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Tuesday, September 30, 2008

I had gone to the doctors too many times: Patient's research for misdiagnosed restless legs syndrome

Often patients begin doing health research because their own doctors don't seem to have the right answers. All her life, Lynne Kaiser, 44, of Plano, Texas, suffered from leg pain and poor sleep; her gynecologist told her she had "extreme PMS." But by searching the medical literature for "adult growing pains," she learned about restless legs syndrome and a doctor who had studied it.

"I had gone to the doctors too many times and gotten no help and no results," she said. She is now a volunteer patient advocate for the web site WhatIsRLS.org. The new doctor she found "really pushed me to educate myself further and pushed me to look for support.

Tara Parker-Pope’s Advice: Tell your doctor about your research.

Read another delayed diagnosis story.

Thanks to Tara Parker-Pope for the source article in today's New York Times.

Monday, September 29, 2008

She moved to the poor farm: Fatal complications in the bad old days

It's the Jewish New Year, a time to look back, and look forward. It's important to see just how far we've come in making people healthier. Here's a story from 100 years ago:

A stately black gate and two handsome brick columns mark the entrance to what was once a humble potter's field in Oshkosh, Wisconsin, the final resting place for 485 souls of the poor, unwanted or insane laid to rest between 1888 and 1956.

The sad case of Ida Weissenhorn, 29, who worked as a servant at the Henry Long Saloon, unfolded in newspaper accounts and records that local genealogist Janet Eiler found. Pregnant and unmarried, Ida moved to the poor farm. Her baby daughter was born and died the same day from a form of tuberculosis common in children. Ida died a couple weeks later of blood poisoning, a complication of childbirth.

Through improved public health measures and personal hygiene, of course, TB and such complications of childbirth are exceedingly rare nowadays.

Advice: Enjoy a year of good health, and be glad you were born in this century.

Read another story from long ago.

Thanks to Patricia Wolff for the source story in yesterday's Northwestern.com of Oshkosh, Wisconsin.

Sunday, September 28, 2008

Go for it, I say: A loving companion to a husband with dementia

My 79-year-old husband, the love of my life, is having an "affair" with a young single woman named Jenn. He and I fell in love more than half a century ago and have lived together for 22 years, but I have no regrets about the liaison. Go for it, I say. Be my guest.

She's focused, patient, relaxed. These are prime qualifications for my husband's companion, ever since he fell from a sleeping loft four yeas ago and suffered a traumatic brain injury. He was catapulted into a state resembling Alzheimer's Disease, left unable to remember anything that happened from then on or to find his way home from across the street.

Drugs are sometimes prescribed for the typical symptoms of frontal lobe brain injury of agitation, cursing (disinhibition), and combativeness that greet a new companion. But these drugs do nothing to soothe his agitation, and can also produce terrible side effects. Worse, recent studies find that they work no better than placebos in the elderly.

The only reliable treatment for agitation like his is patience, calm, and understanding. Instead of regarding my husband's comments as incoherent rants, as others do, she sees in his dementia a kind of courage: a willingness to call the emperor naked.

Then perhaps it should not have surprised me that before the end of the second week, when other caregivers would just be starting to earn his trust, she reported that he seemed to believe they were having an affair. She realized what was on his mind when he started speaking of his guilt over their "secret."

Not that he ever makes sexual advances or overtures toward her. She's assured me of tat, and I believe her. He loves me more than ever, now that he's dependent. Besides, I'm sure that he, like me, has never been unfaithful.

It's just that without short-term memory to provide context, the events of daily life must seem incomprehensible or absurd, but being human, he can't stop trying to make sense of them anyway.

Still unaware four years later that anything is wrong with him, how should he explain Jenn’s constant presence?

Now that my husband's days are spent in the presence of an attractive like-minded young woman who holds his hand wherever they go and acts like a soul mate, what better explanation can there be than that they're a couple?

Advice to spouses of elderly people with dementia: Do your best to find a loving companion for them.

Read another Alzheimer's story.

Thanks to Alix Kates Shulman for the source article in today's New York Times.

Saturday, September 27, 2008

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.

Friday, September 26, 2008

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.

Thursday, September 25, 2008

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.

Wednesday, September 24, 2008

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.

Monday, September 22, 2008

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.

Sunday, September 21, 2008

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.

Tuesday, September 16, 2008

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.

Sunday, September 14, 2008

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.

Saturday, September 13, 2008

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
 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
 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
 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
 seemed to be racing up my SPINE (hind-sight, it was
 probably my aorta
 gaining speed as they continued racing up and under my
 sternum (breast
 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
 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 
 hand, if I don't, nobody will know that I need help,
 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
 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
 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 
 in. I unlocked the door and then laid down on 
 the floor as instructed and lost consciousness, as I
 don't remember the
 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
 "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
 cardiologist and partner had already threaded the teeny
 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
between my arrival and the procedure) and installing the
 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
 what I learned first hand.

A nurse’s advice:
1. Be aware
 that something very different is happening in your body not
 the usual
 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
 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 ...
 doesn't happen. My female friends, your symptoms might
 not be exactly
 mine, so I advise you to call the paramedics if ANYTHING is
 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
 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
 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
 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
 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.

Friday, September 12, 2008

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.

Thursday, September 11, 2008

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.

Wednesday, September 10, 2008

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.

Tuesday, September 9, 2008

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.


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

Read a kidney exchange story.

Monday, September 8, 2008

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.

Saturday, September 6, 2008

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.

Friday, September 5, 2008

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.

Tuesday, September 2, 2008

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.