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.

A perfectly normal life, getting into trouble with the press: Geraldine Ferraro's multiple myeloma

Geraldine Ferraro's story:
Former Congressional and Vice Presidential candidate Geraldine Ferraro of New York will be the keynote speaker at the second annual "Reaching for a Cure" gala on Friday, May 2, at the Weston Boston Waterfront Hotel, funding research in multiple myeloma for the Dana Farber Cancer Institute.

I had run for the U.S. Senate in 1998, and was finding that I couldn't get up in the morning or stay up late at night; I was just too tired.

I went to my doctor for my annual checkup. He told me that I had either leukemia, lymphoma, or multiple myeloma. The prognosis was three to five years, but he said some patients had lived ten years and were still going strong.

Then my internist sent me to an oncologist/hematologist, and they said we should get an expert in multiple myeloma – Dr. Ken Anderson. He has been been caring for me ever since.

I was put on Aredia once a month. Later, I took thalidomide, and it helped a lot. When the cancer became active again, I went through another clinical trial for another new drug therapy with Revlimid. In December 2004 the doctors harvested my stem cells. I had the transplant in June 2005, the year I turned 70. But ten months later the cancer was active again, so I was put on Velcade. With the treatment, I live a perfectly normal life, giving speeches and getting into trouble with the press.

In 2001 I went public with my disease to help researchers get congressional hearings. I testified to Congress. Friends like Senators Patty Murray, Kay Bailey Hutchison, and Barbara Mikulski also knew about my disease, and they sponsored a research bill, the Hematological Cancer Research Investment and Education Act of 2002, and the Geraldine Ferraro Cancer Education program, to educate medical, patient, and policy communities on research advances.

The message is: If diagnosed, this cancer is not the end of the world. There is so much research today, and we can live with multiple myeloma as a chronic disease.

Geraldine Ferraro's advice: Patients need to be informed consumers: If your doctor is not a specialist, contact the people who are. Dana-Farber will answer questions from any doctors who reach out. Press for health care for all, so others can be treated. We have to address the high cost of cancer drugs. Write to your representatives.

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

Thanks to Katie Smith Milway for the source article in the April 10 issue of the Needham [Massachusetts] Times.

Listening to Leviticus: Transfusions for a Jehovah's Witness

Dr Bruce Campbell's story:
I had met the man lying on the operating table before me two weeks ago. Physically, he was substantial and rough-hewn with clear, intelligent eyes and an engaging, peaceful demeanor. A series of studies revealed a large mass of a goiter into his upper chest, though there were no signs of cancer.

During the initial office visit, we covered the standard discussion of surgical risks. I presented each and discussed prevention and management.

"Doctor," he told me, you have to know I am a Jehovah's Witness." He smiled and matter-of-factly outlined his convictions without any hint of embarrassment or sign that he was primed for an argument; he readily acknowledged that there might be real and serious consequences if he started bleeding during the operation. I was only too aware that the tenets of his faith prohibit the use of any blood transfusions. Despite the risks, he remained completely serene. My anxiety, on the other hand, started at that moment to take shape.

Would he refuse all types of transfusions? Yes. Would he agree to donate blood ahead of time in case we needed to transfuse it back to him? No. Could we salvage his own blood, process it, and return it to him during the operation? No. Did he realize that his blood cell count might possibly get so low that it could be very dangerous? "Doctor, I understand completely that by refusing blood transfusions, I might die. That is the choice I have made, and I am very comfortable with that choice. I have faith that things will go just as they are meant to go."

Now, on the operating table two weeks later, things were not going as well as I had hoped. The muscles had been difficult to separate cleanly from the superficial surface of the thyroid gland. The limited space between the bone of the spine and the bone of the sternum was completely filled by the mass.

As I repeatedly advanced my finger into the unyielding space, I was aware of the firm pressure pushing back at me. I continued to second-guess myself: What had I so quickly agreed to operate on him?

Again I pushed. Then again. Suddenly, something deep and unseen gave way and the goiter noticeably moved upward into the palm of my right hand. I filled the space behind it with surgical sponges.

Then I carefully removed the sponges one by one. A pool of blood appeared in the cavity. I held my breath and stared for several seconds, finally convincing myself that nothing was welling up from below. I began to breathe again.

What emergency course of action might I have recommended if he had experienced a massive hemorrhage during the operation? Would I have tried to force his family to consider a lifesaving transfusion? I was still not certain.

Advice: Express your moral and religious values clearly to your doctors.

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

Thanks to Dr. Bruce Campbell for the source article in the Feb. 27 issue of the Journal of the American Medical Association.

Medicare could have paid for an entire preventive health program: End of life care

Dr. Sam Forman's story
My mother, Rose, was a 4'11" firecracker of South Philadelphia womanhood. She fit a disproportionate interest in humanity and a high decibel level into a small package. That came in handy when she worked during World War II as an inside riveter in the nether regions of B-24 Liberator bomber tail sections: she was a real life Rosie the Riveter.

Much later, in her 80s, she was struck by a heart attack. Over the course of a year, she became the consumer of a dizzying array of specialist physicians and nurses, high-tech diagnostics, cardiac surgery, novel pharmaceuticals, therapeutic devices, and specialty-care facilities. As the family member most suited to be her guide through the maze, I was struck by the providers of all stripes posed with hair triggers to unleash the most novel, the most innovative, and coincidentally the most expensive therapies. After initial treatment reversals leading to scant hope of returning to the independent life she treasured, the collective system would not hear the patient Rose's desires for a less aggressive, more personal and dignified approach.

After her ordeal finally ended, my siblings and I noted that what Medicare had spent on our mother could have paid for prenatal care in broad swaths of inner-city Philadelphia, or an entire preventive health program in some third-world country. All Rose had wanted was to pass on quietly to, as she viewed it, rejoin her husband, Akiba, who had died 10 years before. All the while, providers, institutions, and suppliers were doubtless counting their consumer scorecards. I suspect that the fruitless surgical interventions were probably counted as successes, given what I know about the definitions and time frames of such total quality measures in the increasingly consumer-oriented clinical world.

We can do better for Rosie the Riveter and, indeed, for ourselves and American society.

Advice: You can opt out of aggressive care. Consider hospice care for gravely ill family members.

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

Thanks to Dr. Sam Forman for the source story, published in the Spring 2008 issue of Q3, a publication of the Yale School of Organization and Management.

An epic battle, for no reason: Undiagnosed vision problems in returning Iraq veterans

Army Staff Sergeant Brian Pearce came home from Iraq with 20/20 vision – and a diagnosis of legal blindness. It has taken him much of the lat 18 months, since he arrived home on a stretcher with severe injuries from the blast of an improvised explosive device, to make sense of that paradox.

Dr. Kara Gagnon, director of low vision optometry at the West Haven, Connecticut veterans hospital, explained that "your eyes are healing. It's your brain that won't allow your eyes to work the right way." Shrapnel had penetrated his skull and jarred his brain, damaging his optic nerves.

Since a binocular dysfunction keeps his eyes from working in unison, Brian had been straining his upper body to compensate, and was bothered by headaches and neck pain.

When the brain is jostled by a blast, the force can disrupt the circuitry that allows the eyes to work in unison or to process the entire visual field. Double vision, trouble focusing, and poor spatial orientation can result from TBI. Some can be fixed easily with corrective lenses or other adaptive devices; others can require extensive therapy to retrain the brain and eye muscles.

Through six weeks of intensive therapy in her clinic, Brian learned how to navigate a disjointed visual field and to compensate for the permanent loss of his peripheral vision. The therapy and special prism glasses have eased his problems.

But Brian is the exception; most veterans with his condition are not diagnosed appropriately. In their recent report, Government Accounting Office investigators wrote that only one of the nine VA facilities they reviewed was referring all veterans with traumatic brain injury (TBI) to a vision specialist.

There are many veterans like Brian. Last week, a study by RAND Corporation found that about 320,000 service members have likely experienced a traumatic brain injury during their deployment. Last November, doctors at the VA hospital in Palo Alto, California reported that 74% of veterans they studied with TBI and other traumatic injuries reported vision problems. This implies that up to 80,000 veterans have undiagnosed vision problems.

Meanwhile, the Defense Department has taken only the first steps to set up a center of excellence. Though Congress authorized an affiliated eye center, plans for it are in limbo. "This has turned into an epic battle, for no reason," says Thomas Zampieri, director of government relations for the Blinded Veterans Association.

Advice to families of returning Iraq veterans: Ask their primary care physician to ask the veteran about headaches, double vision and trouble reading.

Read another Iraq veteran’s TBI story.

Thanks to Lisa Chedekel for the source story in the Hartford Courant of April 20.

Don't save me because we're friends: Affective error by physicians

Dr. Karen Delgado [not her real name] is an acclaimed specialist in endocrinology and metabolism at a large urban teaching hospital. She cares for patients with hormonal and metabolic disorders such as diabetes, infertility, and hypothyroidism.

Dr. Delgado has genuine affection for many of her patients, so I asked whether she had ever fallen into the trap of affective error [where a doctor's feelings about a patient cloud clinical judgment]. She answered, "I had an elderly patient with thyroid cancer and considered treating him with radioactive iodine. There are difficult logistics involved with the therapy, and it really can disrupt the person's life. I was just about to refrain from treating this man when he said to me: 'Don't save me from an unpleasant test just because we’re friends.'"

Dr. Jerome Groopman's Advice: In severe circumstances, the family or friends of patients who realize that a doctor's affection may stay his hand at times can address this concern by saying, "You should know how deeply we appreciate how much care you show. Please know also that we understand you may need to do things that cause discomfort or pain."

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

Thanks to Dr. Jerome Groopman for this excerpt from his book, How Doctors Think.

All he had to do: After the kidney transplant

Of course he had a right to be ecstatic. After many years on the waiting list for a kidney, his turn had come. He grabbed my arm and pointed to the urine that had collected in the tubing next to his hospital bed, the first visible evidence of his new kidney.

"Working like a charm!"

In a few days, he was discharged home to enjoy his new life, free from dialysis.

When I heard his name again, nearly a year later, I was immediately curious.

"I'm going to kill him!" The nurse practitioner who coordinated transplant care gestured over her shoulder to the numbers on the screen. The new kidney was barely functioning. "He stopped coming to clinic – I’ve been calling him for weeks."

He had stopped taking his immunosuppressive medicine two months earlier. Now his body was rejecting the kidney.

Once he was admitted to the hospital, I learned the reason. He'd had no side effects from the medicines; he had excellent insurance coverage, and a loving and supportive family. All he had to do was take pills twice a day, and he was free of the four-hour dialysis sessions that had been a part of his life for years. He could eat and drink whatever he wanted, travel, sleep in – as long as he took those pills.

He explained that it had started when he skipped a dose by accident, and nothing happened. Then he went a way for a week, without his pills, and again, nothing happened. Wasn’t the transplant supposed to make him well?

I realized there must be something profound that I did not yet understand about being sick, despite working with sick people every day. Cause and effect, interventions and outcomes, costs and benefits: these are easy to contemplate when someone else has to take the pills twice a day, sit in the chair for four hours, have blood drawn every week. For my patient, being hooked up to a dialysis machine was one kind of illness, and taking pills that protected a new kidney from failure was another. Maybe for him there was only one kind of freedom, and it happened for a few days on holiday: no pills, no symptoms, no doctors, no disease.

Advice: If you don’t want to take all your medicine, discuss reasonable alternatives with your doctor.

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

Thanks to Dr. Dena Rifkin for the source story in today's NY Times.

Medicine for the brain: The role of exercise in fighting depression

On Monday mornings, Theo Baar's exhausting depression often tries to seduce him into just staying in bed. But then, he says, a staffer at Appleton House, a residence for people with psychotic disorders at McLean Hospital, comes into his room and says, insistently, "You want to go work out."

So Theo, a 22-year-old surfer and musician, drags himself to McLean's new gym and sweats through a half hour of weightlifting presses and curls. And then, he finds, he doesn't want to go back to bed. And more: his confidence is pumped up. Hs thinking tends to be less delusional, more reality-based.

"Working out helps me get my self back," he says.

His experiences reflect the recent findings of careful research: exercise may be as good for your brain as it is for your body. Evidence suggests that exercise helps reduce mental health problems, including depression, anxiety, ADHD, addiction, stress and aggression.

"Exercise may be an effective treatment for patients with clinical depression, comparable to other established treatments such as antidepressant medications," says Dr. James Blumenthal, a professor of medical psychology at Duke University, who had led some of the seminal recent studies. Other studies suggest that exercise may be as effective as psychotherapy as alleviating depression.

"Exercise is medicine for the brain," says Dr. John Ratey, a Cambridge psychiatrist and author.

Advice for people struggling against depression: Find a fun form of exercise.

Read another exercise story.

Thanks to Carey Goldberg for the source story in today's Boston Globe.

In pajamas with his weapon: Mental illness among Iraq veterans

One marine found himself outside patrolling his yard in the middle of the night in pajamas with his weapon. Others need their weapon beside them when they sleep. The adrenaline is so high for returning military that they avoid situations that drive it up, e.g., amusement parks and driving. Symptoms of anxiety also make loud noises difficult to take. One Army wife said, “My husband didn’t sleep for six months.” Anger issues were prevalent: “They go off at the simplest things,” said one spouse.
-comments of veterans and spouses in focus groups for the recent RAND study

While mental health problems are common, many veterans receive no treatment, or far too little treatment. Almost half of those who brought their problems to the attention of a health professional in the preceding 12 months did not receive minimally adequate treatment (eight sessions of psychotherapy or medication). Nearly 60% of soldiers who experienced a probable brain injury during their deployment have not been evaluated for this condition by a physician or other health specialist.
-Key findings of RAND study, Invisible Wounds of War.

Advice to spouses of Iraq vets: Insist on getting professional help for your spouse.

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

Thanks to the RAND researchers for their study, Invisible Wounds of War.

I am incredibly and eternally grateful: Early detection of cancer through digital mammography

As a woman whose first digital mammogram revealed a potential abnormality, I was calm for the repeat imaging, expecting it to be normal on the second look.

My anxiety increased, however, during the next few months as I progressed to a series of more elaborate, more invasive tests and biopsies, and a diagnosis of a small, in situ cancer, now successfully treated.

Despite the extremely harrowing, sleepless and depressing few months (mostly spent waiting for the next procedure), I am incredibly and eternally grateful for digital mammography and for its medical practitioners who made my very early diagnosis possible.

Sally Chrisman's Advice: Don’t delay your mammograms, even if you are anxious about a possible call back. Early detection definitely saves lives.

Read another mammogram story.

Thanks to Sally Chrisman for writing to the editor of the NY Times, published in today's issue.

Only these four words of welcome: The role of prayer

It was one of those beautiful winter days after Hanukkah….I sat waiting in the outer office. Finally, I was ushered in. There were no smiles, no polite exchanges, nothing that softened the numbing reality I was about to face. Only these four words of welcome: "Your wife has cancer."

That day in the surgeon's office and the journey of the spirit that followed were the greatest challenges of my personal faith in God – and that of my family – that we ever experienced. It is part of this challenge that I share here. I offer a brief glimpse into our own struggle, hoping that it might help you with yours.

Three items proved most helpful and effective. One: we discovered that all human beings, even rabbis and their families, struggle, have doubts, and have lapses of faith. Two: like others, our faith was in desperate need of repair. It was my wife's courage and conviction in the face of her illness that allowed us to pray unabashedly to God. Through prayer and the process of spiritual renewal, our faith was literally restored to us. Three: we learned that we all need a rabbi, someone to lead us through our crises of faith, a madrich ruchani (spiritual mentor) to support us in our journeys. The rabbis of the Talmud wrote, "One cannot fully understand Torah unless one has stumbled in it." Sheryl’s cancer caused us all to stumble, but we did not fall.

We don’t know where the cancer came from, but during her illness, Sheryl taught our family that faith means not to passively accept what life deals you – whatever it is. Rather, we must seize life and struggle with it, using the force of disease against itself, not against the self – which we are prone to do. Physicians do not set the parameters for our struggle. We set the terms, always striving to remain in control, trying not to allow the disease to get the upper hand. This posture is bolstered by faith in ourselves, reflective of faith in God and the covenant we share with the Divine. Faith is the force in the world that makes for healing.

Frequently, we think of prayer in terms of the "how-to" of the liturgical process: what to say, how and when to say it, and which ritual accompaniments are required. Our family learned that we could not nurture our individual relationships with Almighty God without essential prayer. In the face of cancer, perhaps even because of it, we learned to allow the words articulated by those who came before us to truly sing through our own souls – while adding our own – and then our prayer became the powerful force in the universe that we always hoped and prayed it would be.

A spiritual teacher helps us to learn how to reach out to others, inward to self, and upward to God in order to gain inner strength, tranquility of spirit, and healing of body and soul. Like so many others, our family had taken its spiritual journey for granted. Through our encounter with Sheryl’s illness, we were reminded about it

I thank God each day that we are alive to celebrate. For us, that indeed is the miracle that we recall not only during the eight days of Hanukkah, but every day throughout the year. May you join us in the celebration, finding strength in the journey and faith along the way.

Advice: Pray with your loved ones for strength.

Read another story about faith.

Thanks to Rabbi Kerry Olitzky for the source, “Facing Cancer as a Family.”

I’ve used my unexpected fame: Last Lecture of Prof. Randy Pausch

Carnegie Mellon Prof. Randy Pausch was diagnosed with pancreatic cancer, and was invited to give a last lecture. It is now widely available on the Web.

After I gave my lecture in September, I expected to go home and quietly spend time with my family. I never imagined that my talk would be viewed online by millions worldwide. The response has overwhelmed and moved me. Thousand of people have written to me about their life lessons. I've also been buoyed by former students who've told me how my teaching made a difference to them. There's no greater gift for a teacher.

I've used my unexpected fame to advocate for pancreatic cancer research. Last month, I testified before Congress to seek funding for my disease, which is considered the deadliest of cancers.

I've had great fun too. In my lecture, I told of two childhood dreams: playing in the NFL and being Captain Kirk on Star Trek. Strangers fulfilled those wishes. I was invited to scrimmage with the Pittsburgh Steelers and got to say a line in a new Star Trek film. Both experiences were thrilling.

I'm lucky to be living longer than I expected, allowing me more time with my kids. I've tried to do unforgettable things with them – such as swimming with dolphins – so they'll have concrete memories of us and of my love for them.

I am honored that my lecture will live on and that people have found it beneficial. Honestly, though, the talk was for my kids, and it gives me comfort to know that they will one day watch it.

Advice: Say your most essential messages before it's too late.

Browse for related stories in the index at the very bottom of this page, or see a video of his moving congressional testimony last month.

Thanks to the writers of Parade Magazine for the source article in their April 6 issue.

Her nursing home wouldn't call an ambulance: Arbitration to pre-empt lawsuits

Mary Hight had moved into a nursing home when she reached her late 80s, in 2002. She was diagnosed in 2003 with congestive heart failure, though she was otherwise in good health and continued to vacation with her family, according to her son. "Mom, at 90, would be on the beach in sunglasses and a bathing suit," he says.

But in 2004, when the 92-year-old woman fell ill for days and became badly dehydrated, her nursing home in Kosciusko, Mississippi, wouldn't call an ambulance, despite her daughter's urging. Instead of seriously assessing the situation, nursing home staff engaged in a diatribe with Mary's daughter Janice about the costs of an ambulance. Her daughter, Janice Cowart, pushed her mother uphill in a wheelchair to a nearby emergency room. But her mother died from heart failure the next day.

The family was surprised to realize that when her mother had entered the nursing home, Janice had accepted a nursing home contract requiring binding arbitration to resolve disputes. The arbitrator found the home was negligent both in allowing Mary to become dehydrated and failing to get her to an emergency room. But he awarded only $90,000 to the family, saying an underlying condition could have caused Mary's death. He chose not to award punitive damages. After paying the lawyers, "we didn't get one cent," said Mary's son. The nursing home has denied wrongdoing, and has declined to comment.

The nursing home industry's arbitration strategy is part of a much broader response by U.S. companies to consumer lawsuits. Nursing homes have been among the biggest converts to the practice since a wave of big jury awards in the late 1990s.

The American Arbitration Association – the biggest arbitrator – frowns on agreements requiring arbitration in disputes over nursing home care and generally refuses such cases. The American Health Lawyers Association also avoids them.

Advice to adult children looking for a nursing home for frail parents: Question admissions personnel closely. If an arbitration agreement is mandatory, write on the contract that you're being given no choice. Write, "I'm signing this because I was told I have to."

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

Thanks to Nathan Koppel for the source article in the April 11 issue of the Wall Street Journal.

We now have a perfect little girl: Rare genetic disorders

Jenny Badner Falcon's story:
I carried two severely deformed, unviable pregnancies that were diagnosed in the second-trimester anatomical sonogram and would have likely led to stillbirth or death soon after birth.

It was only after a second detailed autopsy was performed by a dedicated and caring pathologist at Columbia University that a team of geneticists was able to give us a diagnosis. My husband and I are carriers of an extremely rare genetic disorder. But thanks to the autopsy and the diagnosis, we were able to have our third fetus tested during the first trimester and we now have a perfect little girl.

Advice to couples who have had more than one miscarriage: Jane Brody is correct to emphasize the importance of autopsies in recurrent pregnancy loss.

Read another rare genetic disorder story.

Thanks to Jenny Falcon for her letter to the editor, published in the NY Times of April 9, and to Jane Brody for her article in the Times on April 1.

Just bring the patients back: Digital mammograms to detect breast cancer

Nancy Liber, a radiologic [mammography] technician at a center that just acquired new digital mammography equipment, was called back by her own colleagues at the center after her mammogram last month.

"I thought exactly what every woman does," she said. "Immediately you panic and think, 'Oh my gosh, what if something is really wrong?!'" She found herself worrying about what would happen if she became ill and unable to take care of her children. She did not even tell her husband what had happened until after the second test, which turned out normal. The concerns were due entirely to the difference between film and digital images. Despite the stressful experience, she said that from what she had seen in her work, digital mammograms were the way to go. "The inconvenience it may cause is worth it. But I definitely know what these women are going through [from the many additional mammograms that physicians are requesting as they learn how to interpret the new digital mammograms]."

Doctors are learning how to interpret images from the digital machines that are replacing the older equipment. One physician explained to her audience of radiologists: "When you first start out, you may feel a little anxious and recall more patients because everything looks like a cancer to you. It's OK. Just bring the patients back. It's part of the learning curve." She said it could take six months to a year to interpret the new images.

The physician at Nancy Liber’s clinic commented, “" know it's not a small thing, the anxiety. Patients are practically in tears because they're so worried. But I think in the long run it's going to be to everybody’s benefit."

Advice to women getting digital mammograms: You might worry less if you realize that doctors are being extra-cautious as they learn how to use the new equipment. To be on the safe side, they're bringing in many women for additional images, and only in hindsight do they realize that was unnecessary.

Read another mammography story

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

Eighteen, to be exact: Adverse effects of dietary supplements

Dr. Richard Nathan, a dental surgeon in San Francisco, wrote in January about a patient who needed a tooth extracted and minor periodontal surgery. She told Dr. Nathan that she was taking two drugs, for cholesterol and blood pressure, neither of which he said would present a problem to safe surgery and normal healing.

Thus, Dr. Nathan was perplexed when the patient returned five days later unhealed, with an unattached flap of tissue, severe bleeding and an infection.

"Based on my 30 years of experience, it looked as though the patient was an out-of-control diabetic or had a severely compromised immune system," he said. "Neither was the case. However, when I asked the patient again what medications she was taking, she admitted that she was on multiple – 18 to be exact – over-the-counter supplements, for a total of 43 pills and capsules a day."

Six of these – green tea, grapeseed, ginkgo biloba turmeric, salmon oil and vitamin E, he said, "are known to increase bleeding due to inhibition of platelet aggregation," the first step in forming a clot. Within a week after discontinuing all supplements, her mouth began to heal normally.

Advice: Ask your pharmacist if your dietary supplements might have unwanted side effects.

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

Thanks to Jane Brody for the source article in Tuesday's issue of the New York Times.

I killed her: My first malpractice suit

I stared down at my name neatly typed next to the word "Defendant." And just below the heading: "Complaint: Wrongful Death Based on Medical Negligence."

Oh my God. Deceased. It was me. I killed her. That's how I heard about my first malpractice suit.

I was the new doctor in the group. I had joined fresh out of residency two years before. I was the first woman doctor in the clinic, and one of only a handful of women physicians in semi-rural Clackamas County.

My last note in Helen Simmons' chart [not her real name] was from last August, a visit for chest pain. I had first met her in my first year in the practice, in December of the year before she died. She had gone to the Emergency Room of the local community hospital with chest pain, and had been admitted overnight for observation by one of my senior partners. Covering for him, I met Helen the next day.

Her chest pain had not been a heart attack, according to blood tests overnight. Her pain was gone. But she was a time bomb, I realized. She had heart disease up and down her family tree, she smoked, and her blood pressure was high.

I told her I was glad she hadn't had a heart attack, but that I was worried she was going to, sooner or later. She could save her own life, I said, by quitting smoking and taking care of herself. She wasn't worried about all that. She wanted to go home and have Christmas with her family.

Her EKG (electrocardiogram) showed she may well have had a prior heart attack, not previously discovered, but that she had not had one just now. Heartburn was the more likely diagnosis, so I sent her home with a prescription for medicine to block stomach acid.

She had scheduled her two-week post-hospital visit with my partner, who had admitted her to the hospital. She told him her pain was better, and the way she described it fit the heartburn pattern. A special X-ray called a barium swallow confirmed acid irritation of the stomach, so my partner gave her another acid blocker prescription.

Two weeks later her time bomb went off. In mid-January she came to clinic with bad chest pain, and I sent her right up to the hospital. It was her first official heart attack. She had quit smoking a few days before. Trying to change her lifestyle, she had tried to exercise.

A few days later, the cardiologists reopened a cholesterol-plugged artery in her heart. After that she could exercise without chest pain and joined a health club. She lost some weight and stayed off tobacco. I saw her every month or two through the winter, spring and summer, congratulating her at every visit for her progress. She was 44.

She came in for a final visit in August, complaining of chest pain. It fit the pattern of stomach pain rather than heart pain. I ran an EKG on her at that last visit, and it was normal – normal for her, that is; it showed nothing new, and even some improvement. I switched her to an even stronger acid blocker. And I never saw her again.

Ten days after that last appointment with me, Helen had died in her sleep. What probably killed Helen was her heart suddenly jumping into a bad rhythm, that didn’t pump blood forward – sudden cardiac death. We don't have any good way of predicting whose damaged hearts are more likely to do that, or when. I couldn't have diagnosed, predicted, or prevented it.

At the trial, there were some surprises. Helen had quit smoking. But her family and friends hadn't, exposing her to secondhand smoke that can increase the risk of abnormal heart rhythms. And in her last visit with me Helen had said she had been able to work out in the gym for hours without chest pain. But her daughter and a friend testified that Helen could only stay on those exercise machines a few minutes before she had to stop and rest until the chest pain went away.

She lied to me. She was playing a role, the role of a good patient. She was telling me what she thought I wanted to hear. Maybe she wanted to hear me congratulate her again on how well she was doing.

I didn't see through Helen's performance. That was the mistake I made. That was my negligence.

I "won" the case and went back to work. I say it was my first malpractice suit. There hasn't been a second – yet – but I don’t want to get overconfident.

Advice: Always tell the truth to doctors.

Browse for related stories in the index at the very bottom of this page, or read a patient-doctor miscommunication story.

Thanks to Dr. Merilee Karr for the source article in Creative Nonfiction, issue #33, 2007.

How easy it is to be silent: Apology for a surgical error

What does not weigh on Dr. John Riley's conscience is silence. [Names have been changed.] As tempting as it was to tell Thelma Jones and her son that a biopsy was planned of her right lung and that the pneumothorax was the unfortunate outcome of a necessary procedure, John Reilly chose to tell the truth. I admire him for that. I know just how easy it is to be silent.

Many years ago, I witnessed an Ob-Gyn make a terrible mistake during a routine hysterectomy. I stood in the Operating Room retracting a patient's belly while he carelessly hacked out her ovary. I stood next to her hospital bed as he lied to her about his mistake.

"We had to take the right ovary, Gina."

"Why? What happened?"

"Jesus Christ, Gina. It was a mess in there."

"I'm sorry."

She apologized. As if it was her fault that he had butchered her ovary.

He offered no other explanation. Yet I did not speak up when this incident occurred. I was a medical student with my career in front of me; he was an attending surgeon. I participated in the complicity of silence.

Advice: Ask for a clear explanation if a medical procedure has not gone as expected.

Browse for related stories in the index at the very bottom of this page, or read a patient-doctor miscommunication story.

Thanks to Dr. Helena Studer for the source article in issue 33 of Creative Nonfiction.

Different kinds of healing: Elective surgery for quality of life

Question: My patient, a devout Catholic, is considering a risky radical abdominal surgery that can't cure her condition but may extend her life for a year. She says she's okay with either outcome, living longer or dying in the Operating Room. I believe she's sincere, even though her daughter feels she's being talked into the procedure by the surgeon. Now the daughter has asked me to tell her mother how horrible the surgery is and that most patients suffer greatly.

I'm sympathetic to her concerns because I've cared for several patients who underwent this surgery and none of them fully recovered. But it's not my place to explain the risks and benefits of surgery to the patient or to intrude on her relationship with her physician. How should I handle this? -S.N., Wisconsin


Answer by Joy Ufema, RN, MS:
This doesn't sound like a patient who's being coerced into doing something she doesn't want to do. Ironically, if she were to choose an intervention and died soon, the daughter could do a complete turnaround and worry that her mom gave up without pursuing all options.

Explain to the daughter that you can't discuss the odds for recovery because every patient is different. Instead, encourage her to talk with her mother in depth about her beliefs and goals. Offer to sit in on the conversation if they wish. Let the daughter hear her own mother discuss her position as a patient with a serious illness. Then support them both, regardless of the outcome.

Advice to family members who are patient advocates: Educate your loved one about the choices, then let them make the important decisions that affect their lives

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

Thanks to Joy Ufema for the source article in the January issue of Nursing 2008.

Vaccines, Autism, and Our Daughter, Hannah

Our daughter, Hannah, developed normally until receiving nine vaccines at once. She immediately developed a fever and encephalopathy, deteriorating into what was diagnosed, based on the Diagnostic and Statistical Manual of Mental Disorders, or DSM IV, as autism.

The federal government, not an "unusual court," made the concession. The decision wasn't careless. It was based on a thorough review of Hannah's records by Health and Human Service doctors.

The National Vaccine Injury Compensation Program does rely on a "preponderance of evidence" standard, which Hannah's case met. It doesn't necessarily compensate families "quickly, generously and fairly." We filed our claim six years ago. Pain and suffering are capped at $250,000, and Hannah has yet to receive compensation.

Dr. Offit's assertion in his recent Op-Ed article that "even five vaccines at once would not place an unusually high burden on a child's immune system" is theory and risky practice for a toddler's developing brain. No one knows if Hannah's mitochondrial dysfunction existed before receiving vaccines. Dr. Offit's claim that Hannah had "already weakened cells" is unfounded.

We support a safe vaccination program against critical infectious diseases. We need straight facts, serious science and speedy answers on these important issues.

Dr. John Poling is a neurologist; Terry Poling is a lawyer and nurse.

According to Dr. Paul Offit, Chief of the infectious diseases division at Children’s Hospital of Philadelphia, in the past few years, parents of 4,800 autistic children have filed claims to the vaccine court which have yet to be heard. Average awards in other recent vaccine cases have been more than $800,000.

Advice to parents of young children: Until the science becomes conclusive, request mercury-free vaccines for your children.

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

Thanks to the Polings for their letter to the editor in today's NY Times.

More triumph than tragedy: Voluntarism by a breast cancer patient

When Georgie Mae Taylor died at age 63 on March 2, the event was more a triumph than tragedy.

When she was diagnosed with breast cancer seven years ago, her prognosis was grim: just a month or so to live.

"I decided to keep on trucking, keep on living," she told a reporter from The Eastern Shore News last fall.

"I had too much to live for."

After giving away much of her jewelry and clothing, Georgie did an about-face and opted for an aggressive course to battle her affliction.

The treatment included more than 300 chemotherapy sessions. She researched her disease and all its treatments.

At that point, she became a patient advocate, her husband, Sam, said.

She also continued the fast-lane pace she enjoyed as an antique collector, activist in Baptist and Methodist church groups, and garden clubber. She was also famous for her wedding bouquets.

"She always stayed busy," Jo Sue Parker, her sister, said.

During her extra lease on life, eight grandchildren were born.

She became a major force in the Shore's Relay for Life, an annual American Cancer Society fundraiser, which received $200,000 last September. She organized a breast cancer support group that continues to grow and encompass other forms of cancer. She volunteered to operate a booth for the local Food Bank.

"The one word to describe her," Sam said, "is inspiration. Anyone down in the dumps over a cancer diagnosis could phone Georgie 24 hours a day. She popped out of bed early in the morning to talk to them because they were scared," he said

Laura Vaughan, director of the Barrier Islands Center in Machipongo, described Georgie as "a miracle amongst us."

"As a cancer survivor myself, she took the fear out of it for me," Laura said.

"She lived such a full life with cancer. All the good attributes of the Eastern Shore came through in her."

During her final week, Laura said, Georgie attended the Barrier Island oyster roast fundraiser and showed up at her garden club meeting.

Advice: Be like Georgie.

Read a story of a plucky breast cancer survivor.

Thanks to Brown Carpenter for the source story in HamptonRoads.com of April 1.

She used her retirement savings: Gastric banding surgery

"I weighed 424 pounds in May 2004, before losing 250 pounds [from gastric banding surgery],”"said Sandi Henderson, a dark-haired woman in her 50s. Gastric banding restricts food intake through an elective surgical procedure in which a surgeon wraps a silicone band around the upper stomach. This creates a small pouch that limits food intake. After it's installed, the doctor makes periodic adjustments depending on the patient's weight loss, food craving, and physical reaction to the band. Patients typically need four to six adjustments in the first year, and two to three in the next two years or so.

Sandi swims every morning and has tossed out her old medications. "I put my food-addiction money toward shopping and exercise," she laughed. Since her insurance specifically excluded bariatric surgery, Sandi says she used some of her retirement savings to pay for the procedure.

Like any major surgery, gastric banding patients have a risk of infection and even death. The silicone device can shift after surgery, causing it to lose effectiveness, or erode into the stomach. No one knows how long it will last inside the body, so patients may eventually need another operation to replace or remove it. And some surgeons say the banding causes a smaller weight loss than do other procedures.


Advice to people looking to lose a lot of weight: Exercise will help keep off the pounds, even if surgery helps you lose a lot of weight quickly.

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

Thanks to Rhonda Rundle for the source story in the March 31 issue of the Wall Street Journal, "Industry Giants Push Obesity Surgery."

In death, she has given life: An organ donor

Dr. Tan Bee Hooi, 37, an anaesthetist with the Penang Hospital in Malaysia, died in Paris on Wednesday following complications from surgery related to arteriovenous malformation (AVM) in her brain.

She had undergone treatment by a world-renowned interventional neuro-radiologist. The complicated procedure of the embolization of the AVM on March 11 went well but Dr. Tan's condition took a turn for the worse and she died on Wednesday due to complications from the follow-up surgeries.

Dr. Tan's father, Datuk Tan Gin Soon, believed that his daughter would have wanted him to donate her organs, given her "deep and abiding interest" to serve fellow human beings.

Her family has donated her organs, including her corneas, heart, kidneys and liver, to patients in France and other countries of Europe.

"She was truly a remarkable woman. Even in death, she has given life," said the Malaysian Ambassador to France, Datuk S. Thanarajasingam.

Advice: Write and sign a note card stating your wish to have your organs donated, have it witnessed, and keep it in your wallet.

Read an organ recipient’s story.

Thanks to the New Straits Times for the source article from today's NST Online.

No better way to pay back the universe: A cancer survivor's story

During Thanksgiving weekend in 2005, Henri Engle's throat swelled up. Two weeks later, while watching a movie, he began coughing up blood. He finished the movie before going to the Emergency Room at Massachusetts General Hospital. They took him into surgery immediately, and he awoke in the Oncology unit, diagnosed with a very rare cancer – synovial sarcoma of the throat.

The tall 24-year-old went through four doses of chemotherapy over five months, and six weeks of radiation treatment, twice a day for five days a week. He had to be fed through a gastric feeding tube, and he lost 85 pounds.

Now, he's cancer-free, and at 175 pounds he's in the best shape of his life. How? He attributes his strength to workouts with cast-iron kettlebells – which look like cannonballs, each with a handle, and weigh from 10 to 88 pounds.

Henri encountered personal trainer Anthony DiIuglio, the owner of the first American kettlebell gym, in East Providence, Rhode Island, and began working out. He progressed rapidly under Anthony's guidance. Anthony is himself a cancer survivor. He works with patients while they are undergoing radiation, to offset the scarring and stiffening ("fibrosis") of muscle tissue that radiation can cause.

Henri’s progress prompted him to ask Anthony for a license to open his own Punch Kettlebell Gym. Henri opened the gym this week in Newton Centre, Massachusetts. With the gym, he says, "I get to help people doing something I enjoy – there's no better way to pay back the universe than that. Not everyone gets that kind of direction in life."

Advice: Take heart; people are amazingly resilient. Some find that cancer has led them to find their calling.

Read another inspirational cancer survivor story.

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