Jul 14 2014

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:

  1. (Listed first only because it’s so relevant to the date) – Avoid medical care in July, or anytime during the summer, if possible. More than 200 studies have proven “the July effect.”  That is – that any hospital that employs student doctors (those just out of medical school, usually in their first year of residency, formerly called interns) – watches their rate of medical errors go up in July. All medical errors have a negative effect on patients – and you don’t want to be one of those patients. I was. It wasn’t pretty.
  2. Take responsibility for your own care.  After all, if you don’t stick up for yourself and seek what you need, you cannot – CANNOT – expect the system to provide it. Don’t be a lemming, just doing what you’re told. Be your own best advocate. I did. It’s how I beat the system.
  3. Prepare questions before appointments, and don’t let the doctor leave the exam room until they have been answered or you have been provided with resources for getting the answers. You can’t make good decisions without all the input you need to make them. You (and your insurance) are paying the doctor to be your chief resource, so insist on getting what you’ve paid for. I did ask those questions – and disproved that cancer diagnosis.
  4. When hearing a diagnosis, ask for the alternatives, too – the differential diagnosis. A simple question, “what else can it be?” should yield other diagnoses that reflect your symptoms, and a conversation about why your doctor ruled them out.  Very few diagnoses are so black and white that there aren’t alternatives. In my case, the first opinion oncologist insisted that my hot flashes and night sweats were classic signs of lymphoma – dismissing the fact that I was 52 years old! (Seriously….)
  5. Get a confirming opinion, if your treatment will require anything invasive (like surgery), toxic (like chemo or a difficult-to-tolerate drugs) or lifelong (any drug you’ll need to take for the rest of your life, like a statin or for high blood pressure.)  You need to find a second doctor, unrelated to the first (meaning – in a different practice, on the other side of town or in a different city, who doesn’t go to the same church or temple and whose kids don’t play together) because two doctors who consider themselves colleagues won’t contradict each other. Until you have a confirmation of your diagnosis, you should not agree to treatment. I never did get a confirmation, and then… I never did get treatment.
  6. Which leads to treatment decisions.  Most doctors expect you to “adhere” to treatment. They expect you to take the drug or undergo therapy in the way they have prescribed. But a smart patient will be sure he or she UNDERSTANDs the treatment, the pros and cons, the possible problems, the consequences of taking it (or not) – and will negotiate with the doctor if there is any question about adherence. Can’t afford the prescription? Then don’t leave the office letting your doctor think you’ll be adherent. My first opinion oncologist knew perfectly well I had no intention of following his recommendations. Why on earth would I agree to chemo when they could find no additional evidence of lymphoma in my body? I was most definitely NON-adherent – on purpose. However, in most cases, greed upon treatment, then adherence, is usually a good thing.
  7. Don’t accept arrogance or passivity. All that advice above will only work if your doctor is willing to be a partner with you. A doctor who tries to bully you (through word or body language) – or a doctor who won’t engage in a conversation – won’t provide what you need.  Change doctors if you have to. My first oncologist was horribly arrogant. I called him on it – and walked. (Although today I actually give him some credit for propelling me into my patient empowerment career. Had he not been so arrogant, I’m not sure my story would have taken the turns it did.)
  8. Ask everyone who will touch you to wash their hands. That’s true whether you are in the doctors office or the hospital. The idea is to avoid infections, of course. And while they are at it, ask them to sanitize stethoscopes, blood pressure cuffs, the pulse oximeter (that gizmo they stick on the end of your finger that measures your heart rate) – anything that touches you that might have touched someone who was sick before you, should be clean and sanitary so you don’t get an infection. I have no part of my story to share regarding this advice. I didn’t get an infection from the outpatient surgery that removed my original lump.  Dumb luck.
  9. Double check your medical records. Especially now that most records are kept electronically, the stage is set for more errors than ever. Most doctors hate to type and aren’t very good at it. They might dictate notes which are then transcribed overseas by someone who is not native English speaking, or transcribed by a machine that misses key words.  My medical records were at the very center of my misdiagnosis, eventually becoming the evidence that proved I didn’t have lymphoma. Not only were the original pathology reports wrong, but they had been misfiled – that’s a part of the story, too.  The first oncologist didn’t even read the two reports he had.  Make sure you get copies of your records – and review them for accuracy.  If there are mistakes, get them corrected.
  10. Finally – if you can’t do all this yourself, if you need someone else to help – then ask.  If a family member or friend can help – great. But if you need the big guns, ask a private patient advocate to help you out.  That’s what they do – professionally!  A private advocate may save your life.

As you can see – 10 years of learning condensed into one blog post! I hope you find it helpful, and hope you’re able to follow along.  You, too, can minimize your chances of being the victim of a medical error or misdiagnosis.

My best advice is to practice, practice, practice!  It may take a while. But it’s vital you get it right.

A toast to 10 more years!  If I learned this much in these past 10, what do you suppose the next 10 will look like?  And – as importantly – how much will you learn, too?

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2 comments

    • Rick on July 17, 2014 at 3:01 pm

    I just wanted to say that I enjoyed this blog very much. I have written you before when I disagreed with something you wrote but this was very helpful. My brother has been diagnosed with Parkinson’s and I only have second hand information from him and have not spoken to his doctors but I will now. Thank you!

  1. Rick – happy you found this one useful, and not so disagreeable.

    I promise you that you aren’t the only one who has disagreed with me over the years! I can’t say I love disagreement, but I can say I usually learn something from it. When you think of the topic – healthcare – and the basic problem – that most patients have never learned to stick up for themselves – I suppose its surprising there isn’t more disagreement than there is.

    So – I simply invite you to weigh in as you feel the urge to do so, as you have done to this point. Your viewpoint is welcome as long as it isn’t inflammatory or factually wrong.

    Trisha

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