The Disconnect

Today’s theme is “I want to change THIS about healthcare…”

The word that first came to mind for me was disconnect. At a time when the greatest effort ever is being made to involve patients, integrate specialties and improve the health care process for all Americans, I still can’t help but feel there is a giant boulder in the way. Or some kind of undercurrent — like we’re buzzing along under the impression that all is well but not quite recognizing a key factor to success.

As always, it’s the little things that make me feel this way. My primary doctor, who technically should be my gatekeeper to care and coordinating my health, will no longer write prescriptions for drugs he isn’t doling out. I was so proud of myself for scheduling an annual visit where I could streamline care and not “over inflate” my copay use by seeing specialists. But my primary would not write refill prescriptions for me. Plavix? “Well, you’ll have to ask your cardiologist about that.” Eye drops? “Oh no, that’s up to your ophthalmologist to refill.” And so on.

Whatever happened to coordinating my total care? The primary doc’s role now seems truly to be “concierge” in the guest services capacity. My visits now consist of blood work followed by his recommendation to see a laundry list of specialists.

So if that’s the way it’s going to be, my primary doctor now holds only one purpose in my life: antibiotics for the occasional sinus infection.

Because I get the sense we don’t have a partnership any more. Rather than waste a copay on him telling me to see a specialist, I’ll just ramp up more health care costs for Carefirst BC/BS by seeing specialists at my own discretion. I’ve met my astronomical deductible, so what the heck — why not?

It’s a shame. We may have a hard working team of health care providers, insurers and advocates, but without a good coach, we can’t win. We need engaged, appreciated primary care physicians to lead patients to victory — even the smallest ones — in health care.

# f-Patient

I realize there is a lot of huzzah and hurrah out there about the e-Patient — especially among those who have the skill or leisure to be well-connected to social media. At times, I believe I’m one of the empowered, engaged fold. But what about the f-Patient? The well-meaning, diligent user of social media who finds herself inexplicably … well, the most accurate way to put it is … “f’d” by the health care system?

In a one-night stay at my beloved local hospital, I found myself – seasoned cardiac patient that I am – misconstrued as a narcotics monger, migraine patient, and generalized neurotic, gaseous female.

I had my smart phone. But, no charger. As the hours progressed into double digits and I realized my predicament, the best use of my phone was to call my internist and cardio, because no one at the hospital had bothered to do so. I suppose I could have accessed the Internet at some point and drained battery, but to what end? Would it have furthered my progress? Doubtful. And besides, I was preoccupied with my roommate’s ongoing constipation/diarrhea issues on the other side of the curtain.

So, I battled my way through that hospital stay by enlisting the nurse, technician, charge nurse, and eventually, the cardiologists, to get some attention and eventual data. Upon returning home, bruised, battered, and covered in residual EKG/telemetry stick’em, I realized my truth: f-Patient. Or at least until I was charged up and had time on my hands to google, facebook and tweet.

E-doctor? Are You There?

Where the heck is the e-doctor? I’m slogging away trying to be an e-patient, among other things, but where is the doc who will meet me half way?

If you’ve been following spontaneous coronary artery dissection (SCAD) research developments, you know that fibromuscular dysplasia (FMD) is a recently confirmed associated condition. Perhaps even a cause. Time will tell.

Well, let’s just say I have kids. And one of them dissected an intestine after a routine GERD workup when he was five, and spent three weeks in the hospital and a year transitioning back to solid foods. Then, let’s pretend that he had excruciating “abdominal migraines” for two years and began classic migraines at age seven. As his mom, with a history of SCAD and a healed carotid dissection from suspected FMD, I’d probably be doing my job to get said child evaluated. Right? I’ll take that as a yes.

So guess what his MRI/MRA order read? Go on. You will never get it.

It said, “family history, headache with cough.” And this is at Children’s National Medical Center…in our nation’s capitol. No mention of artery dissection. No mention of FMD. Nothing.

How can things get so flippin’ discombobulated? How can I trust that the report I received is accurate? Especially since the mom in charge (me) was so hysterical that she took her child to a neurologist for “severe headache, increasing with cough.”

The report says he’s fine. I wish I could believe it.