For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened.  Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or try to avoid me.  Instead, he explained to me how the mistake was made.  He even apologized.  There was some relief in that, even though it didn’t change the outcome.

Fast forward four years.  Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root.  It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths.  What Dr. H wanted me to know was that procedures and policies have been changed.  In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.

And people might still be getting misdiagnosed.

For this woman who has fought on behalf of patients for four years…. that was a melt-down point.  All good.  Dr. H. showed me how the processes have changed.  It’s a way of handling paperwork and the eventual reports that are issued.  It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.

The tour lasted about an hour.  I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again….  I asked only one thing.  This, from my follow up email to Dr. H - and I’m quoting:

I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens.  I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment.  I understood it even then.  It makes sense.  And I agree that it’s probably best for the majority of patients.

But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost.  As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples.  I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis:  I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives.  Each one of those samples represent life, death, debilitation, illness – short term or long term.  If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three.  The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature.  Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.

I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results.  I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be.  Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do.  How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation.  I imagine some are as simple as strep throat or some other fairly ordinary malady.  Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.

There was more, of course…. but that’s the gist.

Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.

It was a pivotal moment in my career and my life.

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Like so many of you, my heart breaks at the loss of Tim Russert. On so many levels, we felt a kinship to him. Anyone who has tried to understand American politics or politicians during the past 20 years has gotten to know Tim Russert, as if he were the trusted friend and neighbor who could help us “get” it.

Our world is now less because we don’t have Tim. And It occurs to me that there are some final lessons we can learn about healthcare from him. Just as he helped us understand politics, he can help us better understand healthcare and a healthy life — as follows:

It turns out that Tim was quite watchful over his heart disease. He had been diagnosed, and was under a doctor’s care. He took his meds, he watched his diet, he exercised, and he got his regular check ups. He was a vigilant patient. Our lesson: being a vigilant patient, doing our best to prevent problems, following all the rules for good health, doesn’t mean life won’t still be too short.

We’ve learned that no matter how many studies exist, no matter what tests can be run, no matter what drugs are available, no matter how well we manage our diets and exercise, there are aspects of a body’s function that just can’t be controlled. Our lesson: Medical science still has a very long way to go.

We’ve learned that good quality medical care doesn’t always translate to a longer healthier life. Yes, I think that over a population of people, better care equals a longer life — BUT — Tim had the best care available in this country, and he died way too young, in his prime. Perhaps without that good care, he would have died even younger? We’ll never know… Our lesson: having good medical care is a plus, but it’s only one tool in determining longevity.

We’ve learned that even the best medical care can’t make up for 1) bad genes or 2) bad choices or 3) extreme stress — any or all. What we don’t know is whether Tim was a smoker when he was younger, or whether he survived on hamburgers and greasy pizza before he turned 55. We don’t know if there was heart disease in his family. We can assume his life was quite stressful. Our lesson: we can’t expect medical miracles to overcome bad genes, heavy stress or bad choices.

Tim taught us that we just never know when our final moment will be — and we need to be prepared. His family was the most important part of his life. He left this world making sure they knew exactly how much he loved them — his dad, his wife and his son. Our lesson: At any moment in life, be sure those you love know just how much you love them. It’s important for your own health, and their health and well-being, too.

Tim had very strong spiritual beliefs, and surrounded himself with spiritual people. In the difficult times, believing in a higher being can be very comforting. His family will find some comfort in the coming years based on that faith, too. Our lesson: Life can be enhanced, health can be supported, and comfort can be found through spiritual beliefs.

Finally, we’ve learned from Tim that one’s legacy is about character and a zestful approach to life. We have to believe that in that instant the heart attack struck, when his life passed before him, he knew it was all good, and he would not have changed one moment of who he was, who he loved, what he had accomplished, and the experiences he had enjoyed. Our lesson: live life to its fullest, with spirit, grace, and zest.

My prayers are with his family — His dad Big Russ, his wife Maureen, his son Luke, and his co-workers at NBC. We were all lucky to have him while we did. And we can all thank him for these final lessons about living a quality — and healthy — life.

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A few weeks ago, the FDA refused Merck Pharmaceuticals permission to sell a newly developed drug called MK-0524A  that combines niacin and a cholesterol drug . Today we learn that Merck has now stopped trials of the drug.

As you know if you read this blog or my other blogs regularly, Merck has been caught with its pants down twice in the past years — first with Vioxx, a pain-reducing drug that the FDA approved, not knowing that Merck had already learned that patients with pre-existing heart problems were dying after taking it. Merck is now paying out billions of dollars to the families of those who died, or people who got sicker from taking Vioxx.

Then earlier this year, Merck, in cohoots with Shering Plough’s eager marketers, finally released study results that showed Vytorin — a very EXPENSIVE cholesterol reducing drug — didn’t work the way they anticipated, and no better than far less expensive cholesterol reducing drugs. At least Vytorin (so far) isn’t considered dangerous. It just doesn’t work like it should.

You know — once burned, twice shy. But now the FDA, and Americans who took those Merck drugs have been burned twice (that we know about!)…. I wonder if this most recent denial of approval doesn’t reflect that?

Thank heavens the FDA is finally putting its foot down and not bowing to the big bucks of big pharma.

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Over the years, I’ve had conversations with a handful of health conspiracy theorists. They claim there is a cure for the common cold, but the makers of symptom relief medicines block that cure from making it to the marketplace. OR, they claim certain cancers can be cured, but the cures have been developed by the companies that manufacture the machines and drugs that keep it at bay, and more money can be made over time by keeping someone partially sick instead.

I have no idea who is right or who is wrong. I do believe that these kinds of coverups take place. I’ve read about them and written about them. And I had my own experience with an oncologist who wanted to make money from putting me through chemo when I didn’t really need it.

Several months ago, I blogged about a treatment for lymphoma patients that is kept secret by most oncologists. Since it can only be offered at academic medical centers, meaning most oncologists can’t profit by it, they don’t tell their patients about the treatment which could save their lives. Instead they offer an inferior treatment option that provides profits to them, but doesn’t do as much for the patient as the unmentioned drug administered at another center.

The big problem, of course, is that there are charlatans across the globe claiming to have developed treatments for any malady large or small. Patients diagnosed with a lifelong or life threatening disease or condition seek any small piece of hope, and spend money and waste their time to pursue that hope, only to have their hopes dashed. It’s a sad fact of medicine. And it becomes difficult to weed out who is being truthful.

A few days ago, I was contacted by a physician scientist who asked me to alert you about a cure for kidney disease if it’s caught in the early stages. Now — I’m not a health professional, so I’m very VERY reluctant to showcase these kinds of things, or to comment on them. But I did ask for an explanation of how it works, and it turns out that it is a treatment that is based on genetic code.

It’s based on the concept of personalized medicine. In this case, the genes responsible for kidney disease are reviewed, and, according to David Moskowitz from Genomed, the company that has applied for a patent for this treatment, if the patient is in the earliest stage of kidney disease, then it can be reversed. That’s been documented with more than 1,000 patients, published in a peer-reviewed journal, and the basics are available at PubMed.

Reversed? Good grief — that means cured, doesn’t it? So if that’s true, then why don’t we hear about it in the mainstream press?

The answer, for those who buy in to conspiracy theories, is that the info doesn’t make it to the mainstream because too many others stand to make too much money as long as patients are tied to kidney dialysis, surgeries, drugs and other profit-producing treatments.

I can’t tell you whether this approach for reversal of kidney disease works. But I can tell you that they have applied for a patent — not FDA approval, but a patent. Also, they don’t administer any treatment. Instead, they work with your doctor to help you. It does sound on the up and up, doesn’t it?

So if you are in the early stages of kidney disease, or if you are at risk because others in your family have suffered from kidney disease, you might want to take a look. The same holds true for people with COPD or high blood pressure. They’re developing life saving treatments for those diseases, too.

Conspiracy theories? Just because we’re all paranoid doesn’t mean they aren’t out to make money from us.

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