He got it for free: A decision by Mariano Rivera on elective shoulder surgery

Mariano Rivera stepped out of the visitors' clubhouse in Boston's Fenway Park on Friday to get a soft serve ice cream cone. It cost $4.25, but he got it for free. At 38, after a long career, he is well known, and being the greatest closing pitcher in baseball history has its perks.

He is weighing the merits of shoulder surgery for inflammation caused by a calcification in his right shoulder. It causes him periodic irritation and pain, intensifying when he pitches frequently, but has not prevented him from having 38 saves in 39 chances this season, with 76 strikeouts and only six walks.

He had an MRI (magnetic resonance imaging) test, and saw two doctors this week, who have given him the options of cortisone injections to dull the inflammation, or surgery. The surgical procedure would be a minor one, requiring only a few weeks of rehabilitation.

He is weighing his dislike of needles against the low risks of surgery, and is leaning toward surgery.

Advice to athletes considering surgery: Keep in mind that the team physician and other employees of the team have the team’s best interests at heart, not necessarily yours.

Read another story on a baseball pitcher.

Thanks to Tyler Kepner for the source story in today's New York Times.

Birth is sacred and a joy: Home birth

"For a normal, healthy pregnancy, the hospital environment is overkill," says Jessica Reid, 27, a stay-at-home mother in Pasco, Washington.

Jessica had her first baby in a hospital, but plans to have her second – due in late August – at home. "Interventions that neither the mother nor father wish to occur are more likely when surrounded by people who view pregnancy as an illness or labor as inherently dangerous," she says. "I consider birth sacred and a joy, and I intend to birth my baby in a way that reflects that."

She used an experienced midwife for her prenatal care and delivery. The midwife was equipped with a fetal heart monitor, oxygen tank, blood pressure cuff, etc. Jessica soaked in a small birthing pool to relieve her labor pains.

Midwives assist most planned home births. Midwives generally accept only low-risk pregnant women, excluding those with diabetes, high blood pressure, or multiple births. Even so, they travel with basic emergency equipment, including resuscitation gear, oxygen, and medication to stop hemorrhaging. They emphasize that they practice prevention, and know how and when to get a woman to the hospital.

Advice to pregnant women: Think carefully about how you would like to deliver your baby, and make sure your medical provider knows and will heed your preferences for pain relief, C-sections and other options.

Read a very different midwife's story.

Thanks to Ada Calhoun for the source story in the August 18 issue of Time magazine.

They declined to pay for chemotherapy: Overturning an insurer's denial

David Foglesong, a history professor from Montgomery Township, N.J., began searching medical databases soon after Horizon Blue Cross Blue Shield of New Jersey declined to pay for a targeted chemotherapy treatment for his wife, RoseMary. During one library visit, he found a new study that showed the treatment had helped patients with conditions similar to his wife's disease, advanced sarcoma that had spread to her liver.

The couple, advised by Patient Advocate Foundation, a nonprofit group, solicited new letters from RoseMary's doctors, and her primary oncologist argued on her behalf in a conference call with the insurance company's reviewers in June. The company reversed its earlier decision, and RoseMary, 49, got the treatment in July.

Horizon officials say the procedure was initially denied because it was deemed experimental and not the standard for Ms. Foglesong's condition. The company said a review committee reversed that decision because of the "whole totality of her case," including the medical literature.

Advice for denied insurance beneficiaries: Look into it like David did, and consider filing an appeal with your insurer.

Read another insurer denial story.

Thanks to Anna Wilde Mathews for the source story in the Wall St. Journal's Personal Finance section today.

Abruptly changing the subject: Empathy from doctors

The man diagnosed with lung cancer sounded dispirited when talking about what cigarettes had done to him.

"I was always told I had a good strong heart and lungs. But the lungs couldn't withstand all [those] cigarettes…asbestos and pollution and secondhand smoke and all these other things, I guess," he said.

"Do you have glaucoma?" the doctor responded, abruptly changing the subject.

In her recent study in the Archives of Internal Medicine, Dr. Diane Morse recorded physicians’' appointments, and noted 384 times when patients mentioned concerns or emotions about mortality. Doctors responded with empathy only 10% of the time.

Advice: Find a doctor with both empathy and excellent technical skills.

Read a story on compassion.

Thanks to Will Dunham for the source article in the Boston Globe of Sept. 23.

So he'd take a trip to New Zealand: Patient advocate Jonathan Wadleigh

Born with hemophilia, Jonathan Wadleigh spent part of his childhood in a wheelchair or on crutches as internal bleeding turned his young joints arthritic. He took his first steps towards years of activism by hobbling door to door on crutches to register voters.

As an adult, in 1983, Jonathan learned that some blood products he had used to help his blood clot normally were contaminated, infecting him with HIV and hepatitis C. He focused his activism on those who hemophilia whose lives would be shortened by AIDS. He was the lead plaintiff in a class action lawsuit that produced a $670 million settlement from four drug companies that made the blood products. In the late 1980s, he helped found, and served as first president of, the Committee of Ten Thousand, an advocacy group mainly for the estimated 10,000 people with hemophilia who were infected with HIV by the blood products used to treat them.

Jonathan died of liver cancer on June 4 in Boston. A brother, Robin, died of AIDS in 1985 after being infected through blood products.

Once he said to his half-sister Anne, "You know, if I didn't take my medicine, I'd be dead in three days." But, said Anne, "He lived that way. There were times when he was told he might die soon, so he'd take a trip to New Zealand. That was his response to imminent death."

He also became a mentor to others who faced death through infection by blood products. "He was a great person to empower people to find their own path. Jonathan would say, 'These are your goals and these are your skills. You have to be socially responsible, but follow your dreams,'" his wife said.

Advice: Live as actively as Jonathan.

Read another story on a blood transfusion.

Thanks to Bryan Marquard for the source article in the Boston Globe of June 14.

A once-in-a-lifetime experience: Deeper life after cancer treatment for James Levine

James Levine, the Metropolitan Opera and Boston Symphony Orchestra maestro, said on Friday that his recent brush with cancer brought a glimpse of mortality that will inevitably color his work.

"It's a once-in-a-lifetime experience to have your doctor say, 'You have cancer,'" he said. A kidney with a malignant growth was removed on July 15. "It makes one feel…snatched from the jaws. "

He is the music director of both the Met and the Boston Symphony and one of the eminent opera conductors of the age.

He said his surgery brought another layer of meaning to the Verdi Requiem that he conducted at the Met on Thursday. "It had a dimension of significance, richness – the piece and the whole experience – which was clearly related to this one-of-a-kind experience I just had. It was without a doubt a more significant and deep-feeling experience to prepare it now than it was before."

But while "this business about mortality" made everything feel more significant, he did not feel more driven to accomplish new tasks.

"I realize that if I had three lifetimes I could never do everything. Therefore, I feel very grateful for what I've been able to do."

James Levine's Advice: "I must make sure that I bring to bear whatever fresh insights and richness come from that experience."

Read another story on how a famous person has been living well after a cancer diagnosis.

Thanks to Daniel Wakin for the source story in yesterday's New York Times.

She thought he was just throwing a tantrum: An IV drug error

When six-year-old Chance Pendleton came out of surgery for a wandering eye, it was obvious that something was not right. "He was crying hysterically, vomiting and kept saying, 'I wish I was dead,'" his mother said.

The boy had been through surgery before and had never reacted this way: "The nurse was quite peeved and wanted me to calm him before he disturbed anyone," his mother said, adding that Chase was denied more pain and anti-nausea medication. "She thought he was just throwing a tantrum."

After about 20 minutes, another nurse walked by, and Chance's mother beckoned her for help. The nurse checked the intravenous line in Chance's ankle and saw that it wasn't inserted correctly. He wasn't receiving any medication. She immediately fixed it, bringing relief to Chance in a matter of seconds.

Chance's mother said she had not been aggressive enough. "I wish I had been more confrontational sooner," she said. "That was the worst 20 minutes of my life."

Advice: Parents need to be the eyes, ears and advocates for their children. Dr. Steve Selbst, author of a study of malpractice suits, says, "You know your child, and if you feel something's wrong, go up the chain of command."


Read another story of a mother who saved her son.

Thanks to Laurie Tarkan for the source article in yesterday's New York Times.

Despite the antibiotics: Strep throat and a missed diagnosis

"I – can't - breathe," the boy gasped. There was panic in his voice and face. He moved restlessly in his hospital bed, tugging at the clear plastic mask that covered his mouth and nose. It was unusual for a 17-year old boy to be in the pediatric intensive care unit.

Earlier that morning, the boy had a fever, but otherwise looked well. Now his condition had deteriorated: he was breathing at three times the normal rate, he had bone-wrenching chills, and was spiking fevers up to 105 degrees. There was very little oxygen in his blood.

Six days earlier, the boy had awakened with a fever and sore throat. His family doctor had diagnosed strep throat the next day, and had begun azythromycin, an antibiotic that is usually effective against strep. The diagnosis was obvious, and no strep test was done.

Despite the antibiotics, the boy continued to spike fevers up to 102 degrees, and pain and swelling had migrated from his throat to the right side of his neck. The boy's parents took him to the hospital because something scared them; his responses were slow and strangely deliberate.

During three days in the hospital, doctors and other clinicians performed a variety of consultations and diagnostic tests. A blood culture developed a strange bacteria – Fusobacterium necrophorum – which enabled the diagnosis of Lemierre's disease, which is treatable through antibiotics. In the meantime, however, the boy’s condition had worsened, and he had to be put on a ventilator to get him enough oxygen.

His lungs never recovered, and he died in the intensive care unit three weeks later.

The family doctor, heartbroken over his missed diagnosis, now says that every patient in his practice with suspected strep will have a throat culture.

Advice to parents with children who may have strep: Ask to have a strep test or throat culture to confirm the diagnosis.


Thanks to Dr. Lisa Sanders for the source story in today's New York Times Magazine.

I was sitting all snugly and warm: A nurse's heart attack

I had a heart attack at about 10:30 PM with NO prior exertion; NO prior emotional trauma that one would suspect
 might've
 brought it 
on. I was sitting all snugly & warm on a cold evening,
 with my purring
 cat in my lap, reading an interesting story my friend had sent me, and actually thinking, 'A-A-h, this is the life, all
 cozy and warm in my
 soft, cushy Lazy Boy with my feet propped up.'


A moment later, I felt that awful sensation of indigestion,
 when you've
 been in 
 a hurry and grabbed a bite of sandwich and washed it down
 with a dash of
 water, 
 and that hurried bite seems to feel like you've
 swallowed a golf ball
 going down 
 the esophagus in slow motion and it is most uncomfortable.
 You realize
 you shouldn't have gulped it down so fast and needed to
 chew it more
 thoroughly and this time drink a glass of water to hasten its progress
 down to the
 stomach. 
 This was my initial sensation---the only trouble was that I
 hadn't taken
 a bite 
 of anything since about 5:00 p.m. 
After it 
seemed to subside, the next sensation was like little
 squeezing motions
 that 
 seemed to be racing up my SPINE (hind-sight, it was
 probably my aorta
 spasming), 
 gaining speed as they continued racing up and under my
 sternum (breast
 bone, 
 where one presses rhythmically when administering CPR). 
 This fascinating process continued on into my throat and 
 branched out into both jaws. "AHA!! NOW I stopped
 puzzling about what was happening -- we all have read and/or heard
 about pain in 
 the jaws being one of the signals of an MI happening, haven't 
we?" I said aloud to myself and the cat, Dear God, I think
 I'm having a 
 heart attack!


I lowered the footrest dumping 
 the cat from my lap, started to take a step and fell on the
 floor
 instead. I thought to myself, If this is a heart attack, I shouldn't be 
walking into the next room where the phone is or anywhere
 else ... but,
 on the 
 other 
 hand, if I don't, nobody will know that I need help,
 and 
 if I wait any longer I may not be able to get up in moment.
 I pulled myself up with the arms of the chair, walked
 slowly 
 into the next room and dialed the paramedics ... I told her
 I thought I
 was having a heart attack due to the pressure building under
 the sternum and
 radiating into my jaws. I didn't feel hysterical or
 afraid, just stating
 the
 facts. She said she was sending the paramedics over
 immediately, asked
 if the front door was near to me, and if so, to unbolt the
 door and then
 lie down on the floor where they could see me when they 
 came 
 in. I unlocked the door and then laid down on 
 the floor as instructed and lost consciousness, as I
 don't remember the
 medics 
 coming in, their examination, lifting me onto a gurney or
 getting me
 into their 
ambulance, or hearing the call they made to St. Jude ER on
 the way, but
 I did 
 briefly awaken when we arrived and saw that the
 cardiologist was already
 there in his surgical blues and cap, helping the medics pull my
 stretcher out of the 
 ambulance. He was bending over me asking questions
 (probably something
 like 
 "Have you taken any medications?") but I couldn't make my mind interpret
 what he 
 was saying, or form an answer, and nodded off again, not
 waking up until
 the 
 cardiologist and partner had already threaded the teeny
 angiogram
 balloon up my 
 femoral artery into the aorta and into my heart where they
 installed 2
 side by 
side stents to hold open my right coronary artery. 
I know it sounds like all my thinking and actions at
 home must have taken at least 20-30 minutes before calling the paramedics,
 but actually
 it took perhaps 4-5 minutes before the call, and both the fire
 station and St.
 Jude are 
 only minutes away from my home, and my cardiologist was
 already to go to
 the OR 
 in his scrubs and get going on restarting my heart (which
 had stopped
 somewhere 
between my arrival and the procedure) and installing the
 stents. 
 Why have I written all of this to you with so much detail? Because I want all of you who are so important in
 my life to
 know 
 what I learned first hand.

A nurse’s advice:
1. Be aware
 that something very different is happening in your body not
 the usual
 men's 
 symptoms but inexplicable things happening (until my
 sternum and jaws
 got into 
 the act). It is said that many more women than men die of
 their first
 (and 
 last) MI because they didn't know they were having one
 and commonly
 mistake it 
as indigestion, take some Maalox or other anti-heartburn
 preparation and
 go to 
 bed, hoping they'll feel better in the morning when
 they wake up ...
 which 
 doesn't happen. My female friends, your symptoms might
 not be exactly
 like 
 mine, so I advise you to call the paramedics if ANYTHING is
 unpleasantly
 
 happening that you've not felt before. It is better to
 have a "false 
 alarm" visitation than to risk your life guessing what
 it might be!

2. Note that I said "Call the paramedics." And if you can, take an aspirin. Ladies, TIME IS OF THE ESSENCE!
 Do NOT try to drive yourself to the ER - you are a hazard to others on
 the road. Do NOT have your panicked husband who will be speeding and
 looking
 anxiously at what's happening with you instead of the road. Do NOT
 call your doctor
 -- 
 he doesn't know where you live and if it's at night
 you won't reach him
 anyway, 
 and if it's daytime, his assistants (or answering
 service) will tell you
 to call the paramedics. He doesn't carry the equipment in his
 car that you need
 to be 
 saved! The paramedics do, principally OXYGEN that you need
 ASAP. Your
 doctor will be notified later.

3. Don't 
assume it couldn't be a heart attack because you have a
 normal
 cholesterol 
 count. Research has discovered that a cholesterol elevated
 reading is rarely the cause of an MI (unless it's unbelievably
 high and/or
 accompanied by high blood pressure). MIs are usually caused
 by long-term
 stress 
 and inflammation in the body, which dumps all sorts of
 deadly hormones
 into your 
 system to sludge things up in there. Pain in the jaw can 
wake you from a sound sleep. Let's be careful and be aware. The more we
 know, the better
 chance we could survive.

Read another story of a rescue by emergency medical technicians.

Thanks to Cheryl Long for the source story by an anonymous nurse.

On a specially modified windsurfer: Recovery from Eastern equine encephalitis

Six summers ago, Judy Ashton, a lawyer in her fifties, got Eastern equine encephalitis, a rare and debilitating viral disease spread by infected mosquitoes. Her left side was paralyzed, and her speech was severely impaired. Once an avid golfer and tennis player, she could barely walk. She feared that her life as an athlete was over.

Two years later, she took a sail on the Charles River, while strapped to a chair mounted on a specially modified windsurfer. With practice, she eventually graduated to a tandem board with a co-pilot. Since the time her co-pilot splashed into the water, claiming Judy had pushed him, Judy has been on her own, and now wind-surfs at least once a week in the summer. Nothing beats the rush of skimming along the Charles on a sunny July morning. "The rule is, if you fall off the board you have to get back up really fast, or else they'll come and pick you up," she laughs.

She had been very lucky to meet Ross Lilley, a minister and the founder of AccesSportAmerica and a pioneer in designing adaptive equipment and recreational programs for the disabled. Ross has been quite inspirational too: In 1984 he had begun adapting windsurfers and other water sports equipment for athletes like his son Joshua, who has cerebral palsy. In 1995 Ross launched AccesSportAmerica, which runs year-round sports and fitness programs that serve more than 1,500 athletes a year.

For the last eight years, AccesSportAmerica has teamed with therapists at Spaulding Rehabilitation Hospital in Boston to offer windsurfing, kayaking, rowing, and outrigger canoe sessions on the Charles. Their goal is to engage athletes like Judy (who are not considered "patients" or "clients") in activities that are both physically challenging and spiritually nourishing.

Advice to athletes: After a disabling injury, look for other sports to enjoy.

Read another story of an athlete’s recovery.

Thanks to Joseph Kahn for the source article in the Boston Globe of July 22.

I felt finally that I was alive: Recovery from meth addiction

"Everybody that I knew from the mid-1980s started using meth and I got into using," says Kris Salisbury, now 43. "Somebody brought some meth from California and it just started from there."

She used methamphetamine for 12 years, and her three children "went through my addiction with me." On Dec. 3, 1998, after they heard she was manufacturing meth, members of a drug task force raided her home, removed her children, and placed them with her parents.

A worker at the Department of Human Services asked if she needed help. "I was tired of living that way and I was devastated, and I was living with a man who was really, really abusive. So I went into treatment," she said.

The first Moms Off Meth group in Ottumwa, Iowa started in July 1999, and Kris knew she wanted to be part of the group, made up initially of four members and two facilitators.

She achieved sobriety on Aug. 16, 1999, and participated in the group for several years. "The encouragement of other women saying ‘You can do this’ and 'I believe in you,' and when you’re using you feel like nobody believes in you and everybody treats you like you're worthless and useless, and you get into these groups and other women are saying, 'Way to go!', your life changes and you start believing," she said. She received a college degree and certification as an addiction counselor.

"I knew when I got sober that I wanted to help other people because I felt finally like I was alive and I had a purpose in life," she said.

Kris now facilitates Moms Off Meth groups in the Iowa communities of Ottumwa and Fairfield, and trains other women as group facilitators. She also works for First Resources Corp. as an in-home counselor, helping people in rural areas obtain treatment and support services.

Advice: Help others overcome the problem you overcame, like Kris.

Thanks to Brion McAlarney for the source article in the May/June issue of Addiction Professional.

I've done a lot: A prostate cancer patient's choice

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment—incontinence and impotence---he chose what oncologists call "watchful waiting." For 12 years, Forbes was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Forbes said he knew could not cure him but might slow the cancer's progress and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.

"I took that kind of hard," said Forbes, an associate professor of media studies at Queens College. "I always thought I would live to 90, but I guess now I won't."

He just started radiation to the brain, perhaps with infusions of an experimental drug afterward. "I'll try chemo for six months, but if it gets too uncomfortable and inconvenient….,” he said, trailing off. "Having lived 80 years, I've done a lot. I don't have a reason to think I've been badly treated by life."

Forbes seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Forbes say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

Advice: Make your own choice. Live life on your own terms.

Read another story about a cancer patient’s attitudes toward the illness.

Thanks to Jane Brody for the source article in the Aug. 18 issue of the New York Times.

I am determined to have a future: Seeking a kidney

My name is Beth Abramowitz and I am 33 years old. I am married to a loving husband and together we have a wonderful and energetic four-year old son named Adam and a newborn daughter named Olivia. We live in Scarsdale, New York.

After the birth of my son Adam we learned that I had kidney disease. The disease has progressed over the years and we are now at a stage where it has become necessary to begin to plan for a kidney transplant. Our hope is that this transplant will enable me to continue me to live a normal and healthy life and enjoy many more happy years with my family. I have so much to live for and I am determined to have a future with my husband, son and newborn daughter.

Please contact me [at this web site] if you or someone you know is interested in considering the donation of a kidney. A potential donor needs to be under the age of 60 and have Type O (O+ or O) blood. I would be extremely grateful to anyone who might consider helping us.

Thank you.

Beth


Advice to those needing an organ replacement: Consider publicizing what you need on your own web site, like Beth.

Read a kidney exchange story.

Thrilled to be a pitcher and not a patient: Carl Pavano's shoulder misdiagnosis

The scar still looks fresh, 15 months later, on the inside of Carl Pavano's right elbow. Usually, after Tommy John surgery, it settles into a flesh-colored zipper, visible but not so obvious. Carl is actually progressing quite well.

As he comes to the end of his four-year, $40 million contract, Carl is thrilled to be a pitcher and not a patient. But he also has wounds from a bitter comeback trail that are hard for him to forget.

Carl said he was bruised by the belief among fans, reporters and some teammates that he was not dedicated to his craft. When he reflects on four lost seasons, he said he thought it could have been different if the Yankees' team doctor had recommended reconstructive elbow surgery sooner.

Carl shares some of the blame. He said he should have reported his back problems early in the 2005 season, when he made 17 starts through the end of June. Those issues brought about everything else, he says.

"I wish I had been smart enough to just get it right," Carl said. "Say something, make sure something was taken care of, instead of just keeping pitching and thinking it was going to get better."

A daily massage at his apartment helped for a while, Carl said, but pitching with back pain affected his arm. He went on the disabled list that July, and the Yankees announced that he had right shoulder tendonitis.

He made two rehabilitation starts after a month of rest and was re-evaluated by the team physician and a doctor whom Carl had known and trusted for years. The new diagnosis was rotator cuff tendonitis and associated pain in the humerus.

"When they reported I had rotator cuff tendonitis, I actually had a stress fracture in my humerus bone," Carl said. "It wasn't rotator cuff tendonitis. It was just misdiagnosed."

By May, Carl was back on a minor league pitching mound, but he left a start for Class AA Trenton with elbow discomfort. This, Carl said, was a pivotal point.

Six years earlier, when Carl pitched for Montreal, a doctor had removed bone chips from his elbow. He did it again in May 2006, removing a chip the size of a marble. (Carl kept is as a souvenir, he said, until it turned to mold and dust.) The procedure was a temporary fix. It helped for a while, but when Carl broke his ribs in a car accident that August, he aggravated the elbow by trying to keep pitching without telling the Yankees about the injury. In hindsight, Carl said, he could have had Tommy John surgery that summer, but the Yankees did not recommend it.

"I think I could have, but we'll never know," Carl said. The doctor "was told not to. He was told to take the bone chips out and rehab it."

Two starts into the 2007 season, the elbow pain returned, and Carl insisted on major surgery as the only way to heal everything. It took four doctors to find one who agreed definitively. That was the Mets team doctor.

"They had to go through all that red tape; that's why I had to go get all these opinions," Carl said. "It was crazy. And I had to walk around with my heart in my throat: 'Are you serious? You're messing with my career here.' You think I wanted to have Tommy John surgery? But I knew I needed it and I knew I could come back from it. That's why I was all for it."

The Mets team physician told Carl he had done everything he could to come back from the 2006 operation. His only choice was Tommy John surgery, in which a tendon from Carl's knee was used to replace an elbow ligament.

It took place June 5, 2007, nearly two months after he had last pitched a game. Carl said he wished he had the operation sooner.

"I would have been back seven weeks earlier this year," Carl said. "That would have been a considerable amount of time to help the team."

Advice: If you don't agree with a doctor's diagnosis, ask what else it could be. If the answer and the recommended treatment are still unsatisfactory, consider getting another doctor's opinion.

Read another Yankee pitcher's misdiagnosis story.

Thanks to Tyler Kepner for the source article in yesterday's New York Times.

I have been through this: Ongoing treatment for metastatic breast cancer

Laurie's story:

I am 40 years old, a mother to two boys, a spouse, friend, sister, daughter and writer. I am also living with metastatic breast cancer. I was first diagnosed with breast cancer in January 2006 and with liver mets in November 2006. I have responded very well to treatment (four clean scans and counting) and plan on sticking around (and living well) for a long time.

As my oncologist recently put it, "sixteen years ago, women with liver mets only had a matter of months to live," yet here I am, miraculously in remission and continuing to defy the odds. The same oncologist has declared himself to be "amazingly optimistic," going so far as to call my results "spectacular."

So many women with metastatic breast cancer are now defying the odds that the illness is starting to be viewed more as a chronic illness than the death sentence it once was. We are living longer and living well. And that is something I plan on continuing to do for a long time.

The thing about being in ongoing treatment for metastatic breast cancer is that one gains a fair amount of experience in navigating the system and acquires some pretty strong opinions as to how things should be done.

At least that's true for me.

For example, whenever I go for chemotherapy treatments (I have lost count of how many I have had but it is probably closing in on fifty), I know that I need to pay attention to a few things:
When I check in, I ask if my next date (for four weeks later) has been booked. There was lots of confusion around this when my schedule changed and I would have to go and see the woman who does the booking to straighten things out (luckily, she is the kind of hospital staffer who believes the patients know lots about their own care, so this was usually a painless conversation) but my schedule has been stable enough of late that I haven't had to do anything.

I always book my bloodwork, which is done through my Portacath, for a couple of hours before chemo. I do this as soon as I am advised of my next chemo appointment.

When I have bloodwork done, I ask them to leave me hooked up (leave the needle and tubing in) so that I don't have to be poked again in a couple of hours.

When I drop off the bloodwork, I remind the lab that I have chemo in a couple of hours.

When I am called into the chemotherapy room, I always insist on a bed (I am given Demerol, to mitigate my reactions to Herceptin and it hits me pretty hard). If no bed is available, I ask the oncology nurse to get me started and move me when a bed becomes available. If the nurse isn't familiar with my treatment, I explain that I will take Demerol, why this is the case and what it does to me. I also tell her (all but one of the oncology nurses are women) that she will need to go and get the Demerol as the pharmacy will not bring it with the chemo drugs.

Treatment starts with a steroid to help take the edge off nausea. It also makes me incredibly itchy in my nether regions (I am told that it can give men erections. How embarrassing!). I ask that it be administered very slowly.

If the nurse does not suggest it, I ask that the Demerol be administered via IV drip and not with a syringe. It hits me less hard if it is administered over a longer period of time.

When my drugs come, I check to make sure that I am being given Gravol (Dramamine in the US) and not Benadryl. The generic names are very similar and they are often confused.
Usually, things go smoothly. Sometimes they are a complete mess. Just last week, I had to call my oncologist's office because they had scheduled me for an appointment with him for the day after chemo. He always sees me before chemo and I can't get treated if I haven't seen him.
When I called to change the appointment, the admin person I talked to was a bit unsure as to how to proceed. She was having a hard time believing that the info in her computer could be wrong. "You need to trust me," I said. "I am on the long term plan and I have been through this many, many times."

She made the change.

Most of the hospital staff are very nice and incredibly competent. The ones I respect the most ask me how we should go about doing things (my protocol is unusual and I know the routine better than anyone). The ones I like the best are the ones who remember me and start setting things up the way I need them to be without my having to say anything. And it really helps if they ask about my kids.

I don't even mind if they tease me about my snoring. The Demerol really does knock me out.

Thanks to Laurie Kingston for the source story in the Breast Cancer Network site.

More than five miles at a time: Recovering from post-stroke depression

Now more than a year and a half after her stroke, 38-year-old Dira Cannistraro continues to recover from her life-altering experience.

"A few months after my stroke, I began struggling with some of the emotional side effects,""says Dira. "The emotional reaction astonished me considering how well I recovered. Since then, I have learned that post-stroke depression is quite common due to brain trauma and biochemical changes. I would like to make people who have had a stroke and their families aware that they should be on the lookout for symptoms of depression. I also want people to know it is a very common reaction to stroke. This has been an unexpected complication but I've found various ways to help alleviate the symptoms."

Emotional and physical health has become a priority for Dira. Through therapy and exercise, she is feeling more like herself again. She started running just a few months after her stroke and completed the Falmouth Road Race in August 2007, just eight months after the stroke.

"I had never run more than five miles at a time before in my life", says Dira. "Running became a way for me to regulate my emotions. I decided after Falmouth that I wanted to run a half marathon and I completed the Hyannis Half Marathon in February 2008."

Though the physical and emotional recovery process has been a long road, Dira continues to be thankful for all the good that has come from that situation. "There has definitely been an upside to the stroke. The outpouring of love and help from my family, friends, neighbors and my community has been so comforting and uplifting. People made meals, helped with the boys, even offered to walk my dog...it was really touching. I was also lucky to receive great care at Newton-Wellesley. The staff all were wonderful - I have even gone back to visit and thank them for their support and kindness during a difficult and frightening time of my life."

Advice: Exercise can help reduce post-stroke depression.

The anonymous source article appeared in the most recent Newton-Wellesley Hospital newsletter, Family HealthSource.

I knew I had to live: A pregnant breast cancer survivor

Patty Murray, an attorney in Buffalo, was 35, very healthy and pregnant with her third child. Nearing the 17th week of her pregnancy, she noticed a lump under her arm.

An ultrasound exam revealed that she had aggressive breast cancer, which had spread to her lymph nodes. At that time, in 1995, little was known about cancer treatment of pregnant women, but her oncologist told her the chemo would have no effect on her fetus; if anything, the baby would be born without hair.

Surprisingly, according to a Norwegian study of 45,000 women diagnosed with cancer, pregnancy does not affect survival rates. Some women say that being pregnant increases their will to survive. "The baby inside me created a necessity for living," she said. "Whenever I felt him moving around, I knew that I had to live."

Ten long seconds after her baby boy was born, she heard him cry. "It was the most wonderful sound I ever heard," she said. The doctors brought him over, and unlike her first two children at birth, he had a full head of hair.

Twelve years later, in 1997 Patty founded Hope for Two…the Pregnant with Cancer Network. Its mission is to connect cancer patients.

Advice: Live like Patty, who created an organization to help people overcome what she overcame.

Thanks to Pamela Paul for the source article in the New York Times Magazine of August 31.

She signaled by blinking her eyes and nodding: An endurance athlete at the end of life

Barbara Warren, a champion endurance athlete in the over-60 age group, died in Santa Barbara, California on Tuesday, three days after crashing during the cycling portion of the Santa Barbara Triathlon.

She had broken her neck in the fall and was paralyzed from the neck down, breathing with a ventilator, when she signaled, by blinking her eyes and nodding, that she wanted the ventilator turned off.

"She wanted to leave," said her sister. "No athlete would like to have a life with only their eyes talking."

Barbara had competed 13 times in the Ironman Triathlon World Championship in Hawaii, winning it at the age of 60. The triathlon consists of a 2.4 mile ocean swim, a 112-mile bike ride, and a 26.2 mile marathon.

Advice to family members with gravely ill relatives: Honor the wishes of family members about the end of life.

Read another end of life story.

Thanks to Bruce Weber for the source story in today's New York Times.

Each of us has had a serious error: Testimony on patient councils for hospitals

Here is the testimony to the Massachusetts Executive Office of Health and Human Services that I delivered this afternoon on the health care law that Gov. Deval Patrick signed on August 15:

Dr. Bigby, Mr. Wilkinson, and Commissioners,

It's very late in the day, and I appreciate your patience in hearing our testimony on Chapter 305.

I'm a member of Health Care for All's Consumer Council. Each of us has had a serious error in our family.

We're very happy with the quality sections of the newly signed law, Chapter 305, and urge you to request a lot of money in your departmental budget for the next fiscal year for monitoring hospitals' reporting of serious events and hospital infections, and encouraging rapid response teams in hospitals.

In the interest of time, I'll focus on hospital patient and family advisory councils. Elsewhere in the country, these councils have greatly raised patients' satisfaction levels. And, since patients are trained on how to care for themselves, fewer need rehospitalization, and fewer come back to the E.R., after leaving the hospital. So there can be big cost savings, too, IF people receive solid training on how to be effective council members. At a few thousand dollars to train a team at each of the 70 hospitals in the state, that comes to a few hundred thousand dollars. That money would be well spent.

Thanks for your consideration.

Advice: Look for opportunities to create and influence laws for patient partnership.

Read another story about testimony on Massachusetts legislation.

Leaving only his heart untouched: An Iraq vet's fight with the Veterans Administration

Sgt. Tony Wood, 41, now based in Schofield Barracks in Hawaii, keeps a large color-coded board by the door with reminders about his appointments, his chores and his belongings, all part of the Brain Injury Recovery Kit he received from a nonprofit group called the 10 in 10 Project. His wife calls him all day with reminders, and after losing his keys countless times, he attaches them to his pants. Notebooks fill his pockets.

In his view, the military is still failing to grasp the depths of his injury, and those of other soldiers like him.

In July 2005, Sergeant Wood's Humvee hit a roadside bomb cemented into the curb. The blast set off a chain reaction, triggering two American fragmentation grenades inside the Humvee along with an antitank weapon and countless rounds of ammunition. The two other soldiers riding with him died in the blast. The explosion tore through Tony's arm and abdomen and then ricocheted inside his body, leaving only his heart untouched. His liver had a fist-sized hole, he lost his spleen and part of his stomach, and he sustained damage to his lungs and diaphragm.

His first memory afterward came a month later at Walter Reed Army Medical Center, when he saw his wife and asked her, "Why are you in Iraq?"

Doctors patched up most of his physical wounds over five months. But his wife noticed that he was not himself mentally. He did not remember someone who had just walked out of the room, and forgot questions he had just been asked. He struggled to read one chapter of a book.

At Walter Reed in December 2005, doctors gave him a brain injury test. But it was inconclusive. "They tried to say I had A.D.D., I needed a good night's sleep, you name it," he said.

As he recovered in the Warrior Transition Unit of Tripler Army Medical Center in Hawaii, he tried to decide whether to stay in the military by switching to less taxing jobs, or to leave, collect his benefits and find a civilian job. But his previous jobs – professional cowboy, scuba instructor, construction worker – were out of the question.

He fears that the best job he can get now is to be a greeter at WalMart. With four foster children, two biological children and his wife, he applied to stay in the military. The Army Medical Board deemed him unfit for active duty and sent him to the Physical Evaluation Board for a disability rating that would determine his benefits package once he was discharged from the Army.

When he saw his rating in March, he was floored. Despite his extensive wounds – brain injury, constant pain, failing hips, headaches, noise sensitivity, no spleen, lung damage, liver damage, panic attacks and chronic esophagitis – he received only a 50% disability rating. His brain injury made up 10% of the total. The Board said "his stated difficulties are more consistent" with post-traumatic stress disorder.

"That disability rating was completely wrong," said Mr. Baker of Disabled American Veterans.

"You are still treated like you are trying to beat the government out of money," Tony said. "It's not like I fell off a barstool."

Advice to seriously wounded warriors: You may need to keep fighting after you come home. If so, get a champion, and tell your story long and loud, to win the war at home.

Thanks to Lizette Alvarez for the source story in today's New York Times.

The team physician provided a third opinion: Elective surgery

Boston Red Sox pitcher Curt Schilling has a record of 11 wins and 2 losses in the post-season, the best record of any pitcher with at least ten win/loss decisions. Now at age 41, he has not pitched this season because of a shoulder injury.

After his problem was diagnosed as a tendon injury, the team physician recommended rehabilitation. Curt has been receiving rehabilitation since spring training. Since then, he got a second opinion from another doctor, who recommended surgery. The Mets' team physician provided a third opinion, agreeing with the team physician.

Curt has chosen surgery. It is likely to take him about six months to recover fully.


Advice to people considering surgery: Get additional opinions from a variety of doctors if you're not sure.

Read another second opinion story.

Thanks to Jack Curry for the source story in the New York Times of June 21.

What do I have to lose?: Experimental stem cell therapy

I have been tossing and turning all night wondering where I get my strength, but I dig deep and find the answer, always, somewhere in my mind's abyss. A friend told me yesterday [now a year ago] that this will be my calling when I get better to breathe life back into people and talk about my experience with this illness and my journey to get better.

Drew Schemera, 35, wrote this in his blog, The Journey, a year ago before going from his Connecticut home to Beike Biotechnology in China for experimental stem cell therapy, six months after being diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease), and being given a life expectancy of 2.5 years.

He feels he did the right thing. There were "no clinical trials in the USA of any significance and no cure on the horizon," he wrote. "I made a choice to come to China and work my butt off in therapy and change my diet, and I'm slowing it [ALS] down. I probably will die from ALS, but I'll be damned if I'm not going down swinging! What do I have to lose?"

However, experts at the International Society for Stem Cell Research and elsewhere caution that professional standards for stem cell therapy have not yet been set. Dr. George Daley, the president of the Society, decries a "misconception by some patients that the cure is already here." He adds, "We need to be clear that the path to cures is a long and arduous one."

Advice: Make your own critical decisions, after careful thought.

Thanks to Neil Munshi for the source story in the Boston Globe of June 13.

It was wonderful to hear from him: A social networking site for a wounded Iraq veteran

Anna Carncross set up a CaringBridge web site for her uncle, Army Sgt. 1st Class Chris Blaxton. The 46-year-old soldier from Okemos, Mich., was severely injured by a roadside bomb in Iraq in October.

He was airlifted to Germany and wound up at Walter Reed Army Medical Center in Washington a few days later.

"We didn’t necessarily want anyone and everyone to be able to read about Chris but wanted all of his friends and family to be able to visit the site as often as they wanted," Anna said. "When Chris first got hurt, there were phone calls and e-mails going everywhere and it was impossible to make sure that everyone was updated." She said posting on the site saved time for the family so they could take care of Chris, his wife, Sabine, and their four children.

"It was also a way that everyone could reach out to Chris by leaving comments for him to read," Anna said. "It kept everyone up to date on Chris’ progress. Once he was able to, he started to update the page himself and it was wonderful to hear from him."

In June, a large homecoming was held for Chris at Okemos High School.

Advice for family members: Keep your friends and family posted by using a free web site like this one.

Read about a similar personal health networking website.

Thanks to Vince Little for the source story in the July 18 issue of Stars and Stripes.

Doing handstands on my walker: Elective amputation

Bonnie Denis was only three years old when a rare virus, transverse myelitis, attacked her central nervous system. It left her temporarily paralyzed below the waist. But she bounced back quickly, and by age five, "I was doing handstands on my walker." But as she grew, the muscles in her feet atrophied, and the bones grew crooked.

Now, when she walks, it feels "like there are a bunch of knives stabbing me," she says.

Even so, she has lived a very active life, dabbling in acrobatics. She keeps an active and quirky sense of humor. Now at 30, she has made a difficult and rare choice, after many operations and years in a wheelchair. The decision is as personal and unique as her custom-painted, raspberry-pink crutches.

She decided to find a doctor to amputate her excruciating right foot.

The decision follows a series of operations. While she was in high school, surgeons invented a series of procedures to reshape her feet. They broke bones and reset them. They implanted metal pins and took them out again. They augmented her own bones with bones from cadavers. Once horrified, she came to think it’s cool: "I'm part zombie," she says.

Bonnie knows the trade-offs; she knows surgery, and wheelchairs, and what it feels like to walk. She is making her own choice – maybe not the one you or I or her doctors would make for themselves – but none of us has walked a mile in her shoes. It's a well-considered decision, and it's hers.

Advice: Explore your choices thoroughly, and make your own choice.

Thanks to S.I. Rosenbaum for the source story in the June 16 issue of the Boston Globe.

Only in America: Pre-existing conditions and their consequences

The grotesque reality of my life has been constant constraint by the need for health insurance. With a congenital heart condition and a degenerative eye condition, I married my wife while in graduate school because I was no longer eligible for my parents' group pan, and at the time few graduate programs offered group health.

My career choices were dictated by the knowledge that I needed group health: the tenuous life of an academic in a tough job market seemed too risky, so I switched to law school.

I avoided private-sector legal jobs upon discovering that many firms do not provide group insurance but expect individual lawyers to find individual health plans, so I ended up working for the state.

Fortunately, things have worked out for me so far. It was not desperate need, such as you described [in "Health Benefits Inspire a Rush to the Altar, or Divorce Court"] but a sense of obligation and responsibility that drove me to make major life decisions based on health insurance needs (I do not have family who could foot the bill for open-heart surgery).

But only in America are people with pre-existing medical conditions forced to plan every aspect of their lives around the need for group health insurance. I have often toyed with the thought of emigrating to Canada or Britain simply to escape the constant, gnawing, lifelong fear of what might happen should my group health for any reason ever lapse.

-David Tallman, Atlanta

Advice: Insurance may be available through trade and professional associations.

Read a story about a person who has become uninsurable.

Thanks to David for his source letter to the editor of the New York Times, published on August 18.

The patient makes barking noises when excited: Google's Personal Health Record

I did a sneaky test of Google's new personal health record, since I was wondering whether they would keep my personal health record confidential.

I filled out a completely truthful profile for a member of our family: a 6-year-old male weighing 35 pounds, who has a whistling heart murmur but is otherwise in excellent health, as he runs daily. The patient is excitable, and makes barking noises when excited or agitated – as dogs often do.

I haven't received any spam or junk mail in his name since entering his profile two months ago. This may mean Google is serious about keeping medical information private…at least for now.

Advice: Consider using a personal health record to track your family's treatments, immunizations, and upcoming appointments.

We're the dancers of this life: Yena Marcovicci

Every ball gives you a new opportunity.
Your opponent on the other side of the court is your partner.
There is no failure.
The journey is staying in the moment, not in the score.


Yena Marcovicci died suddenly in the prime of his exuberant life at 62, in October, of a heart ailment. He had kept private the knowledge of the ailment.

He had been a long-time life coach and teacher of The Dance of Tennis at Omega Camp in Rhinebeck, New York.

We're the dancers of this life,
The healers of our world
Of the journey that whirls within
Challenging all that made this life.

Advice: Live as fully and uniquely as Yena, "free to love and free to share the true nature of our soul."

Thanks to Skye Marcovicci for the source poem by Yena Marcovicci, "Gypsy Warrior."

$180,000 of medical services and prescription drugs: Medical identity theft

In May, a woman in Edmonds, Washington was arrested for using another woman's identity to obtain nearly $180,000 worth of medical services and prescription drugs. Authorities say Barbara Reuter took her victim's personal information – including her date of birth, Social Security number and other information – and convinced doctors she was a real Medicaid client. She was caught when the health plan's billing department noticed duplicate billings for virtually simultaneous medical visits.

Medical identity theft can be just as time-consuming and frustrating to resolve as are the more common forms of identity theft that involve stolen credit cards or forged checks.

Advice: Shred your explanations of benefit forms before recycling them.

Thanks to Phuong Cat Le for the source story in the Seattle Post Intelligencer.

Enough information was not provided: Emergency response through VoIP

Using the Internet instead of a traditional phone to call 911 could complicate emergency response to your home, Canadian officials are warning.

The warning comes after the death of an Alberta boy that has been linked to a mix-up caused by use of an Internet telephone.

Voice over Internet Protocol or VoIP, which allows you to make phone calls through a broadband Internet connection, has been available in the Greater Toronto Area for about four years. VoIP service is available throughout York Region. One of its selling points is it can be less expensive to make long distance telephone calls than using a traditional phone service provider.

The reliability of making emergency calls with the Internet service became the subject of debate earlier this week after an 18-month-old boy died. Paramedics were dispatched to a Mississauga address after a VoIP 911 call instead of being sent to the Calgary address where the child was because enough information was not provided during the call and the Ontario address was on file for the customer.

A complication arises when VoIP providers do not have the technology to allow their subscribers to call 911, according to York Regional Police spokesperson Constable Marina Orlovski.

If you have a VoIP phone and move it to another location, such as across town to a relative’s home and call 911 from there, the information sent to an emergency call taker will appear as your home address — not where you are.

"We have the capability to receive the calls. It's up to the VoIP provider to make sure their clients, first of all, have the technology and second, that their subscribers know about (911 service) and they have a system for them to sign up," Const. Orlovski said.

The traditional 911 system, based on land line use, routes an emergency call to the correct 911 center, according to Markham Fire's public education officer, Dave Blizzard. Enhanced 911 service provides the emergency call-taker your name, address and phone number.

Markham Fire also warns that access to 911 service for VoIP customers may not be available during a power failure or if the Internet connection is down.

"A phone call from your home or a neighbour's home is still so important," Mr. Blizzard said.

A Canadian Radio-television and Telecommunications Commission (CRTC) ruling on Oct. 20, 2005, required all local VoIP providers in Canada to provide notice to current and prospective customers about the availability and limitations of their 911 and enhanced 911 service. The CRTC also ruled local VoIP providers would have to communicate their 911 service limitations to existing customers at least once every year.

Advice to VoIP customers: Find out if 911 service will work through your VoIP provider.

Read another story on getting prompt emergency response.

Thanks for Joe Fantauzzi of YorkTimes.com for the source article.

After three surgeries: Health advocates

After three surgeries, 63-year-old Judy Sherer of Norcross, Georgia still had chronic pain in her left shoulder. She'd lost faith in her doctors, and in despair, tried a new health benefit offered by her employer.

The service, Health Advocate, is a call-in center that helps customers find the right doctor, haggle over insurance coverage and manage other medical systems headaches.

An advocate helped Judy find a new surgeon, one who found metal shavings left in her shoulder in error by a previous doctor. The advocate also negotiated the charge for her physical therapy down to $40 per visit from the $200 charge she was told of initially.

"It saved me a ton of money," she said. “I’m very, very pleased.”

The largest customers of health advocacy services are companies, not individuals. "The employers are interested because it means their employees are not on the phone taking care of doctor's visits during work hours, says Carol Fischer, a spokeswoman for Pennsylvania-based health Advocate.

Advice to frustrated consumers: Consider using a health advocate.

Read another patient advocate story.

Thanks to Mike Stobbe for the source article in the July 27 issue of the Atlanta Journal-Constitution.

Why there's a market for these drugs: Obsessive-compulsive disorder

From James Vlahos' article about the pet owners' use of mood-altering drugs for their pets:

At the end of the day, Dr. Nicholas Dodman, leaning back in his chair, launched into a story about a human obsessive-compulsive-disorder sufferer he had met – a man who repeatedly tugged at his beard. Dr. Dodman asked him if he had ever stopped, and the man said he did during a hitchhiking trip across Canada. Dodman thought he knew why: "He went back to being a human being. He was watching out for real dangers. He was trying to go real places. He was concerned about his next meal. He was thinking about where he was going to sleep. And he wasn't concerned about the stupid beard-pulling, because now he had a real life. When did the problem start again? The minute he sat back in front of a flickering computer screen."

His theory, essentially, is that the causes of mood disorders and obsessions in humans and our pets aren't so different – faulty genetics, dreary environments. Whether cubicle- or cage-bound, we get too little exercise; we don't hunt, run or play enough to produce naturally mood-elevating neurochemicals. Strangely enough, I had already heard this theory – from a pharmaceutical company executive who, for obvious business reasons, didn't want to be named. "All of the behavioral issues that we have created in ourselves, we are now creating in our pets because they live in the same unhealthy environments that we do. That’s why there's a market for these drugs."

Advice: Being in natural surroundings can help people heal.

Thanks to James Vlahos for the source article in the New York Times Magazine of July 13.

You and your little furkid will benefit: Dog therapy visits

We had our very first therapy visit on Tuesday and I can't give an adequate description of how life-changing it was. It's so amazing to see what an effect this 12-lb. bundle of white fur had on people.

We recently completed a 16-week training course to become a certified therapy dog team. We graduated in mid-May and this week we made our debut visit to the brain injury rehab floor of St. John's Medical Center [in Missouri].

Before we even got to see a patient, Ms. Chelsea found herself surrounded by a visiting family. Her little tail was wagging furiously as she looked from one person to another. She was in her element being the center (literally) of their attentions.

Our staff coordinator didn't (and won't) tell us what the patients are in for, and it's none of our business really, but she did share some feedback with us after our visit. For example, our first stop was a young woman who had half her head shaved and a visible scar along her head. She was lying down and had trouble speaking (as did most of the people we visited). The minute she saw us come in, she asked for Chelsea to be placed next to her on the bed. I put her up there on her new pretty pink bath towel (to protect the hospital bed from fur) and this woman was clearly thrilled to be in the company of unconditional love. She kept petting her and Chelsea did a great job of staying put, just like we learned in class. The patient talked non-stop about dogs, her dog, and how she worked for the American Kennel Club and knew about all the breeds. We always work in teams so my fellow classmate Cindy was in there too with her dog Coco. This patient was so happy and energized by the presence of the dogs and just wouldn't stop talking. As we left her room, our staff coordinator pulled us aside and said, "She didn’t talk at all last week!"

And so it went the rest of the visit. We met with other patients who were in various stages of recovering from brain injuries/surgeries. Some had a hard time communicating or using motor skills but all of them did what they had to in order to pet our dogs. And some of them were very chatty and excited by our visit.

At the end of the visit, the coordinator told us they saw remarkable signs in the patients...cognitive thinking, biological changes, chronological knowledge, and a whole bunch of other markers that sailed over my head (I had a lot of things already swimming around in there). We walked out of there on a cloud.

To witness a dramatic impact like this is a gift. After getting through to that first patient, all the weeks of driving back and forth to class and all the practice we did just went right out of my memory. Just knowing we made a difference to one person made it all worthwhile.

If you have a dog, I can't urge you enough to look into being a therapy dog team. You and your little furkid will benefit in so many ways...a closer bond with each other, a more well-behaved canine citizen, relationships with classmates, and the knowledge and first-hand experience of helping people.

We will be visiting there twice a month.

Advice to pet owners: Look for ways to offer your pet's love to others.

Read another pet story.

Thanks to the source, my friend Victoria in St. Louis. Bravo to CHAMP Assistance Dogs!

Kernels of corn in their shoes: A simulation of life after age 85

They put on distorting glasses to blur their vision, and stuffed cotton balls in their ears to reduce hearing, and in their noses to dampen the sense of smell. They put on rubber gloves with bands around the knuckles to interfere with their manual dexterity. And they put kernels of corn in their shoes to mimic the feel of feet that have lost some cushioning fatty tissue – all to simulate what it can feel like to be age 85 or older.

Then to work: unfolding and reading a map with tiny type, blurred by the glasses, in order to plot a driving route. And buttoning a shirt, finding a number in the phone book, dialing the tiny buttons on a cellphone, fishing change from a zippered wallet.

Dr. Vicki Rosebrook developed this set of exercises, called Xtreme Aging, to teach middle-aged and young people sensitivity to the humbling difficulties that seniors can experience. As the Executive Director of the Macklin Intergenerational Institute in Findlay, Ohio, she teaches the program to people in schools, churches, and workplaces.

She started the company three years ago, after a teenage clerk at a hotel joked about her husband being a member of AARP. “We all started sharing experiences and realizing [the] discrimination.”

Advice to people in contact with elderly patients: Walk a mile in their shoes.

Read an example of compassionate care.

Thanks to Jim Leland for the source article in Sunday's New York Times.

In the middle of the night: A lawsuit on the patient dumping of an illegal immigrant

Luis Alberto Jimenez grew up in Guatemala, and then came to the U.S. illegally. His wife and two children stayed in Guatemala. He worked industriously in Florida for several years. On Feb. 28, 2000, a drunk driver hit his car, severely injuring Luis. Luis suffered a traumatic brain injury, along with extensive bleeding, two broken thigh bones, a broken arm, multiple internal injuries, and a terribly lacerated face.

He survived, after intensive medical and surgical interventions. The hospital sent him to a nursing home. In the nursing home, he wasted away, and developed ulcerous, infected bed sores so deep that the tendons behind his knees were exposed. The nursing home sent him back to the same community hospital. Again, the hospital provided life-saving care, though Luis remained in a vegetative state, coiled in a fetal position, for more than a year.

Stunning his doctors and relatives, though, Luis gradually woke up and started interacting with people. He regained a mental level roughly equivalent to that of a fourth-grade child. But he still needed much long-term care. He had no insurance, and the hit-and-run driver was uninsured, too.

Federal law requires hospitals that accept Medicare to transfer or refer patients to appropriate post-hospital care. But the government does not finance long-term care for illegal immigrants. The hospital's discharge planners could not find a rehabilitation program or nursing home in the U.S. that would accept Luis. The hospital eventually had an air ambulance pick up Luis at the hospital in the middle of the night on July 10, 2003, and fly him back to Guatemala.

After a brief stay in the under-equipped rehabilitation hospital in Guatemala, Luis was brought to his mother's home in rural Guatemala. His 72-year-old mother now cares for him. He has no medical care. Recently he has had several violent seizures. His mother says, "Every time, he loses a little more of himself."

Too late to help Luis, a Florida appeals court decided in 2004 that the American hospital should not have sent Luis away. The ruling set the stage for a personal injury lawsuit, brought by the law firm of Searcy, Denney, Scarola, Barnhart & Shipley in West Palm Beach, Florida. The lawsuit seeks money for medical care and punitive damages for Luis.

Advice for illegal immigrants with serious medical problems: Get a lawyer to fight for you.

Read another illegal immigrant’s story.

Thanks to Deborah Sontag for the source story in today's New York Times.

The journey started from a phone call in the back of a taxi: Learning of clinical trials of new drugs.

Courtney Hudson's story
Late one Sunday evening In January 1999, my husband called me on his cell phone from a taxi. He was seriously ill and on his way to the hospital. The doctors were able to stabilize him temporarily, but they recommended additional surgery. My husband refused to undergo what would be a long, difficult operation that would require months of recovery. I was obviously upset - not only about my husband's condition, but also about his apparent unwillingness to accept treatment.

I was torn between the competing desires to respect his choices and for him to get treatment immediately. I began to search for treatment options, mainly through the Internet, but found the information presented too simplistic, too scientific, or too voluminous. By chance, a friend in California sent my husband an article about an alternative surgery that had only recently been developed. This surgery was being performed only a mile from our home in New York, yet we had never heard about it. My husband underwent the surgery, and today is doing fine.

We were lucky, but access to new treatment options, including clinical trials, should not be serendipitous. This is a time when pharmaceutical companies, biotech companies and the government have enlisted the support of nearly 50,000 doctors to conduct more than 10,000 clinical trials each year -- almost one-third are designed to test new drugs and therapies for cancer patients. Patients and families should have a way to find these new drugs and therapies without having to depend on luck.

After months of interviews with patients, advocates, caregivers, and researchers, Sarah Hutter, Glenn Rice and I founded EmergingMed.com in January 2000 to offer patients and their families a fast and easy way to find and understand available treatment options.

We have created the EmergingMed online matching and referral system to reliably connect patients directly to the doctors conducting clinical trials in a matter of minutes.

This personal journey, which started with a phone call from the back of a taxi, will hopefully benefit many others by providing more options for their own treatment and by accelerating the clinical research process that develops new drugs and therapies for all of us.

Advice to patients thinking of surgery: Figure out all your options first.

Read another clinical trial story.

Thanks to Courtney Hudson for the source at the EmergingMed.com website.

An extension of his work as a doctor: A memoir by a sufferer of Lewy Body disease

Fifteen years ago, he had been a member of the Cardiology "Dream Team" assembled by the Boston Celtics to evaluate Reggie Lewis after he collapsed during an NBA playoff game in 1993. And he was a professor at Harvard Medical School.

But nowadays the former marathon runner is stooped, and shuffles when he walks. Most notably, the disease has robbed him of the ability to communicate clearly, logically and quickly. Dr. Graboys has Lewy Body dementia, a syndrome that affects a third of Parkinson's patients.

Even with this humbling disease, Dr. Graboys was eager to tell his story because he thought it might be helpful to others facing their own medical struggles. He wanted to capture his experience on paper quickly, because he didn't know how much longer he would be able to tell his story.

He contacted Peter Zheutlin to write his story. Dr. Graboys was an unusually gifted clinician and an unusually compassionate doctor who believed his most important diagnostic tools were his ears; he listened, and his patients loved him for it. In turn, he valued each patient's trust as a gift offering a window into the human condition.

Over the course of a year, he and Peter met twice a week at his home in a suburb of Boston, and he gave Peter an intimate tour of his life and his mind Peter's book tells of the toll the illness has taken on his sex life. It may be too frank for some, but Dr. Graboys was intent on being as brutally honest as possible. As a physician, he had created an atmosphere in which patients felt safe in disclosing their most personal concerns. He understood that mny of them were relieved to find a physician with whom they could talk comfortably about sex.

The book became a focal point of his life after he had to retire from medicine in 2005. Writing it was an extension of his work as a doctor. He proved that despite what he lost, he could still share abundant knowledge and wisdom.

Advice to people with a chronic illness: Tell your story to share your life lessons.

Read another story about Lewy body disease.

Thanks to Peter Zheutlin for the source article in the June/July issue of Metrowest Magazine.

I’m sooooo beat up: An overworked nurse's medication error

I've been an LPN for a month. I made a med error this week...Gave .50 mg of Ativan instead of .25 mg. Devastating.

On top of that, I was called into the ADON's office to see how they could help me from having so much overtime on my charting.

I'm soooo beat up. I have 40 residents to care for, and I had CNA's that were gone during the 6am med pass to leave me alone with my residents taking them to the bathroom, etc...They didn't ask to break, and if they had, I would have asked them to wait until my meds were passed.

I try hard to allow as many breaks as possible. I try to help them, because I know what it was like being a CNA...needing help and not getting it...

Here I am...

Med Error, Overtime...

I feel I already take too many "short-cuts" for a new LPN to be taking, and some of the things that go on on 3rd shift...that we are "taught" to do...I won't do anymore. It's not worth it to lose my license.

I hope it is not too late for me.

Advice to people needing to go into the hospital in July or August: Bring a patient advocate, as the new crop of residents has just begun work.

Read another story of an overworked nurse.

Thanks to LookingBeyond [no name given] for the source blogpost today at allnurses.com/forums.

He needed surgery again: A settlement for a defective artificial hip gets justice for one, but no registry for all

Months after his hip replacement, "the pain was grabbing me around the back," said Stephen Csengeri, a 54-year-old lawyer from California. He needed surgery again because of the pain. He has reached an undisclosed settlement with Zimmer Holdings, the maker of his metal hip socket.

His orthopedic surgeon, Dr. Lawrence Dorr, realized that Stephen was one of many hip replacement patients with the same problem. Dr. Dorr contacted the device's manufacturer. X-rays showed the socket was separating from bone, rather than fusing with it. For patients, who had been told their new hips might last 15 to 20 years, it meant agony as the metal cup moved around in the hip socket and rubbed against bone.

One doctor told Dr. Dorr, "If ever there was an example of why we need a registry [recording all patients’ hip appliances], this is it." A registry is a database of each patient, the brand, model and type of appliance implanted, the surgical technique used, the doctor, and any subsequent replacement. Orthopedists in Sweden and Australia have used such registries to learn of systematic problems with particular devices. But there is no registry in the U.S. As a result, there is no systematic way for the public to know of patterns of problems.

Advice to joint replacement patients: Look into the devices beforehand on domestic and foreign registries and on the Internet.

Read another medical device lawsuit story.

Thanks to Barry Meier for the source story in today's New York Times.

I am downright annoyed with my diabetes: Self-care

Motivation Consternation
I don't know about you, but I find that the novelty's wearing off. After nearly three years of continuous carb counting, fingerstick checks, pills, injections, lab tests, prescription woes and doctors' appointments, I am officially DOWNRIGHT ANNOYED with my diabetes. I find myself wondering how the veterans do it. How do you "keep up the good work" as your diabetes care drones on and on over weeks, months, and years?

Seems like it's quite natural to go through up and down phases, for sure. But even with the most diligent of care, diabetes can be terribly unpredictable. And often our test results just don't seem to show improvement. Don't you just want to scream? Or give up?

But of course we must soldier on. It might help to examine these feelings more closely, and there must be some proactive things we can do to kick-start our motivation every so often.

Failure & Burnout


Feeling like a failure? You are not alone. Some of the most motivated, well-informed diabetics I know are still asking themselves, "What am I doing wrong?" because their blood sugar levels aren't in "perfect range." I must say that if I learned anything from my endocrinologist, it was that "sometimes the magic works, and sometimes it doesn't." When we have bad diabetes days (or weeks), we just have to pick ourselves up and move on.

But of course, there's a boatload of guilt associated with less-than-optimal care. Maybe you've been ignoring your diabetes or struggling with it for many years, and feeling pretty crummy. And all the negative headlines about diabetes and heart disease, gum disease, kidney damage, blindness, etc. certainly don't help your incentive.

I know people with other illnesses have to be diligent, too, but I strongly believe that no other disorder requires such intense, round-the-clock attention and motivation as diabetes does. It can really grind you down. Like Dr. William Polonsky, author of the book "Diabetes Burnout" says, "In order to get everything right all the time, you'd have to be a 'Professional Diabetic.' You'd never have time for anything else…

So you have to find a balance between making an effort for good control and having a life."

A New Toy, or Study Me


Sometimes a new gadget or treatment can really make a difference. I've met quite a few Type 1 diabetics who either get themselves a new meter or new pump periodically, or sign up for clinical studies on a regular basis. Ideally, the new gadget makes a significant improvement in your quality of life. For example, I was delighted when I got the FreeStyle Flash glucose meter, because it requires just a tiny blood drop, and it's small enough to fit into a cute, fashionable purse (instead of that suitcase I'd been carrying)!

Another gal I know was delighted with the MultiClix Lancing Device because she finds it painless and convenient (pre-loaded lancets mean less waste and carrying load).
Being part of a clinical study means your health gets lots of extra attention, both from yourself and from the medical professionals running the study. Added benefits are free stuff – the sponsoring company pays for supplies and exams – and the knowledge that you are helping the diabetes community and further generations by fostering important research. Some people find they get their best care and motivation under this kind of close scrutiny.

Amy Tenderich’s Advice: It's worth asking your CDE (Certified Diabetes Educator) about new products and research opportunities (those without any serious health risks).

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

Thanks to blogger Amy Tenderich for the source story at DiabetesMine.com

So I might as well do it: Pan-Mass Challenge

Rebecca Hopkins, now a junior at Salve Regina University in Newport, Rhode Island, has survived a brain tumor, surgery, chemotherapy and radiation. She will be one of 5,000 bike riders next week in the Pan-Mass Challenge, the annual 192-mile bike ride to raise money for the Dana-Farber Cancer Institute.

She will ride in honor of her doctor, Samuel Blackman, who treated her when she was a teenager.

"To be able to help people and give them a better life, that's great," she said. "It's something I can do, so I might as well do it."

She was first diagnosed with cancer at age 11. Part of her brain tumor was removed, but began to regrow in a few years. After radiation, she is now virtually symptom-free.

Dr. Blackman says, "When you save a pediatric patient, you don't just save a life, you save a future. Rebecca and her fight are proof positive of that. This is a person who I know is going to make a difference in this world."

"We have the cachet of being the Tour de France of charity events," said Barry Starr, the founder of the fund-raising event.


Advice to cancer survivors: Keep on truckin’. And bikin’.

Read about another Tour de France cyclist and cancer survivor.

Thanks to Adrian Walker for the source article in today’s Boston Globe.

I'd land at the hospital again, if not for this: Telemonitoring

Mariano is 87 and lives in a suburb of Boston. He struggles with "a few health problems – heart failure, glaucoma, and I know I have some [heart] ventricles that are not functioning properly."

He's one of five million people who are living with heart failure. It's a chronic, life-changing condition that impacts his whole family. His daughter Michele visits frequently to help take care of him.

"Everybody in that position knows it's difficult," he says.

After his most recent hospitalization, he came home with a new type of helper. "I'm being checked every day by nurses, at headquarters, I presume. The nurse contacts me separately. If I put on a pound or two, I get a call, sure as heck. That helps so much! I'd land at the hospital again, if not for this."

He's a participant in the Cardiac Connect Program at Partners Healthcare, which was designed for people with heart failure. It brings state of the art equipment to homes, to help monitor heart conditions daily.

"What's important for cardiac care is what patients do daily at home. Telemonitoring is a great tool," according to Dr. Stephanie Moore. "What's important is NOT what is in the 20-minute office visit, and what they say they're doing, but what they're really doing at home."

Patients use the equipment at home to monitor their heart rate, oxygen levels in their blood, and their weight. They answer a few questions about how they're feeling, which takes a few minutes, and that's transmitted electronically to the Home Care program's nursing station.

"The system identifies any problems, and we'd call those patients immediately," says nurse Susan Leonard.

They might ask, "I've noticed your weight has gone up by two pounds. How are you feeling? Did you have a lot to eat with sodium yesterday?"

Mariano's daughter Michele says, "It make me feel comforted that he can operate it himself and knows what ranges he should fall in."

He says, "It created a little more confidence. Once the machine is gone, I'll do my best to carry on, since I know the Why's, and the If's, and the Don'ts."


Advice to people with serious chronic illnesses: Ask your insurer and doctor what kind of ongoing help they can give you.

Read a story on the role of education in coping with chronic illness.

Thanks to the Center for Connected Health for their source video.

Without getting out of my chair: A medical home

Robert Williamson, a 60-year-old Philadelphia resident, recalls the cursory exam he received a few years ago from a harried doctor who missed seeing some danger signals, and sent him home. Robert had a stroke a short time later. He had to stop working as a customer service representative, and go on Social Security disability.

Missed diagnoses like these should occur more rarely with his new doctor. "I give him my heart and diabetes readings by email and phone, without getting out of my chair," Robert says. "I can get better directions, at the very moment I need them. It's life-saving."

Some of the area's largest insurers are conducting an experiment with 100 physicians. In addition to paying for office visits, the insurers are paying the medical groups to keep better track of their patients by phone and email. The doctors are encouraged to hire additional staff to monitor patients' treatment and follow-up, and send reminders for mammograms, colon exams, and other forms of early detection. Robert's doctor has hired a patient educator and has acquired supporting technology.

This model of primary care provides a "medical home" where doctors, patients and families will ideally pull together as a big, happy family. Insurers are studying whether this will lower their costs and improve patient satisfaction.

Advice: Ask your primary care physician whether he or she can contact you proactively and regularly about follow-up care and upcoming appointments for early detection.

Read another story on how a more modern doctor's office feels to a patient.

Thanks to Milt Freudenheim for the source story in the July 21 issue of the New York Times.

Is it better to bring 8,000 individual cases?: Pathology errors in breast and prostate cancer biopsies

Patients impacted by a misdiagnosis and the quality of service at the Miramichi Regional Hospital will file a class-action suit on Tuesday.

Halifax lawyer Raymond Wagner will file the proposed lawsuit in Miramichi on Tuesday. It is available to any patients who had a biopsy or other procedure at the Miramichi Regional Hospital between 1995 and February 2007, regardless of their test results.

"They suffered great mental distress, frustration, and needless anxiety while awaiting confirmation that the original results were correct," he said.

The province is reviewing more than 23,700 cases from the hospital dating from 1995 to 2007 while a public commission is examining the rate of breast and prostate cancer misdiagnoses.

An independent audit of 227 cases of breast and prostate cancer biopsies from 2004-05 found 18% had incomplete results and 3% had been misdiagnosed at the health authority in northeastern New Brunswick, which was being served by a now-suspended pathologist.

Filing a lawsuit will hold the system accountable, Wagner said, adding that arguments revolve around allegations of negligent hiring and poor quality control at the pathology department.

"The suit of course is to assist the people in the community surrounding the Miramichi with respect to their health care," he said. "It is to bring to account the hospital administration with respect to oversight and quality control and to assure the community that their health care is of sufficient quality for them to have confidence in that health care."

A judge will have to decide if the suit will go ahead, which will involve testing whether the lawsuit is the most efficient way to proceed, Wagner said.

"Is it more appropriate and more efficient to have the case determined in one case, or is it better for everybody to bring their own individual cases, in other words 8,000 cases?" he said.

The Halifax law firm, Wagners, is working in co-operation with Newfoundland and Labrador firm Ches Crosbie Barristers.

Advice: Pathologists have to use very subjective judgments in assessing biopsies. Ask the pathologist how certain s/he is about the findings of your biopsy.

Read another Pathology error story.

The source article comes from a posting today on the Canadian Broadcasting Corporation's website.

More days happy than in the blues: A coach for diabetes care

Maria is a 66-eary-old Hispanic woman with diabetes. She receives her primary care at Massachusetts General Hospital's Chelsea health center. At her last visit in June of 2006, Maris had far too much glucose [sugar] in her blood; her hemoglobin HbA1c was 12.6, far more than a normal level of about 7. Her doctor referred her to a diabetes "coach," a multilingual, bicultural layman trained to identify barriers to care management and to assist patients in addressing barriers.

After several counseling sessions, the coach learned that Maria was taking one of her medications "only when I feel my blood sugar is too high," and was not taking her other medication at all because "it makes me dizzy." Maria was overweight, and ate a lot of rice, bread, pasta and other carbohydrates, and foods high in cholesterol like pizza, pork, meat, and fried food. She would not eat at all when she felt that her blood sugar was elevated. She was not exercising and reported often feeling depressed and "in the blues."

After working with the coach, Maria began taking both of her medications regularly and eating better. She cut down on carbohydrates and started eating more vegetables and fruit. She also ate more frequently in small portions. Due to her arthritis, exercise was a challenge for Maria, but she managed to walk 20 minutes on most days. In just a few months she lost 30 pounds. After 11 sessions with the coach, Maria felt very pleased with her progress, she is more confident, and has "more days happy than in the blues." When last seen by her coach in December, Maria's hemoglobin HbA1c had fallen to 7.7.

Advice for people with diabetes or another chronic health issue: ask your insurer to assign you a health coach.

Read an athlete’s diabetes story.

Thanks for our source, the 2006 Annual Report on Mass General's Community Benefit Program.

An hour after being discharged from the Emergency Room: A family physician's conflict of interest

Question for the Ethicist:
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 to comply with this request?
-J.R., Connecticut

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 offered 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.

Read about another ethical issue.

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

His last, best and only chance: Experimental drug for Duchenne muscular dystrophy

Doctors discovered that Jacob Gunvalson had a rare and devastating genetic disorder – Duchenne muscular dystrophy - when he was 7 or 8, about eight years ago. Many of the young men who have the disease, which nearly always affects males, do not live past their 20s. A biotechnology company is now testing an experimental drug, PTC124, which would give Jacob "his last, best and only chance to slow, stop or even reverse the effects of his condition," according to his attorney, Michael Hatch.

But the company refuses to give Jacob the drug, as he does not meet the narrow guidelines for the research protocol. The reason: scientists at the company worry that it may not be effective for a patient at Jacob's stage of the disease: Jacob can no longer walk. If the drug is known not to be effective in him, the company executives worry that that news may block the company's chances of proving it is effective and bringing it to market.

Jacob's mother Cheri, who has a masters degree in nursing, seems to have done all the right things. She has been active in a parent's advocacy group, Parent Project Muscular Dystrophy, which has helped PTC Therapeutics, the drug maker, to find financing for its research. Indeed, she was instrumental in getting federal legislation passed to provide more research money for the disease.

The company may even have told her that it would give Jacob the drug. Drug companies sometimes allow patients access to experimental drugs through a "compassionate use" policy. In this way, patients enroll in a single-patient study, or participate in a clinical trial, even if they do not meet the eligibility criteria and their results are not included in the final study.

In the absence of that, both Jacob and his mother are bitterly disappointed, after thinking "so many times," he said, that he would receive the drug. He is increasingly too tired to do some of his favorite activities like cooking and painting.

Advice to family members of gravely ill patients: Explore compassionate use if an appropriate drug is in clinical trials. If the answer is no, take your story to the news media.

Read an experimental drug story.

Thanks to Reed Abelson for the source article in the July 17 issue of the New York Times.