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Archive for the 'Intuition' Category

Healthy Travel Tips for the Holidays

This column first appeared
in the Syracuse Post Standard
November 22, 2011


You may be among the millions of Americans who will travel during the upcoming holidays. Travel takes you out of your normal environment and disturbs your routine. If you have health issues, like a chronic disease, an injury, or even a short-term illness, it’s smart to prepare ahead of time for those changes and accommodate for them where possible.  You’ll want to be sure your travel doesn’t upset your health, and your health doesn’t upset your travel.

Drugs, supplements and supplies:  Pack enough to cover the days you’ll be away, plus extra, in case flights are delayed or a blizzard closes the roads. If you fly, remember that airlines can lose checked bags, so keep all medical supplies with you in your carry-on bag. Any time difference at your destination may require an adjustment of your drug routine. Make yourself a chart ahead of time to keep your regimen on schedule.

Airport security:  The TSA has strict rules about what can, or cannot go through security.  Medications, oxygen, inhalers and other medical items must be packed in certain ways, and will be screened through x-ray machines. Go online before you fly to learn to learn how to get your medical equipment or materials through security.  http://1.usa.gov/TSAMedical

Foods:  Alert your host ahead of time if you have special dietary requirements, or if certain foods upset your digestion. Mention any food allergies you have or conflicts with drugs you take. Plans can be made to accommodate your needs when they are discussed ahead of time.

Contagious diseases:  Of course, holiday time is often cold and flu time, too.  Get your flu shot prior to travel. Wash or sanitize your hands as often as possible, and keep them away from your mouth, nose or eyes. If you are highly susceptible or your immune system is compromised, consider wearing a face mask to protect yourself from others who might be contagious. If you have a cold, then cough or sneeze into your elbow, not your hands, to prevent infecting others.

Long Distance Travel:  If you’ll be sitting for great lengths of time in a car or plane, you risk potentially deadly blood clots in your legs called DVT (deep vein thrombosis.). Keep your blood circulating by taking hourly breaks to walk around and stretch.

These travel preparations will keep you healthier and will make your visit more enjoyable, too.

Here are some additional resources for
making sure you stay healthy while traveling:

•  Tips for Healthy Travel
Before You Go, As You Travel, and At Your Destination

•  Tips for Healthy International Travel


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Back in Business….

When last I wrote, I’d been catching up after a whirlwind Fall travel season.  And here I find myself catching up after another crazy six weeks…

I don’t just bow out completely, even if it seems so.  I’m blogging in other places, like About.com and the AdvoConnection blog, plus I have been promoting my new marketing book, and building three new websites that haven’t even made a debut yet!

So it occurred to me that that’s what I should be doing here at the Every Patient’s Advocate blog is keeping track of all the activities that help me help you.  And so it shall be.

I think you’ll find I’ve all but stood on my head!

In these past few weeks, among other things:


My new book has come out: The Health Advocate’s Marketing Handbook. It’s written specifically for anyone who works in healthcare in a non-traditional career (anywhere from patients’ advocates to acupuncturists, from massage therapists, to counselors, case managers, navigators and more).  I’ve learned that most of these folks are marvelous practitioners, but aren’t confident about marketing themselves.

If you work in healthcare, helping others improve their health in whatever way – this book can help you – I promise!  Learn more about The Health Advocate’s Marketing Handbook.

I’ve written several new columns for the Syracuse Post Standard and Syracuse.com:

  • An Advocate by Your Side takes a look at private patient advocacy and how hiring a patient advocate can be the smartest move an empowered patient will make.
  • Be a Tattletale!  tells you how to report problems with your healthcare that don’t add up to a lawsuit.
  • Trust Your Gut to Make Medical Decisions talks about the role of intuition in your decision-making.
  • And An Open Letter to Ann Marie Buerkle, My Newly Elected (Republican/Teaparty) Congressional Representative explains why “defund and repeal” Obamacare is the wrong way to go.

Plus I’ve written untold blog posts that have sparked everything from outrage – to big yawns. Among the most inciteful (notice how that word is spelled! – it was intentional):

So you see?  I haven’t left you, my blog reader, out in the cold completely!  I just worked out of (blog)town for awhile.  I’ll be back again next week….

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. . . . . . . . . . . . . . . . .

Have You Been Diagnosed with Cancer? Are You Sure the Diagnosis is Correct?

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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Smoking and Botox — Wishful Thinking and Common Sense

The FDA came out with a report on the negatives of botox injections…

It’s like deja vu, isn’t it? Where is common sense?

Read this post at About.com, Patient Empowerment.

Isabel’s Misdiagnosis May Save YOUR Life

Jason Maude wants to save your life.

He lives in the UK where healthcare is a given, like a public education. If you are a citizen, you get healthcare. But remarkably, stories of misdiagnosis are identical to those in the US. It seems that regardless of whether healthcare is an entitlement or insured, misdiagnosis still happens.

In 1999, Jason’s daughter Isabel, then age 3, was misdiagnosed and nearly died. From a “normal” case of chicken pox, she developed toxic shock syndrome, then necrotizing fasciitis, a med-speak term for flesh eating bacteria. But the doctors didn’t see it. They didn’t diagnose it until it was almost too late. Instead, because Jason and his wife trusted their intuition, and relentlessly pursued the REAL answers, Isabel eventually got the diagnosis and care she needed. Today she is a healthy, happy 11-year-old because of her parents’ diligence.

Now suppose your child almost died – or DID die — from a misdiagnosis. How would you feel? What would YOU want to do?

Most of us would be beyond angry, and rightfully so. Most of us would make sure we did everything we could to punish those providers who had killed, or almost killed our children.

But not Jason and his wife. Instead, they decided to do something to make sure nobody else’s child, and his/her parents and loved ones, would ever have to live through such a horror.

How? Jason approached the doctor who had been in charge of Isabel’s care — the one who was ultimately responsible for Isabel’s corrected diagnosis — and suggested the two of them collaborate on putting together a system for doctors worldwide to use to make sure all diagnosis possibilities were being considered for any given medical problem. The doctor, Joseph Britto, MD, readily agreed.

Since then, they’ve made it happen. A huge database of every diagnosis framed by all its possible symptoms — and vice versa — is available to medical centers and doctors’ practices worldwide. It’s being used by the likes of Yale-Newhaven Children’s Hospital, the University of Virginia Health System, and other esteemed — and very wise — hospitals and doctors, both in the US and the UK.

Yesterday I had the honor of speaking with both gentlemen. I think we could have talked for hours and hours because we have so much in common and we agree on so many fronts! Jason and I have almost identical advocacy stories, of course. We agreed that turning our anger into something positive for others is incredibly cathartic.

And I learned, and confirmed so much! Such as:

  • Did you know misdiagnosis is the 4th leading cause of death in the US?
  • Did you know most doctors jump to judgement about your diagnosis and frame it so tightly in their minds that they dismiss other possibilities? (Just ask Jerome Groopman.)

So as you can imagine — I am ecstatic that this system exists now. I wonder whether it could have saved me from my misdiagnosis odyssey? One can only hope.

And I do have a few questions about its use — one that will remain unanswered for awhile, and one that was answered, like the answer to a prayer.

Question One: is there any way to overcome the objections of the the way-too-many-doctors who see the use of such a system as stepping on their toes, to transcend their egos for its use? If I try to answer this question myself, I think the solution will lie in showing them it can save them money because there will be fewer lawsuits (yes — money — the root of all healthcare in the US). Please note I haven’t mentioned that they would be interested in using it to save lives.

Question Two: is there any way patients can influence use of the Isabel system? or use it themselves?

Both gentlemen were quick to tell me about the beta-testing of a system for us patients to use — the Isabel Symptom Checker — that we can use and share with our doctors. Yes!!

Now if you read my work regularly, you know I don’t, in general, support the use of online symptom checkers. I think the ones that currently exist are more problematic than helpful. You’ll either decide what your problem isn’t important enough to bother the doctor (and it might be life threatening!) or you’ll decide you’re dying of a rare disease (when you aren’t very sick at all.)

So why would I support the use of an Isabel-related system for consumers? Because it is intended entirely to COMPLEMENT your work with your doctor — not replace the doctor’s opinion. It is intended to help you and your doctor expand lists of possibilities — differential diagnosis options — not get in the way of your work with your doctor.

Until the patient-consumer version is available? Patients who are lucky enough to live in areas where hospitals or doctors currently use the system can choose to see those doctors. Find the most current list of Isabel users here.

So once again, my belief that everything happens for a reason is confirmed. I’m so sorry Isabel and her parents suffered as they did. But I’m thrilled that Jason took his anger in the direction he did. As the Isabel Diagnosis System saves more lives, others, too, will realize what a blessing their odyssey was, too.

I’ll keep you, my loyal readers, posted on the launch of the Isabel Symptom Checker. It’s most definitely an idea that’s time has come. Patient Empowerment at its finest.

Learn more:

Link here to the Isabel Healthcare System website.

Link here to an article in Forbes Magazine.

Link here to an article in the New York Times.

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