De-cancered — a good word, isn’t it?  Look at these two faces — they look quite healthy, don’t you think?

Well — they most certainly are — quite healthy, despite the chemo both faced prior to proving neither one had the cancer she was diagnosed with.

What this photo doesn’t show, is the emotion behind it.  In fact, I have trouble looking at our smiling faces without choking up. That’s Heather on the right — the young woman who contacted me last June to tell me she had been diagnosed with the same rare lymphoma I had been misdiagnosed with.  We proved the professionals were wrong — Heather had no cancer at all.

And that’s me on the left — I was just so happy to meet my very healthy friend Heather and see for myself, in person, that she’s doing so well!

We met for the first time last week in Las Vegas, not far from where Heather lives, and actually quite far from my home in NY.  I was there to attend an About.com conference – but we made time to see each other.  And it was the very best “event” that took place during the entire visit to Nevada.

My hope for you is that you, too, will take the time to learn everything you can about a diagnosis you’ve been handed — it may be correct, or it may not.  I promise you that if either Heather OR I (or Daniel, who was also misdiagnosed this summer) had believed the professionals, despite our intuition and proof to the contrary, we would not have been able to meet each other, we would not be healthy today — and we would not be here trying to inspire you to better and more successful medical outcomes.

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When I received my cancer diagnosis in 2004, and proved I didn’t really have cancer at all, it was the first time I had ever heard or known about that form of misdiagnosis.

It’s backwards from those we hear about more frequently.  Most of the time we hear about a “missed diagnosis” — meaning someone has a disease or condition and it is not diagnosed — and then does not get treated.  In the case of a cancer, of course, no treatment may mean the difference between life and death.

This summer we were able to prove that two other people, Heather and Daniel, had been diagnosed with cancers they did not have, almost identical to my own misdiagnosis.  In our cases, we were told we had something we didn’t.  Missed — yes — but backwards from the more usual case described above.

And it seems another person has suffered this fate as well — as written about in today’s Post-Tribune (from northwest Indiana — not far from Chicago) — a gentleman named Albert Velasquez Jr. was diagnosed in 2003 with lung cancer.  He did exactly what he was supposed to do — went for a second opinion — and the second lab also told him he had lung cancer….

Except that he didn’t have it.

As near as I can tell, he never received treatment for it either.  About three months passed between his first tests and the ultimate discovery of his misdiagnosis…. and if you substitute his name and type of cancer for mine, we could be telling the same story, except for two distinct points:

1.  That his misdiagnosis was a result of switching lab specimens. This happens WAY too frequently.  Lab techs are in a big hurry and swap one person’s samples and name with another.  I suppose they catch themselves when something like this happens (or if a woman is told she has prostate cancer?) — but studies tell us it happens daily.  About 1% of them lead to dangerous treatment mistakes, according to a pathologist at the University of Pittsburgh. But he also pointed out that “you wouldn’t want to have 1% of airplanes crashing.”

2.  Albert Velasquez has filed a lawsuit. I did not.

His suit is asking for damages to cover the extra costs needed from the misdiagnosis, and proof that the right person was eventually informed of his misdiagnosis.

So what can we patients do with this information?

I hope it will show you that when mistakes are made, it becomes incumbent upon us — the patients who pay for the mistakes — to figure out the real truth.  We need to trust our intuition, pull out all the stops, and keep following the evidence to prove — or disprove — our diagnosis.

Here are some tools:

1. Learn about the concept of differential diagnosis — and keep asking questions.
2. Make sure you get at least one second opinion (even a third, if necessary, just like Mr. Velasquez did).

If you have been diagnosed with cancer, then yes, there is a better chance you do have it than don’t.  But why on earth would you risk those horribly invasive treatments like chemotherapy or radiation if, for want of another test or opinion, you don’t have it?

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I don’t usually write about local or state news because my work is really more broad than that — however — an article in my local newspaper about a local hospital and wrong-site surgery just begged for some additional information!

Wrong site surgery — a “never event” that takes place an estimated 100 - 200 times per year in the United States. In this case, the patient was supposed to have his fractured right hip replaced with a new one. However — the patient woke up in the recovery room with — surprise! — a new LEFT hip. Yes, the surgeon had replaced the wrong hip. And of course, the right hip was still in the same fractured state it began with.

I can only imagine that this mistake took place like most of the wrong-site surgical mistakes do. In a hurry (because, never forget - time equals cost), shortcuts were taken. And who pays the price? The patient, of course. Oh yes, the hospital will now pay a $ 6,000 fine, too — more about that in a moment.

According to the article and the New York State Health Department, this is what took place:

• Instead of marking the skin on the correct hip with a skin marker, the surgeon used a ball-point pen.
• + The surgical nurse didn’t know whether or not the skin had been marked, so he or she prepped the wrong hip.
• + The nurse who transported the patient to the operating room never verified the correct side either.
• + The “time out” process, which is required by the Joint Commission (the group that accredits hospitals) was not followed. (Of course not — time OUT is expensive!) There are actually three required Time Outs: 1 - before anesthesia, 2 - before any cuts are made, and 3 - post surgery, they are expected to account for all the tools and materials used that should not be left behind in the patient.
• + The MRI films were not displayed in the OR for review prior to the surgery.

= one patient who is far worse off than when he or she was admitted to the hospital for surgery.

There’s no mention of what happens to the medical personnel who made the errors. One can only hope they are being dealt with. (And I won’t even go into the hospital policies that caused them to take short cuts to begin with. Were they running behind? Were they pressured to make up time? No excuses — but I do recognize that the pressures on these folks are outrageous, and then, as usual, we patients pay the price….) But I digress…

The hospital was fined $6000. I wondered — who gets that fine money? Where does it go? Hospitals all over New York State (and every other state, too) get fined on a regular basis. Does the money simply enhance the general budget? (Are we going to try to make up for Wall Street’s woes by fining healthcare facilities?)

So I called the New York State Health Department. After several minutes of being passed around from one department to another — I actually found someone who was very helpful! Peter Farr, from the Bureau of Hospitals, explained that until recently all that money simply got deposited into the general fund. BUT! Recent new legislation has established the Patient Safety Center, and now most of the fine money will be funding that program. The Patient Safety Center will be tasked with transparency issues — reporting all that data that we patients have not had access to, but will begin seeing (and hopefully using) in the near future.

You know, though, we patients can all learn from this wrong site surgery story:

• If you will have surgery, mark the area of your body that is to be operated on. Use a marker that won’t wash or rub off right away (like a sharpie), and mark “THIS HIP” or “CUT HERE!” or whatever works for the surgery you’re about to have.
• Then mark the area that could be mistakenly opened. “WRONG HIP” or “NO! NOT HERE!” on parts that could be cut accidentally.
• Before they give you that pre-sleep drug, and anytime you see or encounter anyone who might be in the OR, remind them to take their “Time Outs.” Don’t worry about whether someone will be in the OR or not — assume they all will, and remind them all. Ask your loved one or advocate who is with you before your surgery to do the same.

I have to think that the surgical personnel at this hospital are just as appalled as anyone else about this mistake. They will be second-guessing themselves for a very long time, and I’m sure they will be correcting themselves and being far more careful in the future.

So my advice is simply for the rest of us to learn from their errors — and perhaps to think some good thoughts for that poor patient who had two hips replaced in one day, and will hopefully recover 100 percent.

(PS — If you are the patient, why not get in touch? We’ll keep your identity anonymous, but we’d love to hear your impressions…. email blog (at) epadvocate.com. )

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Last week I spoke to a group of payers — health insurance executives, Medicare and Medicaid representatives — and shared with them the many ways in which we patients feel the American healthcare system is failing us.

The points I made came from you — my readers — from the many stories you have shared with me through email. Your frustrations, your debilitations, the loved ones you have lost… your substandard care or battles with your insurance companies…. your bankruptcies, your denials of care and more….

Of course, at first they couldn’t fathom why a “mere patient” would be addressing them at all. With one exception (Morton Kondrake, commentator from Fox News) the other speakers were all just like them — health insurers who were sharing the many tactics they were using to manage business, save money and cut costs.

I’ll give them credit for one thing — I was pleasantly surprised to hear them talking about improvement in care, what they call disease management, as one way they had attempted to keep costs lower. The idea being that if they could teach patients to manage their health problems, then those problems wouldn’t become so expensive to them. Unfortunately, what they were reporting was that disease management doesn’t seem to work for cutting costs. I don’t remember that anyone commented on whether it was improving the patients’ health….. but I digress….

So then this patient with credentials unknown (me!) steps up to the podium and explains why she had been asked to speak…. Many were uncomfortable (to their credit.) Some didn’t care. Most listened. No one asked questions. But a few did approach me afterward to thank me for being their conscience. That was a pleasant surprise, too.

I’ll share with you two of my main points. First, I explained to them that I’ve been teaching all of you — my readers — “guerrilla patienting.” I define guerrilla patienting as a way we patients can find workarounds to the system that is failing us so we can find better healthcare success for ourselves. If it sounds a little warfare-ish — well — aren’t we fighting for our lives?

And second, I suggested a dozen ways that patients, providers and payers could collaborate to find solutions to improve the system. That was my original assignment, by the way. I’ll be curious to see if any of the folks who heard me speak will come back for more ideas.

Today I have an invitation for you. Do you know of workarounds? Ways to get the healthcare help you need despite the system? Tactics you have used that you would be willing to share with others?

Soon I will begin a new page on this blog called “guerrilla patienting” that will address specific ideas and tactics. We’ll categorize them and make them known to others. If you have ideas you’d like to share, please email them to me (blog (at) epadvocate (dot) com) and I will give you the credit for the idea.

Each one teach one.  Patients — our time has come.

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