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Wednesday, January 31, 2007

"He's otherwise a good physician": A surgical error

In June, a Massachusetts surgeon set out to remove an 84-year-old woman's gallbladder with a fiber-optic instrument called a laparoscope. Unexpectedly, he found a significant amount of organ inflammation and bleeding during the procedure, so he switched to open surgery to address the problem. However, he misinterpreted the results of a medical test during the procedure, so he operated in the wrong anatomical area. He dissected and removed the woman’s right kidney instead of her gallbladder. The error was only discovered when a pathologist tested the removed organ three days later. The patient was transferred to an academic medical center, where her condition improved. In fact, she has not since needed her gallbladder removed.

The state Board of Registration in Medicine has now finished its investigation. It noted that the award-winning surgeon had no other action against him in the past. The Board’s spokesman commented that while the incident warrants close observation, "oftentimes, it doesn't do anybody any good to remove a physician from practice if he is otherwise a good physician." I agree.

Advice to patients: When a surgeon advises surgery, get a second opinion from a doctor who is not a surgeon. This woman did not need her gallbladder--or her kidney--removed.

Read another kidney story, or read the full newspaper article by David Riley.

Tuesday, January 30, 2007

They don't count non-surgical towels: A surgical error

Steve's story

I was in the hospital for a totally unrelated issue when they found the tumor. The tumor was small, and it was supposed to be a simple surgery. The doctor left a one foot by 2 foot BLUE NON-SURGICAL TOWEL FOLDED UP UNDERNEATH MY KIDNEY. I had leucocytosis, and a MAJOR INFECTION. I was close to death. This towel was a towel that should never have even been placed inside of me. There was no way for the doctor to do an accurate count because they DON'T COUNT BLUE NON-SURGICAL TOWELS. The doctor lied to me about leaving the towel inside me. He wrote two different sets of post-op notes. He came in 8 hrs after the 2nd surgery and told me that a clip had obliterated the UPJ and that is why he removed my kidney. He did not mention a BLUE NON SURGICAL TOWEL until he was forced to tell me. He had no intention of telling me or my family until hospital administrators forced him to. He took a perfect kidney from me. I am in constant pain because I was cut open twice in less than 3 weeks. He told me I would have a full recovery and I could continue doing the things I normally do. HE LIED TO ME. What makes you think the doctor won't lie to you?

Advice to hospital VPs of Nursing:
Tell your O.R. nurses to routinely count all the towels placed in patients.

Read the full story by Leonard Ortiz, or read of another rare surgical error.

Monday, January 29, 2007

"Mommy, your eyes are yellow!": An adverse drug reaction

Beth Hollister lives a fast-paced life. She's a mother, homemaker and a world-traveling business woman: "I don't get sick. I'm somebody that works 40, 50, 60 hours a week."

She's just now getting enough strength to get back on the road after suffering a severe drug reaction two years ago. She said, "My son actually came to me one day. He said, 'Mommy, your eyes are yellow.'" The medicine she had been taking for an ear infection led to a much bigger problem. Her liver was failing; it couldn't process ("metabolize") the drug. Two years later, after discontinuing the medicine, Beth still feels the drug's effects. Now: "I feel like I'm just getting back on track, but that I still have some fatigue." Tired -- but getting better every day.

As the liver doctor who diagnosed Beth's problem commented, "Different people need different amounts of drugs. Every drug, even the best drugs, can be bad for some people."

Advice: Remember that even common drugs can cause problems in the wrong patient. And listen to your kids when they speak as your health advocate.

Read another adverse drug story, or read the full account of this one.

Sunday, January 28, 2007

Why Did I Miss It?: A misdiagnosis

The Emergency Room doctor's story:

Evan McKinley (not his real name) was hiking when he felt a sharp pain in his chest. He was a forest ranger in his early forties, trim and extremely fit. He had felt discomfort in his chest for several days, but this was more severe: it hurt each time he took a breath. He decided to see a doctor in a nearby hospital’s emergency room.

The emergency room doctor noted that McKinley had never smoked or been overweight; had no family history of heart attack, stroke, or diabetes; and was under no particular stress. His family life was fine, he said, and he loved his job. His blood pressure, pulse, lungs and heart appeared normal when the doctor examined him, and an electrocardiagram (EKG), chest X-ray, and blood tests also seemed normal. The emergency room doctor concluded that McKinley must have a muscle strain, and told him not to worry about the chest pain.

The next morning, McKinley had a heart attack (an acute myocardial infarction) that could have cost him his life. The doctor later explained, “Why did I miss it? I didn’t miss it because of any egregious behavior, or negligence. I missed it because my thinking was overly influenced by how healthy this man looked, and the absence of risk factors.”

Emergency room doctors have a particularly difficult diagnostic challenge because they often have very little information on a patient’s history.

Advice to patients: Keep your personal health information with you at all times. If you have to go to the E.R. with a condition that is difficult to diagnose, it might help the doctor save your life.

Read another emergency room story. Or read the full article on this by Dr. Jerome Groopman in the New Yorker.

Saturday, January 27, 2007

Stent Safety & Blood Clots: Medical devices

The new drug-coated stents are much more likely to create blood clots than are the older bare metal stents. That is a conclusion of a synthesis of 14 studies, reported at the Cleveland Clinic in the December 2006 issue of the American Journal of Medicine. The increased risk of blood clotting (thrombosis) is associated with an increased risk of heart attack and death. The two FDA approved drug eluting (emitting) stents are Johnson & Johnson’s Cypher Stent (which emits sirolimus) and Boston Scientific’s Taxus Stent (which emits paclitaxel).

The researchers recommend that patients with Johnson & Johnson Cypher stents should take anti-clotting drugs for two to three months following implantation, and those patients with the Boston Scientific Taxus stents should take anti-clotting drugs for six months or more following implantation. Anti-clotting or anti-platelet drugs such as Plavix (clopidogrel) and aspirin are often prescribed after the stent procedure.

Advice for patients, their friends and advocates: Ask your doctor what kind of stent you have, and what this "meta-analysis" means you should do.

Read one of our stories about a medical device error or read more about this from our source at Parker & Waichman.

Friday, January 26, 2007

Where his Gall toward Eisenhower Came From: A surgical error

Sometimes surgical errors change people's lives in odd ways. Indeed, sometimes the lives of many people are affected--though we don't learn about it for quite a long time. One example appeared in this month's Atlantic magazine, 50 years after the fact.

Anthony Eden, the long-time Foreign Secretary of the United Kingdom, underwent an operation to remove his gall bladder, and the surgery was botched. For the rest of his life he was plagued by the after-effects; he needed four later operations to undo the damage.

During a crisis in the Middle East in 1956, Britain reasserted its colonial interests in the Suez Canal, joining France and Israel in fighting the Egyptians. Pres. Eisenhower tried to get Eden and the British to withdraw. Angrily Eisenhower demanded in a phone call, "Have you gone out of your mind?!" The answer in the Atlantic article: "Probably yes: Eden had undergone a botched operation which had nicked his bile duct and was suffering from what might politely have been called 'stress.'" In describing the ill effects of the earlier surgery, one of Eden's later surgeons wrote that Eden had a fever of 106 degrees at the time, and concluded that he was subject to recurrent fevers and postoperative disability at important times in his career and during international crises. The surgical error that had occurrred in 1953 apparently affected the lives of British, French, Israeli, and Egyptian soldiers, and their families, three years later.

Read another story of a surgical error affecting a famous ruler or read Christopher Hitchens' article, "Imperial Follies," Atlantic, January/February 2007.

Thursday, January 25, 2007

Good News on Cancer!

Happy to hear that the number of cancer deaths in the U.S. has dropped for the second straight year. Even more importantly, the death rate from cancer has been falling about 1% a year since 1991.

By far the greatest decreases are in colorectal cancer, especially because more people are now screened for it. See our story on this. There are several fun screening methods to choose from--stool tests, colonoscopy (a scope of the entire intestine), and sigmoidoscopy (scope of the lower intestine). Only half the adults who should be screened have been screened. Screening rates are even lower for blacks.

Advice: Ask your middle-aged friends, especially your black friends, if they have been screened. Click the envelope icon just below here to tell them.

Read more in Denise Grady's NY Times article on Jan. 18.

Wednesday, January 24, 2007

Multiple Deliberate Overdoses--I'm Smoking

Excuse me, Readers, but if you want a calm, reasoned post, skip this one; I gotta rant here--my first time.

Researchers at the Harvard School of Public Health concluded in a study released Jan. 18 that in the last few years cigarette makers deliberately boosted nicotine levels in cigarettes to hook smokers.

Nicotine is a weapon of mass destruction. As our religiously minded readers can agree, this is evil. Big Tobacco executives are addicted to money, and our friends who smoke suffer for it.

Advice to non-smokers: Money talks to the cigarette makers. Make sure your savings don't finance Big Tobacco--look at your mutual funds, and if they invest in tobacco companies, move your money elsewhere.

Tuesday, January 23, 2007

Art Buchwald's Choice: Hospice care

The well-known humorist Art Buchwald died on Jan. 17, after a year-long curtain call. He wrote a final newspaper column, excerpted here:

Now, to get down to the business at hand, I have had many choices concerning how I wanted to go. Most of them are very civilized, particulary hospice care. A hospice makes it very easy when you decide to go.

Everybody has his or her own opinion as to how you should go out. All my loved ones became very upset because they thought I should brave it out--which meant more dialysis. But here is the most important thing: This has been my decision. And it's a healthy one.

The person who was the most supportive in the end was my doctor, Mike Newman. Members of my family, while they didn't want me to go, were very supportive, too.

I chose to spend my final days in a hospice because it sounded like the most painless way to go, and you don't have to take a lot of stuff with you.

My mind keeps turning to food. I have not eaten all the eclairs I always wanted. I have found it hard to go past the Cheesecake Factory without at leave having one profiterole and a banana split.

I'd like to think some of my printed works will persevere--at least for three years--[maybe] it will wind up on a cereal box top.

Monday, January 22, 2007

Ahem--The Epidemic that Wasn’t: A lab error

Hospital staff were coughing and couldn’t stop. If it was whooping cough, it would have to be contained immediately. So 1,000 healthcare workers received a preliminary test, and were furloughed from work until the results came back. More than 100 heard that they had the disease. Thousands received antibiotics and a vaccine. Eight months later, they all learned it was a false alarm: no one had been infected.

Infectious disease experts at the highly respected medical center now know that a quick and highly sensitive test misled them. A slower, much more certain test showed the error—long after the fact.

A lesson for laymen: a positive test that claims someone has a disease can be wrong, and is wrong a certain fraction of the time. And a test that says someone does not have a disease can be wrong, and indeed is known to be wrong, a certain fraction of the time. Trust, but verify. See our story of an apparent negative result that wasn’t.

Source: Gina Kolata, “Faith in Quick Test Leads to Epidemic that Wasn’t,” NY Times, Jan. 22, page A1 & A17.

Sunday, January 21, 2007

Don't rock the boat, the experts told her father: Misdiagnosis

Pat's journey has taken decades. And she isn't cured. She lives with her illness the way diabetics live with theirs. But now she has graduated cum laude from college, and has a job. She hopes to work in human services and counsel people. "This is the next phase of my life, helping other people not be trapped by this illness."

Now 54, she had lived for long years in the best hospitals, diagnosed and misdiagnosed: depression. Paranoia. Bipolarity. Schizophrenia. But her father didn’t listen to the experts who told him not to rock the boat, to just to let her be stable, and live the life she knew, sheltered and safe.

The secrets of her eventual success in getting to health? Her father’s persistence. A creative hospital program that helped her re-invent her life. A new drug, Clozaril. And as her proud father says, the fact that "Pat never once said, 'I can't do something.'" By themselves, none of these were enough, but together, they have given her back her life.

Read her full story in Beverly Beckham‘s article in the Boston Globe.

Saturday, January 20, 2007

Fortunately for me, he didn’t listen: Missed diagnosis

It took Madison, North Carolina resident Peter Griffin nearly 30 years to receive the medals he earned in Vietnam and just as long to acknowledge something he brought back with him from the war - post-traumatic stress disorder (PTSD).

“I was 17 when I joined and only 18 when I shipped out to Vietnam,” he said. “Combat is difficult enough for hardened veterans, but so many of us in that war were still just teenagers.”

Peter served with the 101st Airborne Division and the 82nd Airborne Division. He earned the Vietnam Service Medal with two bronze battle stars, the Silver Star Medal, the Army Commendation Medal, the Presidential Unit Citation with oak leaf cluster and the Valorous Unit Citation.

Later, as a civilian policeman, he was injured in a fall from a roof while chasing a suspect. At a Veterans Affairs hospital for a checkup, he discussed with doctors the other symptoms he was experiencing.

He sought out a Department Service Officer (DSO), James Ward, while trying to get the Silver Star he earned during a battle in Vietnam. When Ward asked him to describe the incident in which he earned the medal, Peter became agitated and began having flashbacks. The DSO recognized his symptoms and encouraged the veteran to let him file a claim. “I told him I didn’t want him to do it because I didn’t want to be labeled with another disability,” Peter said. “Fortunately for me, he didn’t listen.”

A call from a VA hospital and a series of tests from doctors and psychologists confirmed the DSO’s suspicions and set Peter on a course of treatment to conquer the demons he had long lived with.

PTSD is the result of a psychologically distressing event that produces fear, terror and helplessness in the victim, representing a threat to the victim’s life or a loved one’s life. It shows itself in vivid and troubling flashbacks, emotional numbness, hyper-vigilance, poor sleep habits, poor concentration, and exaggerated irritability. Those symptoms are often accompanied by depression, anxiety, survivor guilt, suicidal urges, nervousness, drug or alcohol abuse, aggressive behavior and changes in cognitive functions.

Peter wrote his story in a book in the hope that “it will be a help to others out there suffering through the same hell I was going through.”

Thanks for your courage then and now, Peter.

Advice to veterans: Tell your story to a friendly advocate who’ll insist on helping you even though you’re just fine, thank you.

Read another story of an undetected condition, or read more of Peter Griffin's story in his book, “When you Hear the Bugle Call” (I don't get any money if you buy it), or in Steve Lawson’s article in the Reidsville Review.

Friday, January 19, 2007

The Surgery Director’s Choice: Wrong side surgery

I get paged a lot every day in my job as director of surgical services. One call I'll never forget came several years ago. There had been a serious mistake: A surgical team had operated on the patient's wrong side.

The patient was in the recovery room, just waking up. The surgeon and I had to deliver the devastating news. I cannot begin to describe our disbelief and shock, shared by everyone involved. The patient, naturally and justifiably, was very angry.

Our team's sense of guilt and grief over this extremely rare event was overwhelming. The surgeon was a good one, the team supporting him, highly accomplished. But there was no escaping the consequences. New in my job, I prepared to resign. I went to my boss and told her that despite all my years as a surgical nurse, I hadn't truly recognized the extent of responsibility in this job. This case had shattered my confidence.

Fortunately, she sat me down for a long talk about the case. I had a choice: either quit, or use this terrible experience to make a difference.

In part because I had told the patient I would do everything I could to make sure this never happened again, I decided to stay. I also started researching data on preventing serious medical errors. We joined in a collaborative effort: Safest in America, which has both significantly changed the delivery of care in Minnesota, and the statewide reporting of errors. The surgeon marks the site, and three additional people sign off on the location BEFORE you arrive in the operating room. Once there, a final check, or "time-out," takes place before the procedure begins.

This protocol is but one small example. But I think that my colleagues and I are making good on the promise I made to that unfortunate patient years ago: We are doing all we can to make sure it doesn't happen again.

Advice to patients: Write “correct” and “wrong side” on your parts before surgery. Only write “correct” on the parts you want to keep.

Read Dana Langness’ full story, or learn more about the Safest in America collaboration.

Thursday, January 18, 2007

How He Saved his Manhood: Unnecessary surgery

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact.

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

Shock Number Two came six days after that scan, when I went for an appointment at the hospital's urology department.

The Registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion." They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the Internet.

But the Registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, " I think I'd be angry."

This didn't register with the Registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But he promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" -- a consulting physician -- maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consulting physician called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that it was possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

I had the operation. The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consulting physician was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the doctors' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

I thought I knew better - and, thankfully, this time I did.

Nigel’s Advice:

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the Internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.

Read the fuller story.

Wednesday, January 17, 2007

Handwriting on the Wall, continued: A medication error

Reader Kate Gladstone comments on Armando's Castellanos' story:

Among the hospitals that call me in to prevent medication errors (by
giving handwriting classes to the doctors), a fairly high percentage
claim to have "computerized everything" 1 or 2 or 5 or more years ago
… yet they still have handwriting problems, because of a crucial 1% to
5% of handwritten documentation that just won't go away.

Doctors in "totally computerized" hospitals still scribble Post-Its to
slap onto the walls of the nurse's station, still scrawl notes on the
cuffs of their scrubs during impromptu elevator/corridor conferences
with colleagues … and, most of all, doctors with computer systems
often have the ward clerks operate the computers, use the Net, or
whatever: working, of course, from the doctors' illegible handwriting.
Bad doctor handwriting, incorrectly deciphered by ward clerks using
the computer for any purpose, thereby enters the computerized medical

And what happens when disasters like Hurricane Katrina (or tsunamis)
knock out a hospital's network? More than one hospital, during
Katrina, lost its generator, its electric power — and therefore its
computer system — for the duration. Even the computer-savviest staff
in these disaster zones had to return to handwriting. Let's hope they
wrote legibly.

Yours for better letters, Kate Gladstone -

handwritingrepair@gmail.com - telephone 518/482-6763
Handwriting Repair and the World Handwriting Contest
325 South Manning Boulevard
Albany, New York 12208-1731 USA

Tuesday, January 16, 2007

Fidel Castro: A surgical error

Famous people suffer from medical errors, along with the rest of us. Fidel Castro, the leader of Cuba since 1956, had developed infected pouches in his large intestine (“diverticulitis”). That later led to a very serious inflammation of his stomach lining (“peritonitis”).

His doctors have recently performed a series of failed operations. An infection developed from the first one. A colostomy also failed. In a third operation, surgeons implanted a Korean prosthesis, which failed. One complication--stitches that did not heal properly—required seven trips to the operating room in a single day in December.

The head surgeon at the hospital in Madrid. Spain explained that Castro, now 80 years old, does not have cancer or a malign inflammation, but rather has “a benign process in which he has had a series of complications.“

Read about the medical experiences of William Rehnquist or Ed Bradley, or read more about this in Marc Lacey's article, “Castro Impaired by Three Surgeries, Paper Reports,” New York Times, Jan. 16, page A4.

Monday, January 15, 2007

Empowerment Lemonade: A lab error and misdiagnosis

(Trisha Torrey is a 50+ year-old former teacher, turned self-employed marketing consultant and now patient consumerism advocate, who enjoys her family, golf, travel and a host of other activities.) Her story:

"In late June 2004, I found a golf-ball sized lump on my torso. It didn’t hurt — it was just there.

So I contacted my family doctor, went to see him the next day, and because he had no idea what it was, he sent me to a surgeon who removed it that afternoon. “We’ll let you know when we hear back from the lab,” was the surgeon’s departing comment as I pulled my shirt back on and got ready to go home.

A week later — no word — so I contacted the surgeon’s office and was told they didn’t have the results back yet. The 4th of July holiday had caused the delay …. so I waited.

Another week later, the surgeon finally called me with my lab results. “You have a very rare cancer — a lymphoma — called Subcutaneous Panniculitis-like T-Cell Lymphoma,” he told me.

And then he dropped a second bomb. I was told that the reason the lab results took so long was because the outcome was so rare, that a second lab had been called for a second opinion. “Two labs have independently confirmed these results,” I was told. “We’ll make an oncology appointment for you as soon as possible.”

“As soon as possible” took more than two weeks. I was so scared! In the meantime, as anyone does these days, I looked all over the internet for information about Subcuteneous Panniculitis-like T-Cell Lymphoma (SPTCL.) It was hard to find anything at all because, as the surgeon had told me, it’s very rare.

What I did learn was that everyone died. And died fast. The longest anyone with SPTCL seemed to live was a couple of years, regardless of whether they received any treatment. And here I was with that disease — and scared to death.

When I finally saw the oncologist, he was very discouraging. Dr. S, I’ll call him, sent me for blood work and a CT scan, both of which came back negative for any abnormalities. No sign of lymphoma. And I had no symptoms to speak of — at least in my estimation. OK, so I had night sweats and hot flashes, but hey! I was a 52 year old woman! Don’t we all? But Dr. S insisted that those were symptoms of lymphoma and I needed to think about chemotherapy — and soon.

Without chemo, he told me, I would be dead before Christmas.

I asked about the possibility that the lab results were wrong. No — not a chance. Two labs had independently confirmed the results, I was told, and the pressure began to mount to begin chemotherapy.

Besides my family and a few close friends, I didn’t share the news with anyone else. My business was already suffering — being self-employed and having lousy health insurance meant that my diagnosis had now become expensive, too. I was spending way too much time researching and fretting and paying for doctor visits and tests that were only marginally covered by my insurance. Life, what was left of it, was going down the tubes, fast.

By then it was August, and I had a decision to make. Chemo? or no chemo? I learned that Dr. S had taken sick, and his partner Dr. H. was taking over my case. Dr. H asked me why I was waiting to begin chemo, and I told him I was trying to find another oncologist for a second opinion. There were too many question marks. His reply to me makes me shudder to this day, “What you have is so rare, no one will know anymore about it than I do!”

If anything compelled me to begin digging deeper, that was it. Now I was “sick” AND angry!

A few days later, I had dinner with some business friends, none of whom knew anything about my diagnosis. A few glasses of wine loosened my lips — I shared my diagnosis with them and of course, they were floored. But one friend, Barb, was more than floored. She contacted an oncologist friend of hers and called me the next day to tell me her friend, Dr. K, was currently treating someone with SPTCL and would see me if I wanted to make an appointment!

That small tidbit of good news lit a fire under me. I made an appointment with Dr. K to see him a week later, and contacted Dr. S, the oncologist, for copies of my records to take with me. The records were faxed to me — and I began to study them to see what I could google for more information.

If I had to pinpoint an exact moment when this patient advocacy mission began, that moment would be it.

The lab results were NOT as advertised. In fact, neither diagnosis was for SPTCL, exactly. One of them said “most suspicious for,” and the other said, “most consistent with.” Neither one of them was sure! And yet another clue to this mysterious malady which was so far unsupported, was found.

Further, the second lab report stated that the lump biopsy was being sent for still another test for “clonality” — and no results of that test had been included in the records faxed to me. Hmmm…. what was clonality, and where were those results? I contacted the oncologist’s office and lo and behold — they didn’t know where that test result was. So, while they scrambled to find it, I looked up the word “clonality.”

Clonality, it turns out, describes whether cells are cloning themselves — multiplying. And their tendency to do so makes all the difference in a cancer diagnosis. Benign cells don’t usually multiply — cancerous cells do.

They finally produced a copy of the clonality results — And my cells weren’t cloning themselves.

As I waited to see Dr. K, I began looking over every single word on all the lab results. I looked up various stains (remember gentian violet from high school biology?) and results, and greek letters and medical terms. In tandem with the clonality results, it became very clear to me that I did not have cancer, no matter what those labs and oncologists thought.

By the time I saw Dr. K, I was empowered, and fired up. I was quite sure of my results, and shared with him everything I had. He examined me, and pulled a few books off his shelves, and helped me learn even more. From learning that SPTCL had fewer than 100 cases reported in the previous decade (!) to being told that even if I did have SPTCL, it would be better treated with radiation than chemo, I was feeling even better by the minute.

Then Dr. K recommended my biopsy could be sent to a specialist at the National Institutes of Health, part of the US government, for review. Three weeks later, in late September, I was given the confirmation that, in fact, I had no cancer. The alternate diagnosis was for panniculitis. The jury is still out on whether that is accurate since I’ve never had symptoms, nor treatment, since then.

Relief? Certainly. But my first reaction was more like anger. At the end, I accused Dr. H of insisting I begin chemo because it was the only way he could make money from me. I stand by my accusal. I also fault both him and Dr. S for never following up on the clonality test which was so pivotal in getting the right diagnosis. And the labs — did they not realize that they were, in effect, sentencing me to death?

Afterall, had I undergone chemo, and survived, they would have told me I had been cured of a disease I never had. And just as frightening, I found cases online of people who had been diagnosed and chemo treated for SPTCL who had died during the treatment — and autopsies had shown they never had SPTCL to begin with. Lawsuits had been won.

Lest you think I harbor only ill-will, I do appreciate the doctors who did what they should do. My family doctor, the surgeon, and most especially Dr. K who was willing to partner with me — they were very helpful.

To this day, I don’t believe those doctors who were involved in the misdiagnosis aspects of my treatment understand the long-term ramifications of a misdiagnosis. Being told you will die, when you won’t, is cruel. I suffered, and so did my loved ones. To this day, I react with some sort of post-traumatic distress (three melt-downs so far) when I see certain movies, or read or watch something related to someone who has died from cancer, especially around Christmas. There but for the grace of God….

In the end, one of the lab pathologists told me that he was taught in med school that he should expect there would be errors, and that he would rather err on the side of making sure someone got treatment they didn’t need, rather than not getting life-saving treatment. Ok. I’ll buy that. But it still doesn’t make it better.

I’m a spiritual person. I believe everything happens for a reason. And so I am here today advocating for others — an outcome from a horrible experience that can result in good for others. I sold my marketing company in Fall 2006 to begin helping patients full time. I built a website full of tools.

I’m doing my best to turn those misdiagnosis lemons into empowerment lemonade."

Sunday, January 14, 2007

When you’re taking more than one drug: Drug-drug interaction

Since his son had the flu, a friend of ours went to the local pharmacy to get a decongestant. The father asked the pharmacist’s advice on what to take. The pharmacist alertly asked what other drugs the boy was taking. When told he was on Adderall XR (for kids with Attention Deficit Disorder—ADHD), the pharmacist recommended against a certain common decongestant because of the interactions. The pharmacist recommended an alternative. There was no error in this case, because of the pharmacist’s alert question. (Thanks, CVS!)

Often, however, a pharmacist or prescribing doctor will not ask about the other drugs a patient is taking. Sometimes one drug will interact with another one in surprising and harmful ways. In the case of Saleem, it was fatal.

Advice to people taking more than one drug: Look up the possible interactions the new drug may have with other drugs, or with foods, here. Or scroll down on this blog to the Resources and Links section, on the right margin, below “About our Blogger in Chief.”

Tell your friends about this.

Saturday, January 13, 2007

The Machine was the Perp, Part 2: A drug dispensing error

I described what happened after nurses opened the drug drawer of a mis-stocked automated dispensing machine and gave adult doses of Heparin to three newborns.

That hospital unit usually only received doses of Heparin for newborns, and the vials of adult and baby doses are of similar size and color. If the hospital had consistently used vials of a distinct size or color for babies or youths, the errors would have been far less likely. The pharmacy technician would not have stocked the drug wrongly, and the nurses would not have given it to the babies.

Safeguards like this distinctive repackaging are a form of error-proofing ("pokayoke," in Japanese)--an effort to make errors impossible, or at least highly unlikely. Of course, such distinctive packaging costs hospitals time and money. Since the powerful blood-thinner Heparin is known as a hazardous medication, it's probably money well-spent.

Advice to patients and advocates: Be especially vigilant when hazardous medications are being given.

Advice to pharmacy directors: Repackage hazardous medications to consistently distinguish adult from infant doses with distinctive colors or vial sizes.

Read Nurse Mary Bylone's blog posting for more.

Friday, January 12, 2007

His Handwriting Could Be on our Wall: Overdose lawsuit

On Wednesday I described the chemo overdose that took the life of Armando Castellanos. Two features of his story are especially troubling: His family wasn’t told of the error. And his story is almost untold.

In the days following Castellanos’ death, the medical center was knocked not just for the medical error but also not alerting his next of kin about the Cisplatin overdose on Aug. 12 until just before he died. Medical personnel reportedly discovered the mistake — 500 mg instead of 50 mg — but stayed mum while Castellanos’ health declined. In the end, his family was informed of the dosage before they removed him from life support. The hospital did not inform the Coroner about the overdose, though the law requires the Coroner to investigate all questionable deaths in the county.

Second, Armando’s story has been reported only in his hometown newspaper. We need to tell his story more widely, to give each victim a name, to honor him, and learn from this error to protect ourselves. The Japanese quality improvement experts say, Every defect is a treasure. We say, Amen, and each person is a treasure. If we don’t learn from his story, we’ll be condemned to repeat his experience….

Advice: Get an advocate who can help you know if an error is occurring, and help you handle it.

Tell his story.

Read Michelle Durand’s newspaper story.

Thursday, January 11, 2007

Dis-Infecting Hospitals: A Role for Citizens

State Senator Richard T. Moore, the chairman of the Massachusetts legislature’ Health Care Financing Committee, filed legislation yesterday that eventually would require health officials to make public the infection rates for individual hospitals. State health officials said public disclosure probably would be part of any new reporting requirements placed on hospitals. Sen. Moore said public reporting will give hospitals added incentive to improve their infection rates.

Hospitals can indeed greatly cut their infection rates. Last month, Beth Israel Deaconess Medical Center president Paul Levy posted his hospital's rates for central line-related infections, in part to spur other hospitals to be more transparent about their quality of care. Bacteria on the tubing can flow quickly through the bloodstream and to major organs, making these infections of particular concern. BIDMC staff have cut the central line infection rate in half from its rate of 3 central line infections per 1,000 patient days a year and a half ago.

Advice: Tell your friends in Massachusetts to support this bill.

Read a patient's story, or read more on this from Liz Kowalczyk's article in today's Boston Globe.

Wednesday, January 10, 2007

Handwriting: A chemo overdose lawsuit

The trouble began with a doctor’s illegible handwriting, continued with clarification of the order not being recorded and a pharmacist misreading the medicine dose on the prescription, according to the report by the expert investigators at the Institute for Safe Medication Practices. Armando Castellanos’ doctor had written a prescription for 50 milligrams of Cisplatin as part of Armando’s chemotherapy. But he received 10 times that dose, causing his death several days later. The family of the middle-aged Californian man received a settlement from the medical center.

Advice: Read the doctor’s handwriting on your prescription when you get it, and ask the doctor to rewrite clearly anything you can’t read.

Read another overdose story, or read more in Michelle Durand's newspaper article last month.

Warn your friends and family.

Tuesday, January 9, 2007

“Just a little sunbeam, very sweet”: Flu vaccine

Nichole Lang-Veru, a fourth-grader at Dale Mabry Elementary School in Tampa, Florida, died Dec. 27 after she became ill. An autopsy confirmed her death was flu-related, the Medical Examiner said. Doctors said Lang-Veru's death should serve as a warning to parents because the girl seemed to be healthy. "She was somewhat shy, very quiet, very respectful," said an adult classroom volunteer. "Just a little sunbeam, very sweet."

This isn’t a story about medical error, but since I have a daughter, it strikes close to home.

Advice to parents: Get your family vaccinated to protect them from the flu—it’s not too late.

Read another story of how parents can prevent tragedies, or read the newspaper story about Nichole by Abbie VanSickle or the story in Florida Today.

Monday, January 8, 2007

This IS a happy new year!: Access to healthcare

More than 40 million Americans lack health insurance, and so get little preventive medical care. Massachusetts has begun an exciting new program to cover the uninsured. The program, after only three months, already has enrolled 29,000 uninsured Massachusetts residents who earn less than the federal poverty level. Read more about the coming health care for all coverage in Massachusetts.

Congratulations to Jon Kingsdale, the head of the Connector Board that runs the new programs, and John McDonough, one of the key members of the broad coalition that vigorously promoted the new state law!

Advice to Massachusetts residents: Forward this message to someone who may lack health insurance.

Sunday, January 7, 2007

How Could Billy Have Known?: A surgical error lawsuit

In November 1999, Billy Karl Boone had an ear infection and white, pus-like drainage in his left ear. His primary care doctor referred him to an ear, nose and throat surgeon, who determined that his life was in danger because of a rare condition in which skin cells proliferate and debris collects within the middle ear, usually as a result of a long-term middle-ear infection (a cholesteatomoa). The surgeon suggested surgery—a revisionary masteoidectomy--to be done at his own outpatient surgical center. The next day, Billy started having difficulty reading, remembering names, and recalling words. An MRI scan and a CT scan of his brain revealed heavy internal bleeding, and an apparent opening in his skull at the site. The surgery had punctured a hole in his brain, causing serious and permanent brain damage.

Billy won a jury verdict of almost $1 million. The final appeals, concerning informed consent, were decided last month. The surgeon had not informed him beforehand that he had only performed one such operation in the last three years. Billy didn't ask, and the surgeon didn't tell.

Advice to patients and advocates: If you need surgery, find a surgeon who has extensive recent experience in performing that operation.

Read about another surgical error story. Or read the final court opinion, or the Maryland malpractice lawyer's blog.

Saturday, January 6, 2007

Our Hero: She Didn't Sue, Part 2: A drug error

Yesterday I described John Eric Kauffman's experience in taking Zyprexa. His mother, Millie Beik, is educating others about the dangers of Zyprexa, in the front-page article in the New York Times. By telling her story, she warns, teaches, and empowers others.

She performed another unusual and vital step: she asked for an autopsy. The doctor who performed it discovered that her son had died from an irregular heartbeat, which the autopsy report said had probably been caused by an enlarged heart caused by his high blood pressure. His high blood pressure had begun during his years on Zyprexa, when he had gained 100 pounds.

Autopsies are rarely performed nowadays, though doctors acknowledge that they provide critical and unique knowledge. They help doctors learn so they will not repeat the same mistakes. Personally, I greatly regret that we did not conduct an autopsy of a family member who almost certainly died from a surgical error.

Advice to family members and friends: If you suspect a death is due to a medical error, gently ask the surviving relative whether they would consider an autopsy, in the interest of saving someone else's life. If they say Yes, help make it happen.

Friday, January 5, 2007

She Didn't Sue: A medication error

His prom photo showed he was a handsome teenager with a messy mop of dark brown hair. He went to college to study political science. But within the next year or two John Eric Kauffman developed mental illness--a severe form of bipolar disorder. In 1992, in his late twenties, he suffered his most severe psychotic breakdown. Over the next 8 years, he didn't suffer any psychotic breakdowns, thanks to lithium and Stelazine. After that, a psychiatrist changed his medications, John stopped taking them, his condition worsened, and he was hospitalized. In the hospital he was given Zyprexa in a relatively high dose. He then remained on Zyprexa for 6 years, and gained 100 pounds, developing heart disease. John's weight gain probably contributed to her son's death in his forties from an irregular heart beat, according to a forensic pathologist.

Such weight gain was not unusual for Zyprexa patients; the drug maker's internal records show one out of six patients gain more than 66 pounds! The drug maker, Eli Lilly, which received $4 billion in Zyprexa sales last year, had long played down data on these side effects.

Lilly has agreed to pay more than $1 billion in settlements to patients. But John's mother is not suing Lilly. She simply wants her son's case to be known as a cautionary story about Zyprexa's tendency to cause weight gain. "I don't think that price should be paid," she said. She added that the company should have been more honest with doctors, as well as the milions of people who take Zyprexa.

Advice for family members: If a member of your family is taking Zyprexa but is not acutely psychotic, discuss the side effects with their doctor. Some leading psychiatrists say that you and your doctor might consider other drugs for long-term treatment.

Source: New York Times articles by Alex Berenson, January 4 & 5: "Mother Wonders if Psychosis Drug Helped Kill Son," and "Lilly Settles with 18,000 over Zyprexa."

Thursday, January 4, 2007

He Was Judge, Victim, and Addict: An adverse drug reaction

This story may seem too wild to be true, but was based on physicians’ testimony and records, as reported by NPR, Fox News, and others.

Unexpected harmful reactions to drugs (“adverse drug reactions”) can sometimes land a person in the hospital. Sometimes the damage is self-inflicted.

For 10 years or more, William Rehnquist, the former Chief Justice of the U.S. Supreme Court, had been taking Placidyl. Placidyl is usually prescribed for insomnia; others describe it as a prescription pain-killer. Known as a habit-forming drug, it is recommended for no more than nightly use, usually for no more than a week. Rehnquist had been taking two to three times the prescribed dose, for many years. Apparently this was deliberate; he may have consistently filled a three-month prescription each month. The prescribed dose itself was nearly toxic, so much so that an investigating physician considered the prescribing physician’s behavior to be “borderline malpractice.” One reason: overdoses of Placidyl can create severe drowsiness, continuing confusion, and slurred speech, among other symptoms. Rehnquist was admitted to a hospital, claiming stress and anxiety. The doctor’s diagnosis was delirium, brought on by the overdosing. Rehnquist hallucinated that he was hearing others plotting against him, including the CIA. A doctor reported that he tried to flee the hospital in his pajamas. During his week-long hospital stay, doctors gradually reduced his drug level, and substituted an anti-psychotic drug.

Tough advice for spouses: If you are worried that your spouse is abusing a medicine that may be addictive, look at the dates and the prescribing doctors on the drug labels. You may need to have a difficult conversation with the pharmacist, psychiatrist, doctor, or your spouse.

Read another story of a famous person’s medical error or hear Nina Totenberg’s report on National Public Radio.

Wednesday, January 3, 2007

Saved by Lady Luck: Wrong patient

"I actually went to the wrong patient,” the nurse testified. “All I did on that afternoon was to flush her drugs line. After flushing her line with saline [solution] I realized I was in the wrong room with the medication. Honestly, I didn't give her any of the drug." The patient was allergic to penicillin—which can be fatal to some patients. Luckily, the nurse stopped before administering the drug. She was reinstated to her job. As the head of the Nursing and Midwifery Council panel explained, "Whilst the allegations are serious, they relate to a single incident and we consider the risk of repetition is minimal." While this nurse will probably never forget or repeat the near-miss, others will.

Advice to patients and advocates: If you have a severe drug allergy, label a cheap plastic bracelet “ALLERGY!” and wear it in the hospital. Don’t worry if the color clashes with your hospital johnny [gown]….

Read more of the Cambridge Evening News article.

Tuesday, January 2, 2007

Her Only Kidney: A drug error lawsuit

Tiffany Phillips had been born with only one kidney. She had a kidney transplant, and was discharged from the hospital to her home in South Carolina. The hospital’s doctors hoped the prescription they wrote for prednisone would keep her body from rejecting her new kidney. The medicine was not in stock at the Eckerd pharmacy, so the pharmacist there called a pharmacist at CVS. The pharmacist saw an alert on the CVS computer, but overrode the alert, and filled the prescription. Unfortunately, the pharmacist had dispensed the prednisone in 1,250 milligram doses rather than 250 mg doses, and the young woman took a five-fold overdose.

She was soon hospitalized and again is needing a new kidney, her lawyer said. Unfortunately, the mistake has left her with few alternatives. After taking too much of the steroid, she is unable to use dialysis. And she cannot have another kidney transplant. The error has reduced her life expectancy. The judge and jury considered that in awarding her an $8 million judgement against the pharmacy. The jury found the pharmacies 90% responsible. They found Tiffany 10% responsible because she had not noticed the correct dosage on her hospital discharge papers.

Advice to pharmacies: Require pharmacists to document their reason for an override of a computer alert, to discourage overrides. Require the approval of a second pharmacist to override computer alerts for medications for fragile patients, e.g., those who have just received organ transplants.

Advice to patients and advocates: Carefully verify the medicine label against the hospital discharge prescription.

Read another story of a drug error lawsuit, or read more about this one in Taylor Bright's newspaper story.

Monday, January 1, 2007

In Her Second Trimester: Medical device and overdose lawsuit

Sylvia Lane was 17 weeks pregnant. Diabetic, she lay in her bed in her Lynnwood, Washington apartment, comatose and alone, her blood and brain in desperate need of sugar. But the medical device she'd just received instead kept pumping insulin into her body, starving her brain. Her husband was on an aircraft carrier, halfway round the world. The small pump had a safety feature designed to stop the insulin flow in emergencies like this. But the feature had never been turned on. The pump had been shipped to her with the option turned off, and she hadn't known about the "auto-off" safety feature. She suffered severe and permanent brain damage. And her doctors determined that her growing fetus had suffered irreparable harm; she was not able to have the baby. Her family sued Medtronic Inc. — the parent company of the pump's manufacturer — claiming the pump was unsafe. Her family reached a settlement with Medtronic whose details have only now come to light. This riveting story is reported by Ken Armstrong and Justin Mayo.

Advice to patients: Before you use any pump, make sure you know what safeguards in the pump's design might prevent an overdose.

For another story of multiple errors caused by a machine, see The Machine Was the Perp.