Friday, February 11, 2011

Lost: Patient Power, Reward if Found

There is a conversation on Brain Fog about doctors and patients that I've been participating in over the last few days.

I declared in one of my comments that the doctors have all the power, the patients don't have any.

A declaration that one of the doctors commenting felt was wrong.

Well, let's review, shall we?

Yes we shall. Oh, yes we shall.

When the A$$hole Allergist declared I didn't have asthma and maybe I had a heart problem or chronic embolism issue but didn't arrange for any diagnostic testing...

I complained.

About the lack of follow up.

About the poor testing protocols.

About the abusive behavior on the part of the physician.

Go patient power. Want to know what my 'power' did for me?

Nothing.

I still couldn't get a doctor in that system to prescribe asthma medication and spent the year using leftovers from the previous year, skipping doses to conserve what was left.

And there was still no follow up on the idea of heart or embolism problems.

The HMO did assign a new doctor to me, but it was months later which was kind of useless.

Not only was the A$$hole Allergist's bad behavior not addressed, the HMO wrote me a response and said "they didn't mean what they said." Awesome. I didn't know there were take backs in medicine. Not like that.

Am I alone in thinking that patient power is slow?

When I looked up the State Medical Board's guidelines for filing formal complaints, I found what the A$$hole Allergist did to me wasn't bad enough for a complaint.

Note: I have never ever complained about a doctor before, the A$$hole Allergist was my first. Also? I plan on complaining as much as possible, not under the illusion that it will help me, time moves too slow in medicine for that, but it might help the people after me.

When I was hospitalized with asthma the following year (now with health insurance that allowed me to see a pulmonologist who believed* I had asthma) and asked for cortisol testing because I was having problems similar to what had happened to me in the past where my am cortisol was 1.3 (I keep saying 1.9, but it was actually 1.3).

I was told no.

That it wasn't adrenal.

Yet here I am, Miss Adrenal for 1994, 1995,1998, 1999, 2000, 2010 and 2011.

Yet doctors still deny there's an adrenal problem. Including the endo who ran the blood work that yielded an am Cortisol of 6 and that was with steroids in my bloodstream (And yes I'm going to repeat that over and over until every single doctor in the universe reads it and gets a clue).

Further in the midst of this, some idiot tried, again, to tell me I didn't have asthma. Somehow they missed the part where I was in the hospital just a few weeks prior with pulse ox readings as low as 90. Not that they looked at the medical records in their computer system documenting this. No, why do that when the information would run counter to their beliefs*? They wanted me to go to therapy because they subscribed to the mind-body connection, one in which everything stems from mental illness.

Seriously, I can't make this sh*t up.

So I doctor hopped a bit which really doesn't do much other than highlight the flaws of medicine, so glaring the physicians are blind. Any positive medical outcome to date has been more a happy accident than a physician recognizing the adrenal glands are driving my problems (with the exception of the one endo who 'got it' but didn't run the testing so all the other docs persist with the idea it's not my adrenals because I don't have a test proving it so).

I am sometimes encouraged by others to go see even more doctors under the misguided belief that not all doctors could be so ignorant. I refuse, because yes, they can all be that ignorant so what's the point? The reality is, all I need are steroids and occasional blood work, if I can manage to weasel that out of the medical system, I can take care of myself regardless of what diagnosis is or isn't assigned to me.

However, I have a feeling that this is not what 'they' mean when 'they' talk about patient power.

But it's all I got.

I can complain but it doesn't result in anyone prescribing the medications and tests I need. Nor does it correlate with an improvement in physician quality or performance.

I can ask for another doctor or make the appointment myself (if the insurance allows) but a)it eats up enormous amounts of time, time in which things can go wrong and b) there's no guarantee the next doc will be any better. Better the devil you know than the one you don't.

Further, with asthma, there is a certain amount of incapacitation during acute phases where I can't defend myself because I can't talk or reason well.

So where is my power and how do I use it? Please tell me.

Oh and here are some more examples of my Patient Power in action for your reading pleasure: the bullying Jesus Doctor nutjob and the pulmonologist who screamed at me. There's also the primary care physician who took my vicodin and ran, but I haven't had a chance to write that story up yet.

Oh yeah, I sure do have all sorts of patient power.

If you define that as being constantly ignored and having a talent for finding the weirdos in medicine.

In which case, I am a mega watt super star, baby.


*I use believed and beliefs quite deliberately here as it is what the doctor believes more so than any objective evidence that confers diagnosis and determines treatment.

4 comments:

  1. Oh wow. I thought my experience was twilight zone...nothing compared to what you've been through.

    I found the balance of power improved when we joined the concierge medical clinic. I was very fond of my former family physician, but she was determined to treat my lab numbers, not my symptoms. Even when my TSH was over the range she wanted to 'wait and see'...

    I wish I knew the answer. There are very few opportunities to exercise power as a patient. I'm hoping sometime along my dissertation I'll start to be able to understand this better.

    ReplyDelete
  2. Wow. All I can say is ... wow. I've had some idiotic doctors in my day, but yours? Totally knock it out of the park.

    I don't have anything to say except I now understand even more why you chose the name for your blog that you chose.

    There are some good docs out there, but I grok that it's like searching for the needle in the haystack. :-/

    ReplyDelete
  3. See the following steroid tapering regimine:
    http://www.scielo.br/img/revistas/jped/v84n3/en_n3a03t3.gif

    From:
    http://74.125.155.132/scholar?q=cache:rmQ-8MDMoZYJ:scholar.google.com/&hl=en&as_sdt=0,26&sciodt=0,26

    ReplyDelete
  4. It is truly difficult to maintain an open mind during each new encounter with a doctor. I've been burned a lot, perhaps worse than most. I tried more than 40 years to get a diagnosis. By the time I found out what was ailing me, I had stage IV cancer. A rare one, at that. But I am determined to find the best care possible for myself. I've learned to have a few "quiz questions" in mind before I see a speciaist. If they give the right answers, I continue but I always consider myself the consumer. I insist on being treated as a equal member of the team. I want to be as educated about my disease as the doctors and sometimes I encounter one that is dismayed by what I have learned. I usually can't work with them. Don't give up on finding the doctors who will work with you or for you.

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/