Why patients have to be their own advocates

I am a 47-year-old female.  In December of 2010, I had surgery to remove a 2 inch atrial myxoma (a heart tumor) in my left atrium.  The costs for that were astronomical.  That is not what I am writing about.  I am writing about what happened in the months after my surgery and a cure that cost $9.19 if you don’t count all of the unnecessary doctor visits and procedures.

Shortly after my atrial myxoma  excision surgery I began experiencing symptoms similar to rheumatoid arthritis.  I visited my internist and he ordered lab work to see if I had this.  The lab work was negative but I continued to experience severe joint pain.

New symptoms emerged including severe headaches and some numbness.  More symptoms started to show up over time.  I had pericarditis, pleuritis, chostochondritis, atrial flutter and atrial fibrillation.  These symptoms had me back in the ER a few times which included having several electrocardioversions for the arrhythmias and an MRI and CAT scan for the headaches and numbness for suspected mini strokes.

I was sent to 2 different neurologists.  One said I was having migraines and the other said I was possibly hyperventilating. I also had follow up care with my cardiologist a few times and an electrophysiologist a few times.  They put me on a medication for arrhythmias and were considering ablation surgery for the arrhythmias. My cardiologist also recommended I go to a rheumatologist because a lot of my symptoms sounded like an autoimmune disease.  The rheumatologist’s tests for lupus were negative except I had high C-reactive protein levels. I had been Googling as the symptoms piled up to see if there could be some mystery diagnosis that the doctors were missing.  I stumbled on Dressler’s syndrome, aka postpericardiotomy syndrome.  All of the symptoms fit since I had recently had my heart surgery to remove the atrial myxoma.

Armed with my new information and a potential diagnosis, I went back to my electrophysiologist with my list of symptoms and told him what I suspected was happening.  He concurred with my diagnosis of Dressler’s syndrome.  He told me ablation surgery was not indicated for my condition. All I had to do was take 600mg of ibuprofen three times a day for 2 weeks.  The cost of my cure was $9.19 for a bottle of 150 ibuprofen tablets on sale at CVS.

What’s the moral of my story? You have to be your own advocate.

Angie Dresie is a patient.

Why patients have to be their own advocatesThis post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American healthcare delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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  • Jason Simpson

    So it never occurred to you to try ibuprofen when you were having joint pain?

    Hell that would have been the FIRST thing I tried prior to going to a doctor.

    • Dr. Drake Ramoray

      It is unclear to me why you are disparaging the author (I don’t disagree with the question although I would have certainly framed it differently) for figuring out her own diagnosis, when I’m actually wondering why the cardiologists she had been seeing couldn’t make the correct diagnosis. Anti-arrhythmia medications are not without side effects, and ablation procedures are not without risks, although the author is unclear as to whether or not she needed these medications or procedures after the diagnosis of Dressler’s syndrome was made. I’m also curious as to whether or not the patient sees the same cardiologist now. To my knowledge I have not missed a diagnosis in my specialty, and have occasionally picked up ones not in my specialty, but if I was that cardiologist I would be very embarrassed. Strong work on the patient’s part though.

      • Steven Reznick

        With all due respects to your training ,experience and diagnostic acumen, we are all human and not perfect and we all miss a diagnosis in our specialty over the course of our professional career. Yes it is humbling and embarrassing and a cause for self reflection and re-evaluation but all you can do is keep current, ask for help when you are not sure or not being successful and thank your colleagues for their counsel and assistance. This patient has a legitimate gripe and did an outstanding job of researching her symptoms and solving her problem. I am sure you did not intend to sound God like but in a blog it certainly sounded arrogant and physician arrogance is one of the areas of patient complaints repeatedly heard.
        I prefer being a bit insecure and realizing that I do not know everything and have to really work hard continuously to continue to learn so that I stay current and competent.

        • Dr. Drake Ramoray

          We indeed are all human and make mistakes. I was actually trying to point out that rather than ask a patient why she hadn’t started a treatment for the diagnosis that was going against what her doctors have told her is wrong with her, I am more interested in the interaction she had with the physician (what was his behavior, how did he/she take it… I would have been very embarrassed and mean that with the utmost sincerity) and whether or not she continues to see that doctor. I thought the initial question to which I was responding was a valid one, although I thought it could use some rephrasing (as it would appear does my response).

          Furthermore, I am interested in whether or not she still required the other treatments that are recommended. I am not terribly familiar with Dressler’s syndrome and I’m interested to know if she ultimately required those additional procedures or medications anyway despite her diagnosis (her comment about $9.19 leads me to believe that the answer is no although she may have had coexisting issues.)

          Perhaps on the internet it does sound arrogant, but to date I have not missed a diagnosis THAT I AM AWARE OF, thus leaving the door open that perhaps I have and never saw the patient again. On the rare occasion that I have been in that position of the one making the diagnosis out of my specialty the patient was quite upset with the referring doctor and she refused to go back to see them.

          There may very well be someone out there like that for me, although I have not encountered that scenario to date in my relatively young career. No God complex here, certainly have made my share of screw ups, a couple that resulted in bad outcomes in training (one particular on the Cardiology service that will stay with me forever). I have also chosen incorrectly before when I had to differentiate between two diagnoses with the inability to obtain complete information (can’t do thyroid imaging for patient’s who have recently received iodinated contrast.) I genuinely have not experienced the topic of missing a diagnosis from the end of the physician error as an outpatient since I have finished my training.

          In the time it has taken me to write this I haven’t come up with a better way to say that than To my knowledge…….. and as such I am interested in their current standing, and how that appointment went.

          • rbthe4th2

            Thanks! Its good to hear docs say this. I can deal with docs who mess up and fix it. I can’t with the ones who don’t know how to fix it or won’t, and simply refuse to see it due to ego. I seriously jaw dropped someone in hospital admin telling them, hey look, nobody is perfect, why can’t we work together? I’m not coming here to spend years in a lawsuit, I’m coming here for us to work together to fix health problems I have. I’m hoping it is a doggone site quicker getting me fixed than it is fooling around with some lawyer in a courtroom. I’ve been thankful to see docs like Dr. Ramoray. Just wish he worked in my area of the country!

        • Karen Ronk

          Great point about arrogance/ego. I am significantly worse after a surgical procedure on my shoulder, and instead of my doctor trying to help me figure out what happened, he just said normal setback, nothing wrong here. I have a new doc now but lots of wasted time, money and pain in the meantime. Patients do not expect perfection, we just want genuine concern for our well being.

      • rbthe4th2

        My docs that have done this blame the patient. Everything from PCP to specialist. Ego is the name of the game – I’m sorry, but that’s true of quite a few docs I know. The ones that don’t, they seem to fix me up pretty quickly.

  • Suzi Q 38

    I so agree with you.
    After having had a couple of bad outcomes with doctors that did not care, I check with the internet for additional information. Thank goodness I trust my PCP and my GYN as “navigators” for my health care.
    The specialists are good but I don’t know who they are, or if they care.
    I have to rely on my PCP to pick decent ones for me, and if he doesn’t know anyone for this or that, I have to check with the GYN.
    With all of the problems that I have had with my nerves, I have ignored the fact that I had a tumor (located in my left ovary) removed in 2011.
    Doctors are generally well-meaning, but are too busy and miss a lot of stuff.

    Good story.

    • rbthe4th2

      It isn’t that they are too busy at times. I’ve seen their like or dislike of a patient cloud clinical judgement. Or they’ve not kept up with new developments or if something doesn’t “present” in the way they’re taught, they don’t figure it out. The other is the inability to look at a patients’ symptoms and interpret blood work in relation to that. Those blood work ranges work for 95% of the people, but that doesn’t mean people are cookie cutter and don’t “present” when those labs are good. I’ve seen tons of serious diagonoses get missed because the computer said all lab values were fine.

  • Dorothygreen

    It seems after reading this again, checking out the treatment for pericarditis this is a string of failures on the part of the specialists and hospital or withholding of information about the surgery from the author which I doubt by the very fact she wrote this. It has also caused a lot of unnecessary suffering and cost to the patient as well as insurance companies and ultimately taxpayers. I am not a lawyer but it seems to me this sequence of events should be investigated. There are beneficiaries here at the expense of the patient and taxpayers.

    First – I am assuming that the patient was given information by the electrophysiologist of the possible side effects and adverse effects of the procedure (after all, don’t we get them with any pharamaceutical or other procedure?

    Then shortly thereafter the symptoms appear. Tests done to rule out RA. Labs negative. No symptomatic relief suggested? No elevated CRP?

    Author then states situation worsens – gives us dx of pericarditis, and other itis’. It is easy enough to find that pericarditis is treated NSAIDs without a Dx of Dressler’s syndrome. Treatments and drugs By Mayo Clinic staff

    Your treatment choice for pericarditis depends on the cause as well as the severity. Mild cases of pericarditis may get better on their own without treatment.

    Medications – Medications to reduce the inflammation and swelling associated with pericarditis are often prescribed, including: Over-the-counter pain relievers. Most pain associated with pericarditis responds well to treatment with pain relievers available without a prescription, such as aspirin or ibuprofen (Advil, Motrin others).

    Then you were sent to 2 neurologists because of other symptoms. Ching, Ching.

    The electrophysiologist knew immediatedly.

  • hadhag

    My how low physicians have gone…
    We’ve gone from being the premier patient advocate to this.

  • http://joannevalentinesimson.wordpress.com/ ValPas

    When I was going to a doctor for “fevers of unknown origin,” refractory to diagnosis, I called a former colleague, a pathologist, and he said, “Stay away from the doctors, they will kill you.” Probably one of the reasons for the “success’ of Homeopathy is that the “doctor” really doesn’t do anything (the diluted nostrums have no biological effect), but your body has time to heal itself. (P.S., the fevers did eventually go away in about six months. It may have been some mild pathogen I was exposed to in a new environment.)