four times because of my son running away, becoming violent and threatening suicide. The last incident ended with five police cars, 10 officers and the obligatory ambulance and paramedics. They blocked the roadway in both directions. Everyone was outside and watching, some coming from several blocks away to gawk.

What do I say to these people? Do I tell them I was suicidal, depressed and now diagnosed as bipolar? Do I tell them my son has a drug and alcohol problem along with also being bipolar?

Or do I just ask them why they're so interested in something so personal?

I need a subtle way to tell them that it's none of their business without revealing the true reasons. Any suggestions?

Amy's Advice to Wondering:
First of all, I hope your situation has stabilized. I can imagine that you feel very exposed because of the public drama brought on by these crises.

You don't have to reveal anything to your neighbors, but if you choose to, you can say, "I realize that things have been very dramatic at our house lately I've had some health issues that brought on a crisis for me and my son, but we're hoping things are better now."

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

Thanks to Amy Dickinson for the source letter in her column, published in the June 16 issue of the Philadelphia Inquirer.

The physician ordered the methotrexate as listed: A wrong dose near-miss

An 85-year-old man who'd been getting treatment for severe psoriasis was admitted to the hospital with a three-week history of confusion, forgetfulness, and weakness. Home medications listed on his medication reconcilation sheet included oral methotrexate, 25 milligrams every Saturday at breakfast and lunchtime. The hospital used patients' medication reconciliation sheets as order sheets, and a physician ordered the methotrexate as listed.

A typical dose of methotrexate for psoriasis is 2.5 milligrams at 12-hour intervals for three doses once a week. Doses may be gradually adjusted but generally should not exceed 30 milligrams/week. The pharmacist recognized that a 50 milligram weekly dose was high, so he asked the nurse to confirm it. The patient verified that he was taking 25 milligram doses.

Before dispensing any methotrexate, a second pharmacist questioned the order. The pharmacist called the patient's family and asked them to read the prescription container. It indicated that each dose was supposed to be 2.5 milligrams. The order was changed because of the pharmacy intercept, and the patient received the correct dose.

Advice: Bring your medication containers and a list of your medications when you go to the hospital.

Read another near-miss of a drug error story.

Thanks to Michael Cohen for the source story in the June issue of Nursing2008.

A buffer and enabler for the patient: VIP care

Dr. Victoria McEvoy on VIP care:
One Emergency Room doctor told me recently about a VIP patient who came to the ER complaining of chest pain. The patient's visit triggered a cascade of events at the hospital administration level. The "VIP Office" sent a delegate to smooth the way, and the patient came with his own personal physician, who was there to serve as a buffer and enabler for the patient. Not only was the "physician bodyguard" not in the right specialty for the complaint and age of the patient, but the physician gave orders: "Call the cardiologist and get an echocardiogram."

Both the resident and the responsible physician thought the patient's problem was gastro-intestinal: he had swallowed a huge antibiotic pill without water, and the esophagus was irritated enough to cause the chest pain. Instead of quickly looking at the patient's esophagus, hours were wasted getting cardiology and cardiac tests which were not needed. His VIP status delayed him getting proper care.

Advice to Very Important Persons: If you bring in your personal physician, make sure they will listen to other doctors' opinions.

Read a celebrity drug error story.

Thanks to Dr. Victoria McEvoy for the source article in yesterday's Boston Globe.

National Marrow Donor Registry

The Dana-Farber Cancer Institute is encouraging everyone to join the National Marrow Donor Registry today from 10 am – 3 p at Tufts University's Cousens Gymnasium in Medford, Massachusetts. Former Red Sox pitcher Bill Monbouquette, recently diagnosed with leukemia, is among thousands of people who are awaiting a transplant.

Advice: Look for a time and place to register with the National Marrow Donor Registry. You might save someone's life.

Read a donor story.

Thanks to the Boston Globe for the source article in today's newspaper.

A pictogram in return for another pictogram: Diabetes patient education

Consultations with Mrs. L are difficult: sometimes, she comes
without her diabetes logbook, or forgets to have the requested
HbA1c assay. Above all, she comes either alone or accompanied
by someone who, like herself, speaks nothing but Chinese. All I
can do, in order to understand her repeatedly high HbA1c
levels, is to look at her logbook and try to understand the
documented insulin doses and the blood glucose concentrations.

Recently, I admitted her to hospital. Firstly, we verified that
the technical aspects of blood glucose determination and
insulin injection were perfectly correct. I also told her that
I needed an interpreter. A Chinese neighbour who was fluent in
French came with Mrs. L on the following day. I first checked
with Mrs. L the basics of adapting insulin doses and began to
ask her questions through the interpreter. No answer. I
therefore asked the interpreter if he, himself, had understood
the meaning of the questions. He was positive. I then asked Mrs.
L to tell me what she thought of insulin. No answer. I realised
that she knew nothing about it and that the treatment made
absolutely no sense for her.

This situation reminded me of John Searle’s "Chinese room"
argument. Imagine a Westerner, speaking English but not
Chinese, in a room with a window. Through the window, a Chinese
person shows Chinese pictograms. The Westerner has a manual,
written in English, instructing him how to show a pictogram
specific for the pictogram he sees through the window. He is
not aware that the pictogram he sees is a question, and that
what he then shows is the correct answer. The Chinese person
outside cannot work out that the Westerner does not understand
Chinese.

In the case of Mrs. L, we doctors were the Chinese. We had no
direct way of recognising that the blood glucose determinations
or the insulin injections that she performed impeccably had no
meaning for her.

I decided to start her education from scratch. What is
diabetes? What is a normal glucose concentration,
hypoglycaemia, hyperglycaemia, etc? Repeatedly, I asked the
interpreter whether he understood and whether he thought that
Mrs. L understood. He was affirmative. I arrived at a problem—
how to verify that the dose of insulin was correct. At this
point, I was unsure whether the interpreter understood the
question, and I decided to stop the session, giving him another
appointment for the next day. In fact, I doubted the
interpreter’s comprehension of the real sense of what I had
said. It seemed to me that the Chinese room was now separated
from me by two walls and windows.

The next day, a different person accompanied Mrs. L to the
appointment—her nephew, also perfectly fluent in French.
Needing to go through my explanations all over again, I decided
to use another strategy and asked the nephew to imagine that he
was diabetic, and that he had to listen to my explanations as
if they concerned him, in order to give a meaning to the
therapeutic education. Only then would he translate the
information to his aunt. I had the sensation of trying to enter
the Chinese room by climbing through the first window.

To a lesser degree, this story may be relevant to many
consultations, even when there is no obvious language barrier.
It is vital that the patient understands the message as a whole
and not just the words, or else the treatment routines may be
analogous to nothing more than showing a pictogram in response
to another pictogram.

Advice for speakers of a foreign language: Get a good interpreter.

Thanks to Dr. Gerard Reach for the source article in the Feb. 16 issue of the British Medical Journal.

Including her favorite meals and TV shows: Web-based caregiver communities

When Stephen Dworkin's father was diagnosed with pancreatic cancer in 2005, he and his two siblings began to share in his care. But Stephen was in Newton, his parent lived in Florida, and his brother and sister lived in Connecticut. "My dad passed away relatively quickly. And then we were completely unprepared to care for my mother," Stephen said.

At the time, Stephen's business partner, Jonathan Quint, saw the challenges his wife was having in caring for her mother, and the two knew they'd hit on a much-needed service: helping baby boomers care for aging parents.

They came up with Caregiver Helper, a secure online community resource that houses information about medications being taken, emergency contacts, doctors' appointments, and even the patient's favorite activities.

"Anytime a new caregiver came to my mother's house, all the information was available, including her favorite meals and television shows. And each time there was a new doctor, all of her medications could be printed out."

One in four American families are juggling similar caregiving responsibilities, according to the National Alliance for Caregiving.

Advice to Baby Boomers caring for parents who live far away: Consider a resource like this one.

Thanks to Susan Chaityn Lebovits for the source article in the Feb. 25 issue of the Boston Globe.

An hour after being discharged from the Emergency Room: Conflict of interest on a potential malpractice suit

Dr. J.R.'s question:
I am a family physician. A patient I'd not seen in months passed away about an hour after being discharged from an emergency room. Her mother, also my patient, asked me to review the records and autopsy to see if she should bring a malpractice suit against the E.R. physician and the hospital. I am friends with the physician and on the hospital's board. Ought I comply with this request?


Ethicist Randy Cohen's answer:
You should not. Indeed, you cannot – not properly, not without risking charges of bias. Your attachment to your friend and your position on the hospital's board create – or may seem to create – divided loyalties. You should recuse yourself from this task, explain to the patient's mother why you are doing so and refer her to a disinterested physician with the expertise to review the records and advise her how best to proceed.

Update: J.R. met with the family but did not offer a medical opinion, explaining that the records provided insufficient information for him to do so. He said he believed that they would not be satisfied unless the matter were investigated further and so suggested they speak to a lawyer who would have a neutral expert review the case.


Advice to family members considering a lawsuit for a medical error: Consult a doctor or nurse who was not involved.


Thanks to Randy Cohen for the source article in the Ethicist column of the New York Times Magazine of May 25.

Cancer is not a football game: Teddy Kennedy's brain cancer

The mantra of "fighting" cancer drives me nuts. The caring behind it is wonderful; the metaphor is not. Cancer is not a football game. The fighting metaphor is insidious because it implies that if you fight, you can "win." And if you don't fight hard enough, you are therefore a "loser."

The challenge for Teddy Kennedy, just diagnosed with brain cancer, is to figure out where the locus of our limited control lies. He can't change the fact of his diagnosis. But he can, and already has, chosen his doctors wisely. He is putting his resources now, appropriately, into learning about his cancer, what drives it, and what might slow it down. He may have to choose additional doctors, anywhere in the world. That's great. That's the stuff that really is under his control. As is choosing how to spend his time and energy. He is already doing all the right things.

So, I would change the mantra to "Breathe, Ted, breathe." Sail your boat. Kiss your wife and your kids. Trust your doctors. Keep doing the work you love.

Advice to cancer patients: Focus, like Teddy, on what is within your control.

Read last week’s post on Teddy.

Thanks to Judy Foreman for the source article in the May 27 issue of the Boston Globe.

I should be an indignant patient-plaintiff: Apology for drug interactions and other medical errors

Amy Silverstein’s story:
For the many errors that I have witnessed as a heart transplant patient at a well-regarded New York City hospital over the last 20 years, there has been only one doctor with the courage and character to say "I'm sorry."

I should be one of the "indignant" patient-plaintiffs who send legal costs and insurance rates soaring, but I am not. Money cannot heal the ways that I – and many other patients – have been damaged.

It does not take the surgical removal of the wrong kidney or arm – the stuff of lawsuits – to bring about the kind of injury worthy of a hospital's attention. A patient fills a prescription written by her doctor, only to be warned by the package insert that the drug interacts dangerously with another medication prescribed by this same doctor, and there is error, destruction of trust and near loss of life. And no one pays attention.

Even without the threat of lawsuit, a wronged patient deserves some long, hard thought among doctors and hospital administrators.

The writer is the author of "Sick Girl," a memoir.

Advice: Read the package insert after you pick up your prescription.

Read a celebrity’s fatal drug interaction story.

Thanks to Amy for her source letter to the editor, printed in the May 26 issue of the New York Times.

Memorial Day: Veterans’ medical misadventures

We remember these Iraq veterans who have had medical errors:

Sgt. Michael Boothby
(Delayed treatment)


Corporal Cody Hill
(delayed rehabilitation for extensive burns)


Lance Corporal Jeffrey Lucey, deceased.
(lack of access to services)


Cpl. Casey Owens
(delayed approval of surgery; lack of access to services)



Sgt. John Daniel Shannon
(delayed treatment for traumatic brain injury)


Lance Corporal Michael Stubbs
(delayed diagnosis; lack of access to services)


Staff Sgt. Mark Taylor
(misdiagnosis)


Sgt. Edward Wade
(delayed care for traumatic brain injury)

Memorial Day: We Remember

This weekend we recall these victims of medical errors, among many others:

Doug Bonderud


Elaine Bromiley (anesthesia error)


Armando Castellanos
(medication error)


Jasmine Gant
(medication error)


Betsy Lehman (medication error)



Brendan McDowell


Cheatum Myers
(nursing home neglect)


Naomi Press (nursing home neglect)


Jesica Santillan (transfusion error)

Seventeen weeks today: Quitting smoking with a buddy

JLynnJ’s story:
My sister and I took the quitting plunge together. We have both smoked since we were in college, she's 36 and I'm 31. She puffed her last cigg on Jan 15th, mine was on Jan 23rd, of this year. We both used the patch and followed the directions to a "T". It's been over 4 months now, and neither of us have cheated. We even took a trip to Vegas and made it without smoking. To me, this is proof that the buddy system does work!!! So smokers, get a buddy and quit, you will be sooo glad you did.

The urge to smoke is contagious, but quitting apparently is, too. A team of researchers who showed obesity can spread person-to-person has found a similar pattern with smoking cessation: A smoker is more likely to kick the habit if a spouse, friend, co-worker or sibling did as well. What's more, smokers tend to quit in groups and those who don't stop puffing increasingly find themselves pushed to the edge of their social circles, the researchers found.

"Your smoking behavior depends upon not just the smoking behavior of the people you know, but also the people who they know," and so on, said Dr. Nicholas Christakis, a medical sociologist at Harvard Medical School and lead author of the report.
The findings back up previous studies showing that peer influence plays a key role in a person's decision to stop lighting up and provide evidence that the "buddy system" used by smoking cessation, weight loss and alcoholism programs to change addictive behavior works.

The study appears in the most recent issue of the New England Journal of Medicine.

Advice to smokers who want to quit: Find a friend who smokes, and quit at the same time.

Read another smoking cessation story.

He liked what he saw between the binges: Recovery from addiction

In the darkest days of a 30-year drug addiction, Vera Crowl was homeless and living on the streets of southern California, getting by on odd jobs and sometimes operating outside the law. The college degree she had started decades earlier was all but gone, as was her ambition for a singing or theatre career.

"I got into the deepest, darkest addiction," she said. "I was doing all kinds of stuff for drugs and money." But today, after being clean and sober for more than seven years, Vera, 55, is taking her last class for a Bachelor's degree in psychology from the University of Dayton and is planning to begin a Master's in clinical counseling at UD in the fall. Because UD doesn't have a summer commencement, she was included in the spring ceremony this month.

She wants to become a substance abuse counselor, a call she says she received from God one evening during Blessed Adoration. By then, she had conquered her addiction and had become active in the Catholic community in Richmond, Indiana, where she now lives. "I haven't allowed myself to feel proud, because I'm so full of gratitude," she said. "Gratitude to God for calling me to His service and for His purpose. Gratitude to the recovery programs that have supported me, UD, my family, friends and the Richmond Catholic community."

Hers is a story of hope and commitment, and following God’s call. She grew up in St. Louis, graduated from a Catholic high school, and went to Southeast Missouri State, where she began "partying" too much. "I was mostly doing stimulant pills, and then I would take downer pills to sleep. It was crazy. I was young and strong," she said. "It just never occurred to me this was a problem. It was just something we did."

After four years at the school, she dropped out, a drug addict with no degree. She later moved to Berkley, Calif., to be with some friends who didn't abuse drugs and wanted to help her. She worked in a restaurant and did personal care in private homes.
"Not even these good, good friends could keep me or stop me in just progressing in my addiction," she said. "I tried to get help, but I kind of always fell prey to the need for drugs and alcohol." She ended up losing her jobs to drug use.

"It never occurred to me to stop," she said. "I kept thinking if I got it under control I would be OK. I just got worse." Eventually, another friend encouraged her to move to southern California, and he too, tried to help her. Her addiction did lessen, and she began working temporary jobs, but after several years she was back to being a full-blown addict, she said.

She moved again and ended up homeless and lived on the streets for five years. It was then she met Dick Crowl, the man she would eventually marry. He worked for the company where she did odd jobs. They began talking and spending time together. It didn't take him long to figure out she was an addict, but he told her he liked what he saw "between the binges," she said.

It was a step.

"That was my first glimmer of hope," she said. "My self-esteem was just crushed by that time. I didn't think there was anything in my life to appreciate or love, including God. I just felt so hopeless. I felt like I'd ruined my whole life."
The two decided to leave California and settled in Richmond. She was committed to getting clean, because "I didn’t want to live like that anymore," she said. It took a few tries, but recovery took hold. They married in 2000.

She became active in the church. "When I came back to the Catholic Church, all those (drug addict) memories flooded back. I was so ashamed."

It was then that she heard God's call to counseling. A few weeks later her father, an ordained deacon, received a letter informing him about a UD scholarship available to his family for his service to the church. She contacted the school, took some practice classes, and started at UD in January 2006.

She has taken a full course load of classes every semester — even summers — commuting to Dayton from Richmond several times a week. She also works part-time as a hostess in a Richmond restaurant.

"It's difficult to return to school after 30 years on the outside," she said. "It was a culture shock. But I've learned to accept success, I've learned to accept failure, and I've learned a lot about humility."

She takes inspiration from her father, who went back to school after he retired.
Vera won this year's Nora Duffy Award, presented each year to a UD adult learner who has overcome significant obstacles to achieve a baccalaureate degree and who reflects the spirit of the Marianist tradition.

Wiebke Diestelkamp, a mathematics professor at UD, nominated Vera for the award.
"Her church and her friends and her community are very, very important to her. She has a very strong sense for giving back and appreciates those gifts that she ahs been given," Diestelkamp said. "I'm very proud that she made it and that she didn't give up and that she did persevere."

Vera shares her story as a message of hope — that there is always hope — and faith.
"I wake up every morning, and I open my garage door, and I thank God. I thank Him for another opportunity to serve Him. I thank Him for my life," she said. "I have no doubt that God's hand is in everything. He allowed me to survive my own poor choices."

Advice: Help others through the problems you overcame.

Read another recovery story.

Thanks to David Eck for the source story in today's Catholic Telegraph.

Teddy Kennedy

A well-to-do man, Senator Edward Kennedy has long stood up for the underdog.

In response to the grim news this week of his terminal brain cancer, Sen. Kennedy has reached out to his family, and has even gone sailing near his beloved Cape Cod.

He lives his values, and fights for them. He consistently works with political opponents to find common ground, on immigration and education reform, to cite just two recent examples.

I hope that having fought hardest to expand healthcare over the years, that now, with the possibility of a Democratic president and Congress, he will live to see the passage of a universal healthcare bill in the next Congress.

For Jewish friends, who are encouraged to pray for an ailing person's health with the person's Hebrew name, I suggest as a Hebrew name, Thaddeus ben Shoshana (Ted, son of Rose).

Advice to people with terminal illnesses: Live your life with as much of Teddy's passion and humor as you can.

Read a story of zestful living in the “bonus round.”

One cup at a time: Alex's Lemonade Stand Foundation

Alexandra "Alex" Scott was born in Manchester, Connecticut in 1996, the second of four children. Shortly before her first birthday, she was diagnosed with neuroblastoma, a rare childhood cancer.

On her first birthday, the doctors told her parents that if she beat her cancer, it was doubtful she would ever walk. A year later, she was crawling and able to stand with leg braces. She willed herself to walk, and appeared to be getting better, until the shattering discovery within the next year that the tumors had returned. At age four, she received a stem cell transplant and told her mother, "When I get out of the hospital I want to have a lemonade stand." She wanted to give the money to doctors to help them find a cure. She held her first lemonade stand later that year, and raised $2,000 for "her hospital."

Alex continued to hold yearly lemonade stands in her front yard to benefit childhood cancer research. News spread, and people all over the world held their own lemonade stands and donated the proceeds to Alex's Lemonade Stand Foundation.

In August 2004, Alex passed away at age eight, knowing she had helped raise over $1 million to find a cure for children with cancer. Her three brothers and supporters are committed to continue her legacy.

Advice: Live with Alex as your role model.

Read another young hero’s story.

This is drawn from the foundation's bio of Alex.

Together with his oncologist: Matchmakers for new drug trials for multiple myeloma

Diagnosed last fall with smoldering multiple myeloma, 45-year-old Glenn Codderre relies on his oncologist for the standard drug regimen now used to treat the disease. Glenn, a Boston-area consulting manager for Hewlett-Packard, began his search for trials through the nonprofit Multiple Myeloma Research Foundation, which contracts with EmergingMed.

Together with his oncologist, he decided not to participate in one trial EmergingMed found because of concern about side effects and the trial drug's interaction with his current medications. He says the consultant he works with at EmergingMed "helps me save time and stay informed on clinical trial options while I continue to balance family and professional responsibilities." He hopes they will find a drug trial and that the drug being tested will slow the progression of his disease to cancer.

For-profit matchmaker firms like EmergingMed help patients identify experimental drugs that might help them and connect patients with the appropriate clinical trials. In Glenn's case, an effective drug might slow the progression of his disease to cancer. EmergingMed narrows its searches by taking into account the stage of the disease and the patient's prior treatments.

EmergingMed gets paid through fees that it charges medical centers, advocacy groups and research sponsors. The company's web tool is free to patients. The company doesn't disclose personal information gathered on its web site.

Advice to the families of cancer patients: Consider using a matchmaking service to find a clinical trial of a drug that could help your loved one.

Read another clinical trial story.

Thanks to Laura Landro for the source article in the Wall Street Journal of May 14.

Twice he was given last rites: Staph infection from a knee replacement

Robert Besse's painful journey began when he checked into a Cincinnati hospital a year ago to get his right knee replaced. The 60-year-old retired pharmacist had worn down the joint skiing and hiking and working on his feet for years.

Ten days after leaving the hospital, his knee was still oozing bits of fluid. "The pain was off the scale," he said. One of his surgeons took a look and immediately had him admitted to a different hospital, where he declined rapidly. Twice during the first night he was given last rites. But he survived until the morning when the surgeon opened up his knee again and found a raging staph infection that took two rounds of surgery to clean up. He spent the next several months on infused antibiotics and pain medication. He was barely able to celebrate his 60th birthday with his family in Breckenridge, Colorado.

He might have fared better at a specialty hospital – one of 200 centers in the U.S. that focuses on the care of a particular body part like the heart, spine, or joints, or a specific disease such as cancer. A study by the University of Iowa on thousands of Medicare patients found that rates of bleeding, infections, or death ("complications") are 40% lower for hip and knee surgeries at specialty hospitals than at big community hospitals. A study funded by Medicare in 2006 found that mortality rates for orthopedic surgery, e.g., knee replacements, are 75% lower for orthopedic patients in specialty hospitals than for other hospitals.

Advice to patients about to have surgery: Consider having the surgery at a specialty hospital.

Read another knee replacement story.

Thanks to David Whelan for the source article in the March 10 issue of Forbes magazine.

Read all about it: UCLA Medical Center's healthcare for Farrah, Britney Spears, Tom Cruise & Mariah Carey

California health regulators have connected 14 more people affiliated with UCLA Medical Center, including four physicians, to the improper viewing of celebrity medical records, bringing the number of current and former workers apparently implicated in the snooping scandal to 68.

The additional violations came to light in a report by the California Department of Public Health, which was sent to the hospital Friday. The findings are the latest to stem from reports in The Los Angeles Times about UCLA employees' prying into records of celebrities and co-workers. The regulators faulted UCLA for failure to maintain patient confidentiality and report the breaches to regulators.

One employee reviewed the records of actress Farrah Fawcett on 104 days between July 1, 2006, and May 21, 2007. She also looked at the records of pop star Britney Spears, whose medical files have been viewed inappropriately by dozens of other UCLA workers. The employee was indicted by a federal grand jury last month for allegedly selling information to the news media from medical records of celebrity patients. If convicted, she faces up to 10 years in prison.

Earlier news stories described the inappropriate viewing of the UCLA Medical Center's healthcare records of Tom Cruise and Mariah Carey.

State inspectors found that 13 other people affiliated with UCLA apparently snooped on Britney's records between July 2006 and May 2007. That is in addition to 53 staffers identified in three previous state reports who looked at her records on other occasions. The 13 included three physicians, a physician trainee, three registered nurses, two outside contractors, a volunteer and three support staff.

A note on this blog's policy on the "outing" of healthcare organizations where errors have occurred: Normally I do not name the organization. In this case, because of their published history of numerous repeated errors with no apparent system safeguard to prevent their recurrence, I have referred to UCLA Medical Center by name.

Advice to Hollywood celebrities: Choose other places than UCLA Medical Center to get your healthcare, unless you want riffraff like me to read about it.

Read another privacy story.

Thanks to Charles Ornstein for the source article in the May 14 issue of the Los Angeles Times.

My passion of drumming in a smoky bar: A Cystic Fibrosis musician

There are days when 26-year-old Emily Schaller can barely breathe because of cystic fibrosis – and playing in smoke-filled bars hasn't helped. She works in a store as her day job. At night, she's the drummer for Hellen, a Detroit rock band that performs concerts to support CF research. She plays in an annual "Just Let Me Breathe" concert fund-raiser.

Through Hellen and her organization, the Rock CF Foundation, she has generated thousands of dollars for the Cystic Fibrosis Foundation. CF is a chronic disease, genetic in origin, that causes the body to produce thick mucus that clogs the lungs.

"Just in the past few years I thought I wanted to do something I love, which is fund-raising," she says. She feels for her peers who can’t go out for fear of getting sick. "That makes me feel not really good, because I'm playing in a bar two nights a week. But you've got to weigh it. Is it sitting at home and watching a movie, which you don't really want to do, or is it going after my passion, which is drumming in a smoky bar?"

"My parents have always treated me like I don't have CF. It's not going to stop me from doing anything."

Advice: Dedicate yourself to living as fully as you can with your disease, and help beat your disease, like Emily.

Read another hero story.

Thanks to Natasha Robinson for the source article in the May 11 issue of the Philadelphia Inquirer.

Not just a job: A compassionate nurse

Karen Becker's Nomination Letter:
Gail Benedetti was my nurse in the days and nights immediately following my Whipple procedure (a complex gastrointestinal procedure). After more than 7 hours of surgery, I was in no shape to advocate or care for myself. The surgeon may have saved my life but my nurse made it bearable.

Gail did everything for me, from painlessly removing my nasal-gastric tube to gently giving me a sponge bath. I wasn't her only patient but she made me feel that I was. When I woke up, she was there. When I went to sleep, she was there. Bells and lights went off. Tubes and bags needed changing. Gail was there to make it right. It was uncanny. I didn’t have to worry. My nurse was looking out for me. Because Gail took the time to explain each procedure, medication, and piece of equipment to me, I knew what to expect. That shared information was both comforting and empowering to me as a patient. When pain was an issue, Gail made it her priority to advocate for me. She truly was my angel of mercy. The memory of her unflagging compassion and competence still brings tears to my eyes. I will be forever in her debt.

During my eight days on the ninth floor the Farr Building at BIDMC, I saw Gail interact with other patients, nurses, and the medical staff. She was energetic, engaged, and empathetic at all times. Gail was equally respectful and responsive to the needs and requests of everyone, patients as well as physicians. Gail proves that nursing is not just a job but a calling.

Advice: If your nurse isn't compassionate, politely ask the Nurse Manager or patient care advocate for a replacement.

Read another compassionate nurse story.

Thanks for the source article in the Sixth Annual Boston Globe "Salute to Nurses" advertising supplement in the May 4 issue.

It worked like a charm: Alcohol monitor ankle bracelets

Dr. Howard Markel's story:
Like most patients assigned to my substance abuse clinic these days, John, a stylish 22-year-old cosmetology student, did not arrive voluntarily.

John had had two drunken driving violations, one in which another driver was injured. A judge had ordered John to attend my weekly recovery group for young adults facing legal trouble. The judge had also ordered him to obtain and wear a boxy plastic ankle bracelet – a SCRAM – Secure Continuous Remote Alcohol Monitor.

The SCRAM records his alcohol intake by measuring air and perspiration emissions from the skin every hour. Once a day, John goes to a modem so it can transit data from the last 24 hours to a monitoring agency and his probation officer. "SCRAM keeps me from even thinking about drinking," John said.

Last year, American judges ordered SCRAM devices for thousands of defendants released on bond and awaiting trial for alcohol-related offenses, those sentenced on probation, and under-age drinkers.

Yet the device is not perfect. When John was chosen by a favorite instructor to work on a fashion show at the airport, he worried about how to inform her before security personnel discovered it. I urged him to be honest, and fortunately the teacher proved to be entirely supportive. She suggested letting the others in their group pass through security first and a little later, explaining the situation to the inspectors. "It worked like a charm," John told me the next week.

John is beginning to understand the severity of his alcohol addiction and how it threatens his life and well-being. Over the past five months, he has remained sober and has made significant progress.

One could argue that SCRAM and the threat of jail bought those five months of sobriety and treatment for John. As a physician, I remain uncomfortable aiding and abetting coercive methods like SCRAM. But this concern is overshadowed by a far greater one surrounding his long-term health. Soon John will "graduate" from his court-supervised treatment. His real test of recovery begins the day his SCRAM device is removed from his ankle.

Advice to families of problem drinkers: If your drinker has been involved with the criminal justice system, consider asking law enforcement officials about SCRAM.

Read another recovery story.

Thanks to Dr. Howard Markel for the source article in the May 6 issue of the NY Times.

Put it in writing: Wrong site knee surgery

A surgical team at a southern California hospital made repeated errors that led to a patient operation on the wrong knee, according to a state investigation that was just made public. Even after the patient noted what knee needed surgery, the surgical team still performed the operation on the wrong side, the report says.

The surgery schedule incorrectly indicated that the patient was to have surgery on the right knee. During a preoperative interview, the patient told a nurse the surgery was for the left knee. That nurse then notified the anesthesiologist and the surgeon about the correction.

Hospital records show the word "right" was crossed out and the word "left" was written in by hand, according to the state report.

Another nurse told state investigators that the left knee was marked for surgery but she incorrectly prepared the right knee for surgery. The patient was not asked to verify the correct knee, nor was the patient's history reviewed before the surgery, as called for in the hospital's protocol, the report says.

Before the surgery, the surgeon read out loud that the surgery was for the right knee.

The error was discovered when the patient woke up in the recovery room and pointed out the mistake, the report says.

Advice: Put it in writing. On your own skin, write "the right place to operate" and "do not operate here" on the wrong place, before surgery.

Read another wrong site surgery story.

Thanks to Courtney Perkes for the source story in the May 7 issue of the Orange County Register.

Their commitment to stem cell research: San Diego Consortium for Regenerative Medicine

The California stem cell institute Wednesday awarded $271 million in grants to 12 institutes for the construction of buildings to house stem cell research.

Among the funding was a $43 million grant to the San Diego Consortium for Regenerative Medicine for the construction of a building in Torrey Pines where scientists from four major institutes will combine efforts in stem cell research.

In the proposed $115 million building to be built near the Torrey Pines Gliderport, teams of scientists from across San Diego will collaborate in efforts to unlock the regenerative mysteries of stem cells and how they can be used to address critical health issues.

The San Diego consortium, and the 11 other grant recipients, have committed to invest a total of $560 million from charitable donations and their internal reserves to construct the facilities, bringing the total statewide investment in new research space to $831 million.

"As a patient advocate, I am inspired by the amount of leverage California research institutions have contributed from their charitable donors and from their reserves," said Robert Klein, chairman of the state stem cell institute.

"Their incredible commitment underscores the promise that stem cell research holds for patients suffering from chronic disease and injury," Robert said. His son is such a patient, motivating Robert to become a champion of such research.

The San Diego consortium, which includes University of California San Diego, the Burnham Institute for Medical Research, the Scripps Research Institute and the Salk Institute, plan to build a four-story building, with a basement, full of research equipment, on a 7½ -acre parcel at North Torrey Pines Road and Torrey Pines Scenic Drive. The land, owned by UCSD, is valued at about $15 million and is within walking distance of all four member campuses.

Scientists from all four member institutions will work there, combining expertise on stem cells as well as bioengineering, computational biology, chemistry and clinical sciences. The idea is that by sharing their resources and different expertise, the four institutes will be better equipped to bring new therapies, diagnostics and research tools to market more quickly and efficiently.

The structure the scientists envision would meet federal requirements for a green building and would contain 23,740 square feet of laboratory and support space. Labs would be built without walls separating them. There would also be a cafeteria, as well as an auditorium, to be named for the philanthropic donor, whose name has not yet been announced.

The center will be a highly visible symbol of the region's commitment to stem cell research, and a place where the taxpayers footing the bill can see what progress their money has fueled, said Dr. Edward Holmes, the consortium's president and formerly head of UCSD's medical school.

The San Diego consortium expects it needs to raise at least $72 million to complete funding for the center. And it expects to spend $40 million in faculty recruitment and other costs, bringing the total for the new San Diego Center for Regenerative Medicine to $155 million.

Investment in research infrastructure to extend California's state-of-the-art research capacity is a critical part of the strategic plan established by the California Institute for Regenerative Medicine. The institute was created under Proposition 71, a $3 billion bond initiative approved by state voters in November 2004, to fund stem cell research. The initiative makes California the leader globally in funds dedicated to stem cell research.

Because of the ability of stem cells to evolve into the more than 200 types of cells in the body, the field is believed to hold the promise of curing diseases such as diabetes, Parkinson's and Alzheimer's.

All the institutions receiving these major facilities grants have agreed to expedited construction schedules that will deliver nearly 800,000 square feet of facilities with researchers in the labs within two years.

"This will go a long way toward medical research that could save lives and improve them for people with chronic diseases," Gov. Arnold Schwarzenegger said in a statement Wednesday.

Advice: Fight your disease by channeling your energy like Robert Klein.

Read another story about Robert Klein’s work.

Thanks to Terri Somers for the source story in yesterday's issue of San Diego Online.

What's risky for teens is parents: Insulin pumps for controlling diabetes

Many newspapers described the FDA study by Dr. Judith Cope and others in this month's issue of the medical journal Pediatrics on the risks to teenagers of insulin pumps for their diabetes. Here’s the reaction of Reagan Schweers' mom, from her blog:

"Insulin Pumps Risky for Teens" was the title of an article I read in the Dallas News this morning. Right next to the article was a picture of my son's insulin pump.

I read the article with a fairly open mind. I know that the idea of a headline is to grab attention. Ok, so I was grabbed. The article wasn't especially informative so I got online to check out the "study" that was mentioned. The study was from a well-known medical journal, Pediatrics. Since I worked in pharmaceutical sales and have read MANY medical articles, I'm not afraid to wade through the data to figure out what the study really said.

 So here's my take on things.

What the FDA found over the course of 10 years of data was that teens do risky things and aren't the best at caring for their $6000 medical device. Many of the incidents that had occurred were due to teens doing stupid things - dropping their pump, ignoring error messages, ignoring alarms, not checking their infusion lines. Of course, my question in all this is, since when is it the sole responsibility of the TEEN to do what the PARENT should be doing? Folks, diabetes is a serious long-term disease. Why would you not review your teen's blood sugar numbers? Why would you not make sure they are using their pump properly? This is a matter of life and death and you are FOOLISH as a parent to ASSUME that your teen is doing everything perfectly.

 I must admit that my son takes care of his pump and his diabetes 100% himself. He is FASTIDIOUS about keeping his blood sugar in control. But my husband and I always check behind him. His endocrinologist checks behind him. The diabetes educator in the endocrinology office checks behind him. And his HbA1C doesn't lie. If it's off, then we know he's not controlling his blood sugar or something is amiss with the pump.



In order to get a pump in the first place, the endocrinology office made Reagan test drive a pump for 4 days to see if he'd like it or not. You also have to go through their training program to even be considered for a pump. Then the pump manufacturer representative came to our house to train us extensively for using the pump. Reagan and I both reviewed the materials that came with his pump.



What we have had with his pump is MUCH better diabetic control of his blood sugar. This means (and is scientifically proven) that he will have less chance of losing his eyesight, losing a kidney or even a foot later in life. He has more freedom to live a "normal life" than he did giving himself multiple injections per day. We are able to closely titrate his insulin dose round the clock with the pump - much closer than we could with multiple injections of insulin.

AND...we just got the new continuous glucose monitoring system and he will be trained on that on Wednesday. He will be able to tell 24/7 - anywhere - anytime - what his blood sugar is. I can't tell you how important that is given the fact that he is will soon be driving solo. Or how important it will be when he's participating in a marching band competition and can't carry his blood sugar test kit with him everywhere. And, NO, insurance wouldn't even pay for it...(but that's a blog for another day).



I guess what makes me most frustrated is that this now gives insurance companies more ammo to say "no" to a device that has given many teens and their parents enormous freedom and peace of mind. In fact, the majority of teens who use an insulin pump will live longer and healthier lives - check that 10-year study. Honestly, what's risky for teens is parents who aren't involved in their lives. It's a partnership with your teen and the endocrinology staff. The pump is the best thing that's happened to Reagan as a diabetic.

Advice: Managing your child's diabetes calls for a partnership of you, your child, and the endocrinology staff.

Read another story about partnership in diabetes care.

Thanks to Reagan Schweers' mom for the source story in her blog, "A little of this and that."

A "do it now" kind of guy: Slow medicine at the end of life

Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of "slow medicine," an approach that encourages less aggressive – and less costly – care at the end of life.

At the end of her husband's life, she was spared extreme options because she lives at Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School where it is possible – even routine – for residents to say "No" to hospitalization, tests, surgery, medication or nutrition.

Her husband, Charley Gieg, was 86 at the time, and was suffering from a heart problem, an intestinal disorder, and the early stages of Alzheimer's Disease when doctors suspected he also had throat cancer. A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. His wife doubted he had the resiliency to bounce back. She worried, instead, that the treatments would usher in a prolonged period of decline and dependence. This is what the Giegs feared even more than dying, what some call "death by intensive care."

During her husband's out-of-town consultation with a doctor, Edie stayed in touch by email with a nurse practitioner (NP) at Kendal.

"It is imperative that none of this be rushed! Think about all the what-ifs," wrote the NP. The doctors the Giegs had chosen, she wrote, “tends to be a 'do-it-now' kind of guy." The NP asked whether Charley would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate his dementia?

"Those are the very questions in my mind too," Edie replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.

Outside of Kendal, it is rare for patients and their families to make these vital decisions. As the chief medical officer for UCLA Medical Center explained, the culture at an acute care hospital "has a built-in bias that everything that can be done will be done." The pace of care at the hospital, he added, discourages "real heart-to-heart discussions." Once a patient is drawn into that system, "it's really hard to pull back from it."

Advice: Decide how you want to live your life – even at the end.

Read another end of life story.

Thanks to Jane Gross for the source article in today's NY Times.

His family was hopeful he would fully recover: Enterobacter Aerogenes infection

On September 2, 2006, 27 year old Josh Nahum was injured in a skydiving accident near Boulder, Colorado. He had broken his femur and fractured his skull and was admitted to the Intensive Care Unit (ICU). His family was hopeful that, even though the doctors believed Josh would have a long road ahead, he would, with rehabilitation, fully recover within a year or two.

During his recovery in ICU he suddenly developed a bacterial infection - Staph. His neurosurgeon prescribed Vancomycin which cleared it up. As the weeks went by, Josh began to get better, even taking brief walks with the help of his walker and his Physical Therapist, Brian.

After 6 weeks or so in ICU, he was transferred to a nearby Rehab facility until he suddenly developed a 103-degree fever and was sent back to ICU. Tests reported that Josh had yet another bacteria named "Enterobacter Aerogenes." 

On Monday, October 9th Josh coded and stopped breathing, becoming comatose with no respiratory effort whatsoever. The Emergency Room was called and he was put on a ventilator. An excessive pressure buildup on his brain due to the bacterial infection caused a portion of his brain to be pushed into his spinal cord, permanently interrupting his ability to breathe on his own as well as his ability to move his head, arms or legs ever again. 

In a matter of moments, Josh had become a ventilator dependent quadriplegic. Less than two weeks later, he died, not from his original injuries, but from complications arising from virulent bacteria he caught in ICU.

Advice: Help strangers protect themselves against medical errors by telling your stories widely, as Josh's mother, Victoria Nahum, has been doing.

Read another young athlete’s hospital infection story.

Thanks to Victoria Nahum for the source story in hospitalacquiredinfections.blogspot.com and to Adam Gee and Elizabeth Cohen.

Medical negligence acknowledged in detainee's cancer death: A lawsuit

The federal government has acknowledged it was negligent in the death of an immigrant whose cancer went undiagnosed for nearly a year while he was in custody at the San Diego Correctional Facility.

The government last week acknowledged medical negligence, an allegation contained in a lawsuit filed by the family of Francisco Castaneda, 36.

"Was there medical negligence and we're saying yes," U.S. attorney's spokesman Thom Mrozek said yesterday. The claim carries maximum damages of $250,000, he said.

Francisco, an illegal immigrant from El Salvador, was placed in immigration custody after serving an eight-month state prison sentence on a 2005 drug conviction. While at the San Diego facility, he notified immigration officials that he had a large, painful, growing lesion.
Despite recommendations from several doctors, the cancer was never biopsied and Francisco received no treatment except for pain pills during his 11 months in detention, government records indicated.

Francisco was released last year, went to a hospital and was diagnosed with metastatic squamous cell carcinoma. He died in February.

Advice to families of detainees: Advocate vigorously for your relative's health while they are in custody.

Read another detainee’s story.

Thanks to the Associated Press for the source story, printed today in SignOnSanDiego.com. Staff writers Jose Luis Jiménez, Pauline Repard, Mike Lee and Sandra Dibble contributed to this report.