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10 Years of Lessons Learned from Misdiagnosis and Medical Mistakes

A hand playing the piano from a high angle view

Get better medical care: Practice Practice Practice!
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Think back 10 years. How old were you – or your kids or even your grandkids? (Did even have kids or grandkids then?) Did you live in the same place, or work for the same employer or do the same job you do now? Have you rearranged your living room furniture, or learned to use a computer, or even acquired a smart phone since then?  In those days 9-11 was still fresh like it had been yesterday, no one (except Al Roker) had heard of a polar vortex OR Barack Obama, the New England Patriots were the reigning Superbowl Champions, and Usher, Outkast, Alicia Keys, Maroon 5 and Beyonce were at the top of the music charts.  (And most of us had more hair, and weighed at least 10 lbs less than we do now.)

I ask, because 10 years ago today is the day I learned I had terminal lymphomaSubcutaneous Panniculitis-Like T-Cell Lymphoma to be exact. I learned that fact while on the telephone with the surgeon who two weeks earlier had removed a golf-ball sized lump from my torso about 7 PM that evening, July 14, 2004, while I had a house full of dinner company.

It was an impossibility on that day, or over the next couple of months, to think I would be here writing something for all of you to read today. Beyond the fact that blogs were barely in existence on any topic then  – I was supposed to be long dead.

That diagnosis changed my life in almost every way possible. It was the worst day of my life, but in the 10 years since, it became the turning point to the best life I could possibly have.

In case you don’t know the story – yes – I had been misdiagnosed. And I figured it out. And in fine “hell hath no fury” style – I chose to devote the rest of my life to helping others prevent the problems with their medical care that I had experienced myself.

I am, after all, a Proactive Survivor. And because I am, instead of dwelling on the horror of my medical experiences during those months in the summer of 2004, I will instead share with you what I have learned since then. Things I have practiced and practiced, preached and preached – and which can help you, too:

Continue reading ’10 Years of Lessons Learned from Misdiagnosis and Medical Mistakes’

Looking for Trisha Torrey, (former) About.com Patient Empowerment Expert?

messydesk

 

You found me!  Here I am!

And I’m moving back in, here to my personal blog. Home. Where I started writing about Patient Empowerment in 2005.

It’s been awhile since I’ve been “home.” Look around!  You can see how dusty it is. I’ve got to wash the curtains and get them back up. Clearly the place needs to be swept and vacuumed.  Those are all tasks I’ll get squared away in the next few days. Give me a week and I may even get some new paint on the walls.

Are you wondering why I’ve moved back home? 

Simple answer – it’s because I was sent packing.

Most of my regulars know about my work at About.com Patient Empowerment.  I started writing for About.com in late 2007 and in all, I published more than 800 articles on topics from how to be an empowered patient, to how to get your medical records, to how to look up CPT codes, to how to deal with an arrogant doctors and much, much more.  In addition to those 800 articles, I wrote more than 1000 blog posts!  And I would still be writing and publishing there today… except that….

I was terminated June 30.  Gone. Kaput. Right in the middle of my contract year.  They decided they didn’t want me anymore and cut me off. Chop chop.

If you want details, here they are.  But that’s not the point of this post.

This post is to tell you that I’m going to lead by example.  That is – throughout my patient empowerment work, the advice I always give to you is to stick up for yourself and to be sure to take responsibility for the situation you’ve been dealt.  Don’t take crap from anyone.  YOU are the most important stakeholder in your own care and to get what you need, you need to take the lead.

So that’s exactly what I’m doing here.  As much as I loved my work with About.com, it’s no longer an option.  So I’m moving back home, gonna spiff up the place, and will begin publishing again right here to keep my commitment to helping you, my readers, get what you need from the healthcare system.

Here are some of my plans:

  • I’ll be writing articles just like I was writing them before – so – what topics would you like to see?
  • One of the recent changes About.com had made was to take away YOUR opportunity to comment on articles and blog posts.  By publishing here, I’ll be restoring that capability.  So please do comment!  I learn from you every time.
  • In the past two years I was sending out only 5-6 newsletters a year from this personal site, but now that there will be no more newsletters coming from me at about.com* I’ll begin sending from here.  You can help too, by letting your friends know.  Here’s the link you need to get signed up.

Together we’ll weather the healthcare system together, whether About.com wants to help in that effort or not.  I’m still Every Patient’s Advocate. They can’t take that away from me.  And I’m here for you.

Are you with me?  Great!

(Now could one of you big strong guys help me move my desk over there – under the window?  It’s a beautiful day, and I don’t want to miss the sunshine.)

I’ll be back soon with some usable healthcare information.  All suggestions welcome :-)

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*about.com will likely continue to send patient empowerment newsletters, and for the foreseeable future, they will be my articles. But there will be nothing new that hasn’t been sent out in a newsletter previously. Feel free to unsubscribe if it gets to be redundant.

More:  At About.com, Experts Are Disposable

Sometimes It’s Better to Just Say No

Story One: When I was a child (and we’re talking a lo-o-o-ng time ago – when doctors made house calls)… if I got an earache, I would suffer.  REALLY suffer. Mom would drip some warm oil into my ear, and then stuff some cotton in behind it. She’d give me an orange flavored baby aspirin or two.  And I would just lie in bed, or on the couch, miserable.  MISERABLE.  Seems like I would sleep a lot. Two days later, my earache would be gone, and because I was a kid, and resilient, I would be back on my feet.

Story Two: When I was a kid, I fell off my bike as I flew around a corner near my house.  My bike flew off in one direction and I flew in the other, and landed smack on my elbow.  OH THE PAIN!  I pulled the cinders out of my arm, and cried all the way home as I dragged my bike with me.  That evening my dad walked me across the street to see a doctor who lived in our neighborhood.  He felt along my arm, moved it around a little, declared that I had sprained it, then put my arm in a sling where I was expected to keep it for the next few weeks.

Perhaps it’s miraculous that I survived childhood!  But I don’t think so.  I think any of us over a “certain age” had very similar experiences as a child.  We all had sore throats and earaches, we all sprained and broke bones – and we didn’t have the miracles of modern medical care to help.

Fast forward to today.  Today when we go to the doctor, no matter what the complaint, we are met with a barrage of tests, procedures and treatments.  If I had a sore throat and an earache in 2012, I would likely be given a strep test (chi-ching!) and prescribed an antibiotic (chi-ching!)  If I fell off my bike in 2012, I would be given at least an X-ray (chi-ching!), but more likely a CT scan.  I’d be prescribed an antibiotic (chi-ching!) and maybe even a pain killer (chi-ching!)  I’d need follow up testing to see how well everything was healing (chi-ching!)…

Bottom line – healthcare is so much more expensive today because we do things that we don’t necessarily need to do.  We are herded into services that we don’t necessarily need.  And (shame on us) we ASK for things we don’t necessarily need and probably shouldn’t get.

Don’t need?  Shouldn’t get?

Antibiotics, the miracle drug of the 80s and 90s, were so overprescribed that today the bugs they were intended to kill have evolved into superbugs. People die from acquiring infections that didn’t become problematic until the overuse of antibiotics.  Yet – mom takes her child to the doctor with an earache and insists an antibiotic be prescribed for her child.  Two days later, the child is no longer in pain.  (But is that any improvement over the two days it took me to get past my earache 50+ years ago?)

The existence of CT scanners, MRI scanners and PET scanners, and the need to pay for them, compel doctors to order those tests, even in cases when they may not be necessary.  Of course there are times when they are very necessary – but not always, and not as often as they are used now.  When it comes to so much extra scanning, it can create big problems for our health (too much radiation exposure from x-rays or CTs) AND our wallets – imaging is expensive, even when we have insurance.

So how can we know the difference?  How can we be a bit more savvy when it comes to test and treatments, whether or not they are suggested by our doctors?

Last month, a consortium of nine different medical specialties – the very doctors who make money when we have tests and treatments – came out with their lists of tests, treatments and procedures we patients don’t need.  They listed them all on a website, called Choosing Wisely.

If these doctors don’t think we should take these tests, then why would we have them?

What we know is that this elite group has made these recommendations.  What we don’t know is that those recommendations will filter down to the doctors who order these tests, treatments and procedures – because that’s how they make their money, and (they think) that’s how they can defend against lawsuits.  (We can only imagine how unhappy that orthopedist who makes his living running CT scans is with his own peers that tell patients not to get so many CT scans.)

So, knowing that our doctors may not be aware of the lists, or may have chosen to ignore the lists, it’s up to us patients to ask questions.  “Doctor, If I take this antibiotic, how soon will I feel better?  How soon will I feel better if I don’t take it?”  — or — “Doctor, I know an X-ray is much less expensive than a CT scan.  What will a CT scan tell you that an x-ray won’t?  Can I have just the x-ray?”

So yes, fellow empowered patients, it’s time for us to begin making smarter choices, both for our wallets and for our health.  Make yourself generally aware of the new recommendations of tests, procedures and treatments you just don’t need.  Understand that leaders in healthcare who understand about reining in costs, even if they are the ones who lose income, are calling out to their peers to make changes in their recommendations….

Unfortunately, anything in medical care takes a LOT time to implement.  But this is something we patients can do – and do with no detriment to our health OR our wallets.
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Want more Patient Empowerment?
Find hundreds of articles at:

Every Patient’s Advocate

About.com Patient Empowerment

and sign up for my 2x per month newsletter
full of Patient Empowerment Tips.

Time to Put a Stop to Drive-by-Doctoring

As many of my readers know, I speak at meetings and conferences fairly frequently, and most often to groups of patients and caregivers. The focus of the talks I give is usually on a patient empowerment topic – ranging from how to communicate with your doctor, to how to stay safe in the hospital, to a dozen other topics….

Every time I speak to groups of patients, I ask the question, “Have any of you ever felt rushed during a doctor appointment?”

The overwhelming majority raise their hands, and nod, and often turn to the person sitting next to them, poised to share their latest horror story about being rushed, which is often the case after they’ve waited in the waiting room for way too long.  A double whammy.

Frustrating. Maddening. Unfair.  And now, statistically accurate, including its negative effect on both our health and our wallets.

Newsweek Magazine published an article this week called The Doctor Will See You – If You’re Quick.  Written by Shannon Brownlee (author of Overtreated), it quantifies the problem of, what I call, “drive by doctoring” – the concept that we barely see the doctor walk IN the exam room door, before the doctor has retreated back out that door, asking the empty hallway (because he’s no longer engaged with the patient at all), “Do you have any more questions?”

The point to the article (which is excellent – you really should take the time to read it in its entirety), is that over the past few decades, the trusting relationship that used to exist between patients and their doctors has eroded to almost non-existent, and has resulted in bigger problems for both parties.  And both parties are suffering.  Patients don’t like it, and their doctors don’t like it either.

Or (another one of my sayings) – American healthcare is not about health or care. It’s about sickness and money – using sickness to make money.

Here are some of the points that support that:

  • The ideal patient panel (number of patients) for primary care doctors should be fewer than 1,800 patients in order to provide the kind of care patients need.  Today, the average number of patients per PCP is 2,300. And for “Medicaid Mills”, the panel is more like 3,000.
  • To speed things along, doctors interrupt their patients an average of 23 seconds into the answer to the question, “Why are you here today?”
  • One study showed that the average amount of time spent providing “critical information” to patients is 1.3 minutes (yes – that’s MINUTES.)  Your quality or quantity of life only deserves 1.3 minutes?

To those of us who understand this madness, and attempt to be smart patients, there is nothing new here. But the information is beneficial to us for a few reasons:

First – because our world is being driven more and more by data, and not simply our observations and stories. With the quantification of these kinds of problems, the powers-that-be will have to look at solutions, because no nation can afford sicker and poorer people.

Second – because this kind of information is a good reminder to us all that it’s us SMART, EMPOWERED PATIENTS who will manage to get the best of a system that has the capability to be great, but is growing worse every day.

We can’t help those who won’t help themselves… but we can be the ones who will STOP this erosion, and help ourselves.

•  Helping ourselves will mean we find the right doctors - the ones who WILL communicate with us. (A reminder that no doctor is average – they are either better than, or worse than, whatever average is. As empowered patients, we search out the “better than”.)

•  Helping ourselves means we place ourselves squarely in the middle of our own medical decision-making - we don’t default to letting someone else make them for us.

•  Helping ourselves means we find information to support our decisions, making sure it’s credible and reliable.

•  Helping ourselves may mean that we try to manage our relationships with our doctors on our own, or it may mean we ask someone else to help us.

•  Helping ourselves will mean understanding the roll the pursuit of profit takes on our health – we will understand the concept of Follow the Money and why that makes us poorer and sicker.

It took decades for the healthcare system to devolve to what it is today (just in time for us baby boomers to utilize it in huge numbers with, in too many cases, horrible outcomes.) It will take decades more to fix it.

Most of us don’t have decades to wait – and for that reason alone, we must engage in our own care.  We can’t afford, for our health OR our wallets, to let drive-by-doctoring take its toll on us or our loved ones.

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Want more Patient Empowerment?
Find hundreds of articles at:

Every Patient’s Advocate

About.com Patient Empowerment

and sign up for my 2x per month newsletter
full of Patient Empowerment Tips.

True Confessions – My Take on Health Care Reform

Last week we watched (or more likely heard summaries during newscasts of) the Supreme Court’s (SCOTUS Supreme Court of the United States) hearings on American healthcare reform (AKA The ACA, Affordable Care Act.)  For those of us engaged in health-related issues every day, it was fascinating to watch the transition, and the voices of pundits, from “they will” or “they won’t” or whatever that day’s interpretation was.

Watching this culmination of many years of reform efforts has been fascinating to me. And in the midst of it, I realized that many of my regular readers have probably made assumptions about my take on healthcare reform that may not be true.  So yes, today it is time for some true confessions.

First Confession:  I am a registered Republican and, for many aspects of politics, (economy, defense) a conservative. I am, after all, a small business owner. It would seem, then, that I would be against reform of the system.  However…

As someone who has been personally buffeted by the system, during a time when I was insured (meaning responsible), the conversation held special interest to me.  Because, despite the fact that I was insured, and even though my diagnosis was wrong, I still lost my life savings (all except my house and my retirement).   So as you might imagine, beginning when the 2008 presidential elections began to play out in the media, I was immersed in the questions and arguments about healthcare reform. It was highly personal.

As a result of my conservative business nature, combined with my in-the-trenches understanding of how the healthcare system works in the United States, I was truly conflicted!

In those days, I did a lot of speaking on the subject of healthcare reform.  I believe so many invitations came along because I established a reputation of being able to see and argue all sides of the argument.  Perhaps because I was so conflicted, I could switch sides at the drop of a hat, and plays devil’s advocate no matter what the argument.  I would challenge my audiences to see if they could determine whether I supported reform or not – and rarely could they tell.

Second Confession:  Even though I could intellectually understand and argue why big business “had to do what it had to do,” I never could reconcile in my heart that the current non-reformed system is geared to only the “haves.”  The current system is very much about making sure the have-nots (or choose-nots) cannot access care except through emergency rooms, or by going bankrupt. Period. It’s very elitist – all about controlling those who can’t afford care and making sure they get sicker and die, while reserving decent care for those who can afford it.  And THAT is not me.

And that is not me MORE than the capitalist conservative IS me. And so yes, despite the fact that the ACA is highly flawed, and despite the fact that it requires many changes to make it work well, and fairly, I believe that we must start somewhere and so, yes, I am in favor of the ACA and hope it remains the law of the land.

Fast forward to today – two years post passage of the ACA, and a week past Supreme Court arguments, and…

Third Confession: I am less conflicted than I was then.  Why?  Because in these five years after the arguments have begun, I have seen Americans pay attention to aspects of healthcare they have never paid attention to before. Even if I still heartily disagree with those who are against reform, I know that they are seeing the fruits of what has taken place so far.  Maybe they had pre-existing conditions and, for the first time, have been able to find insurance again. Maybe they have a 23-year-old college graduate who still can’t find a job, but could stay on their family health insurance policy. Maybe they are seniors who have found the donut hole shrinking.  Whatever the reason, at least we as American citizens are engaging in the decision-making process – even if some are on opposite sides from my own thinking.

Fourth Confession:  I am totally confused (and hope someone can enlighten me) on why on earth conservatives want to shoot down the individual mandate.  Their arguments against it just don’t make sense!  Republican conservatives are all about personal responsibility, and so many of the arguments against reform have been aimed at problems that have occurred before now because people don’t take responsibility for making sure they have health coverage.  The individual mandate is what makes “lazy” people (the ones who are working six jobs, none of which offer health coverage), and “poor” people (the ones who have been laid off because of Wall Street greed), and young people (the ones who are bulletproof and won’t ever get sick, so would rather buy stuff than invest in health coverage) get coverage.  The individual mandate is what prevents those who run up their costs beyond what can ever be repaid (today) not have to file bankruptcy because – well – they had coverage. The individual mandate is what controls costs for the rest of us who HAVE been responsible.  So – WTH?  I just don’t get that.

And finally, my

Fifth Confession:  (I have confided THIS confession only to my closest friends before today.) Personally, and in a selfish way, it doesn’t matter to me what the Supreme Court decides.  Because no matter what the Supreme Court decides, I and my loved ones, will be just fine. Whatever their decision – it’s job security for me.

The Supreme Court’s decision won’t affect my ability to be insured because my husband is retired from the military, so we have decent coverage for our lifetimes. Our children are all well-employed in jobs that won’t go away, so they are in good shape, too.

No matter what SCOTUS decides, Americans will continue having trouble getting what they need.  I predict that if the ACA is blessed by SCOTUS, then there will be more confusion in the short term, but less confusion in the long term.  And if they strike it down?  Well then, my fortunes will multiply because my career is all focused on either helping individuals get what they need from the system, or helping them find a health advocate to guide them.

Which, of course, goes back to my original statement…. that is…. I’m a business owner and a Republican.  I’ll just continue to grow my business.  And that creates one heckuva circular argument – don’t you think?

So there you go – my five confessions about healthcare reform.  They say confession is good for the soul.  While I’m not sure this has done much for my soul (because it certainly doesn’t resolve any of my personal conflict!), I do hope it has given you some food for thought.

…MORE…

•  Where Does Rationing Fit Into Healthcare Reform?

•  What Is Socialized Medicine?

•  What is Universal Healthcare?

•  Where Does Rationing Fit Into Healthcare Reform?

•  Follow the Money: How Money Affects American Healthcare

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Want more Patient Empowerment?
Find hundreds of articles at:

Every Patient’s Advocate

About.com Patient Empowerment

and sign up for my 2x per month newsletter
full of Patient Empowerment Tips.