Archive for the 'Guerrilla Patient' Category
December 9th, 2008 by Trisha Torrey
Seven out of ten of the people who read this post will nod their heads in understanding.
You’re sick, or you hurt. You need to see your primary care doctor as soon as possible. You call to make an appointment, in hopes you’ll be seen within the next few hours — but NO. Not gonna happen. You can’t get an appointment for another few days.
Sounds familiar?
First — an explanation. Yes, it’s definitely more difficult to get an appointment for primary care these days. The last statistic I heard was that there are 14,000 too few primary care practitioners in the United States, and that number is growing:
- Baby boomers, as they age, need to visit their primaries more often, leaving fewer appointment slots for others.
- Practitioners who are of baby boomer age are retiring, leaving empty primary care practices behind.
- Primary care doctors make less many than any other specialty – therefore, fewer medical students are choosing primary care as their specialty.
So what are we supposed to do about it?
CNN’s Empowered Patient columnist, Elizabeth Cohen, brings us some great ideas for getting around this primary care dilemma. In particular, check out her #5 suggestion of “go a little crazy” — have you ever tried those kinds of tactics?
October 31st, 2008 by Trisha Torrey
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.
September 23rd, 2008 by Trisha Torrey
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:
- Learn about the concept of differential diagnosis — and keep asking questions.
- 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?
September 18th, 2008 by Trisha Torrey
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. )
