Wednesday, March 19, 2014

Booted by Western Medicine All the Way to China

I have decided to make a serious exploration of a medical system that does not include in its focus an over-reliance on available medical testing equipment, a protocol developed by insurance companies, and a strong affinity for doing whatever invasive thing will cover one's arse for liability purposes.

So, friends, I haven't brought this up before but it's time.  Thanks to a series of unfortunate medical care experiences, I've decided yes...well... I'm having trouble getting it out of my mouth.

This is why I haven't brought it up before... it's a difficult thing to admit.  I have no idea what you will think of me.  But now that I'm further along in my nascent exploration, I'm going to take the plunge and bring you into my thinking process.

But maybe I get ahead of myself.  Maybe this would be easier to tell you if I contextualize my decision with a couple of stories.  Be forewarned that there is female parts talk in this story.  If that's problematic for you, this is where you exit.

BACKGROUND:  Once upon a time, I had a cyst removed.  When the surgeon went in, she found that the cyst had grown into my right ovary.  An otherwise perfectly good ovary was playing hostess to a cyst and causing me pain.  So, along with the cyst, out came the ovary.  Now, what comes next is going to be over-simplified both because that is how it was explained to me and because it doesn't make a hill of beans' worth of difference at this point to clarify the nuances.  A drop in estrogen triggers another hormone (name forgotten) that is supposed to rekindle estrogen production.  However, if that doesn't happen, that other hormone just keeps trying until... bad things happen.  One of those bad things is a decline of the function of the thyroid.  You see, all these hormones operate as a system.  Thyroid and female hormones and adrenal gland, etc, etc.  I got progressively tireder until I couldn't keep my eyes open from about 3 pm in the afternoon until about 6 pm.  I was worthless.  I was a danger to myself in a car.  If I had to work or go to a meeting, I had to pump myself up on so much caffeine just to stay awake that I couldn't sleep at night, which created further complications.   And yes, I've since been told that I should have been given a hormone supplement to ease the abrupt drop off but let's let that go.  It didn't happen and here we are.

Story No. 1:  Dr. A has an excellent reputation.  In fact, I was referred to her by a friend I trust implicitly to know good doctors from bad.  My first meeting with her goes well.  She takes a bunch of blood work and returns a verdict of guilty thyroid, along with some other hormone imbalance stuff.  I am getting to that age, and all.  She prescribes a thyroid supplement and compounded hormones.  The thing is, prescribing hormones is a fine art.  Our bodies make them, and so there is no "one dose."   You wait awhile, retake the blood work, and see how you feel.  It's a process and something of a fine art.  So, over the next year, I have my blood drawn about six more times.  I submit to assorted other tests.  Things still aren't well adjusted.  But on top of all that, after the first visit, I never see my doctor again.  She is always on vacation or at a conference or anywhere but in her office.  And every time I show up, I see a different nurse practitioner.  I don't know if it's a turn-over problem or she just employs a lot of different people.  At any rate, of all the things that can go wrong when the doctor is not overseeing her own patients, here is my favorite thing:  One day, following one of these blood draws, I get an urgent phone call from one of the nurse practitioners that I must come in immediately for an adrenal treatment of some sort.  I am startled and say so, because as far as I know, I have no adrenal implications.  This was just a routine follow-up blood draw and shouldn't turn up something brand new.  She insists.  I refuse.  She says it is urgent.  I doubt aloud whether she is looking at my chart or someone else's.  I ask for the doctor to review the test results.  She tells me the doctor is on an island somewhere sipping an umbrella'd beverage.  She says my treatment won't wait.  I make her call the doctor, wherever she is.  It turns out that the blood work belonged to someone else, and my blood work is lost.  One wonders whether the patient who needed the urgent adrenal treatment ever got it.  One wonders what would have happened to me had I been a more mousy, less assertive patient and quietly succumbed to the test.  In the course of a year, I have visited the practice nearly a dozen times and seen the doctor once.  Given the craziness of the U.S. medical payment system, one does not wonder why the doctor put the nurse practitioners in charge.  It's easier to make the practice pay (and more fun too) if you let the lower-paid nurses do all the doctoring. 

Story No. 2:  In my search for a replacement for Dr. A I consult my pharmacist because I need a doc who will prescribe compounded hormones.  My pharmacist refers me to Dr. B.  As I am still a student, I begin a dance with the folks at the university's Student Health Center to get around the insurance company requirement that I make an actual visit to the Health Center (in another state) for the referral.  By the time I get in to see Dr. B, I am out of thyroid medication.  I've brought all my charts with me, and the doctor looks at my hormone levels and freaks out.  Yes, I mean that.  Her bedside manner included forcefully projected anxiety and if I was more easily frightened, well... let's just not go there.  Apparently, under the watch of Dr. A's nurse practitioners, my assorted female hormone levels had escalated into a danger zone.  Or perhaps it's just a difference in opinion, but I'll never know because there's no way to facilitate a conversation between Dr. A and Dr. B.  At any rate, Dr. B tells me to get off everything, wait six weeks and then return to her office for another blood draw. Six weeks and ten days later (after the blood draw), I am called in to see... you guessed it... a nurse practitioner.   By this time I am feeling pretty crappy again.  However, the nurse practitioner informs me that their office will  prescribe the compounded hormones but not the thyroid medication.  She wants me to see an endocrinologist for that.  Surprised, I explain that all these hormones - female and thyroid - work together and can't be treated independently of one-another.  She declines anyway.  I try another tact, tell her I'm having a very difficult time working and ask for just one 30 day supply of my thyroid supplement while I go through the Student Health Center dance again to get a referral to an endocrinologist.  "No."  I ask to speak to the doctor herself.  She trots back somewhere but comes back to tell me the answer is still "No."  I plead with her for compassion.  I can barely function, I have to work, and they are leaving me without treatment.  She is really getting irritated by my advocacy in favor of myself.  I ask to see the office manager.  The office manager also tells me "no" and asks me whether I will willingly leave the office or wish to be escorted out.  I am an uncooperative patient and have been booted from the practice!  

Story No. 3:  I am exhausted and ill, but through sympathetic friends I find Dr. C.  She is an internist and will treat everything.  She is lovely, gives me a prescription for thyroid, and we begin the process, once again, of finding the right balance of hormones.  At some point over the next year, I begin vaginal bleeding.  I make an appointment, but the doctor's schedule is packed and I have to see... the nurse practitioner.  I should tell you that I have friends who are excellent nurse practitioners and this one might be too, except perhaps she spooks too easily.  I come in for my appointment.  She looks at my chart, we talk, and we agree it is highly likely to be a problem with my hormones which we are still in the process of fine-tuning.  However, to be on the safe side, she asks that I get a trans-vaginal ultra sound.  I do both things.  The ultra-sound results come in two days before the hormone panel and the same nurse practitioner calls to tell me that the ultra-sound is clean - but I must go see an oncologist pronto. Now I don't know about you, but there is some cognitive dissonance for me when I hear "the ultra-sound is clean" and "you need to see an oncologist."  I asked if there was something she wasn't telling me.  Although she says "no," I manage to ferret from her that the radiologist who read the ultra-sound made a notation on my chart to the effect of "Can't find the problem.  Next stop, oncologist for a tissue biopsy."  However, the radiologist did not have the benefit of my entire chart. She did not know that we had a theory based on the entirety of my situation, or that I am in the middle of balancing hormones.  She did not know a crucial hormone panel would be back in two days.  All she knew was that I was bleeding and she couldn't find it.  I suggest to the nurse practitioner that we wait the two days (did I mention it's only two more days?) until the hormone panel comes back before I go through a painful, expensive, invasive procedure.  "No."  "Why not?  What am I missing?"  She won't say but keeps urging me to see the oncologist now.  At this point I may have asked her whether the urgency has to do with covering her office's arse because of the radiologist's notation, and of course, she denied that.  We are going around in circles and I am tense because either there's something she's not telling me, or it's a total CYA move, and either way, I need to know the truth.  So I beg for any valid reason why, given that we DO believe it's probably hormones and I have a nice, CLEAN ultra-sound, we shouldn't wait TWO DAYS for the HORMONE PANEL TO COME BACK.  Now you need to know that those capital letters represent my raising my voice at Dr. C's nurse practitioner, behavior for which I later had to answer to Dr. C and for which I apologized to the nurse practitioner.  Note: Neither the nurse practitioner nor Dr. C apologized to me for scaring the bee-jeezus out of me in hopes of covering their...  In the end, I simply refused to make the appointment with the oncologist and told the nurse practitioner to make a note in the file that the patient willfully refused to see the oncologist before the hormone panel came back.  Oh, and yes, it was hormones.  Adjusted.  Bleeding stopped.  End of story.  Except...

Story No. 4 is just beginning.  I'm still at Dr. C's office - thankfully they did not give me the boot and I continue to appreciate Dr. C - and I'm not going to bore you with the whole story, except to say that another nurse practitioner in Dr. C's office has recently recommended me to yet another (in my mind) premature invasive procedure for what appears to be a pretty minor gynecological issue.  I might even need it, for all I know, but I can tick off very clear reasons why it is not the next logical step in diagnosis.  It is a bitch to be an educated, self-advocating patient, and despite everything you read about being a participant in your own care, in my experience medical practitioners don't prefer that kind of participation.  I think they simply mean you to participate by actually doing what you're asked to do - whatever that is.  And so I've decided I need to consider other pathways.

So just to ease your minds, I've made an appointment with the gynecologist who delivered my daughters a million years ago and even her nurse practitioner will probably have seen more problems like my current problem than the internist's nurse practitioner.

But I have also decided to make a serious exploration of a medical system that does not include in its focus an over-reliance on available medical testing equipment, a protocol developed by insurance companies, and a strong affinity for doing whatever invasive thing will cover one's arse for liability purposes.  Now please don't get me wrong.  I think that medical professionals are pretty much forced into this system and it's become a way of life.  It's become the American medical experience.  But statistics tell us there are something like unnecessary 130 tests and procedures that are routinely used, to the tune of $6.8 billion a year.  Notice, they haven't even tried to measure it in terms of patient anxiety costs.  Sisters and brothers, I am tired, tired, tired of being part of that routine.

Now, with all that build up, maybe what I'm about to share will make some sense.  The alternative medical tradition does not try to pinpoint a primary underlying cause for a symptom,but rather looks at symptoms in the totality of the person's life, physical, emotional, psychological, environmental.  Here is an example of what I am talking about:  The alternative medical tradition understands that a peptic ulcer may arise from one of six unhealthy situations, and if the ulcer is treated with a common western treatment for ulcers, but the actual underlying situation is left diagnosed and untreated, the problem will simply re-manifest one way or another.  Here is a description of the alternative medical system I have decided to explore:

"The...physician...directs his or her attention to the complete physiological and psychological individual.  All relevant information, including the symptom as well as the patient's other general characteristics are gathered and woven together until it forms ...a 'pattern of disharmony.' The pattern of disharmony describes a situation of 'imbalance' in the patient's body....Diagnostic technique does not turn up a specific disease entity or a precise cause but renders [a] workable description of a whole person.  The question of cause and effect is always secondary to the overall pattern...The...method is based on the idea that no single part can be understood except in its relation to the whole. A symptom, therefore, is not traced back to a cause, but is looked at as part of a totality.  If a person has a complaint or symptom, [the methodology] wants to know how the symptom fits into the patient's entire being and behavior.  Illness is situated in the context of a person's life and biography. Understanding that overall pattern, with the symptom as part of it, is the challenge..."

That paragraph should ring true with anyone familiar with systems theory.  It comes from a book by Ted Kaptchuk, "The Web that has no Weaver: Understanding Chinese Medicine," considered to be the best entree into traditional Chinese medicine for the westerner.  What resonates for me about Chinese medicine is its focus on the whole person.  Although Dr. Marcus Wellby used to take an approach similar to the one outlined above, today's doctors are pushed more and more away from using their experience and instinct alongside science, limited by insurance companies to a strict scientific approach.  Compare the concepts above to the primary methodology of western medicine, which Dr. Kaptchuk explains,

" primarily concerned with isolable disease categories or agents of disease, which it zeroes in on, isolates and tries to change, control or destroy.  An ontologically circumscribed entity is the privileged ideal of the system.  The western physician starts with a symptom, then searches for the underlying mechanism - a precise cause for a specific disease.  The disease may affect various parts of the body, but it is a relatively well-defined, self-contained phenomenon.  Precise diagnosis frames an exact, quantifiable description of a narrow area.  The physician's logic is analytic - cutting through the accumulation of bodily phenomena like a surgeon's scalpel to isolate one single entity or cause."

In other words, practitioners of Chinese medicine don't try to isolate the thing gone wrong inside the body.  They look instead to the person - to the whole person, in context of her life and environment. While the modern Chinese physician doesn't ignore the modern tools available for diagnosis and treatment, she would never have had to rely solely on a blood test to diagnose a patient's adrenal failure and consequently, would have recognized the incompatibility of the blood result with the rest of the patient's circumstance.  She would never have kicked a patient out of her office because she was not allowed by her insurance carrier to treat the whole patient.  She would never have seen one notation by a radiologist who has not visited with the patient to be a definitive determinant of next treatment steps.

And so... down this path I go.  Anyone want to come with me?  

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