Archives for category: epatient

Granddad Bass OriginalYou are probably familiar with the African proverb “it takes a village to raise a child,” popularized in America as the title of Hillary Clinton’s book in 1994. Over the years, it began to take a village to do most anything — yet a cliché stops being a cliché the moment our experience speaks to its meaning.

Recently life taught me it DOES take a village. Birth, growing up, survival, death – it all takes a village.

A few weeks ago, my 97 year-old grandfather fell for the last time doing things his way (let’s just say he insisted on standing and letting go of his walker). He broke his pelvis, collarbone, and elbow (again). While in the hospital, he developed internal bleeding and sepsis. By the time we arrived, his speech was unintelligible, but he could nod and shake his head to communicate. (The last words we understood were those when he saw my mom, greeting her one final time with his trademark, “Hey babe.”) All things considered, our last few days together were good ones. When he was awake, his eyes were bright. He laughed at a joke. But severe seizures had set in and it was time to make the decision.

I was astounded by the care and concern of each person we met – nurses, technicians, respiratory therapist, transport staff, hospital social worker, and internist. In their own ways, they gently urged the right thing for him, which was inpatient hospice and palliative care. In hospital, they were doing their jobs and treating symptoms – even doing a CT scan to try to determine the cause of his seizures. In hospice, he would receive pain medication to control the seizures and peacefully pass.

The hospice staff each were angels personified. I could have never imagined that such a place existed and that people devoted themselves to the delicate transition between life and death. I brought my grandmother to spend two afternoons with him, and she held his hand reliving their life of more than 77 years together. And then he slept.

Granddad’s experience sounds almost like the perfect way to go. Yet how many of us will be so fortunate? He was a cat with nine lives, and toward the end, was helped by my mother, my grandmother (who, even at 95, doted on him), the staff of a wonderful assisted living facility, rehab therapists, a part-time caregiver, and ultimately strangers – the staff at the hospital and hospice. I believe it is a tribute to him and all that he did for others in his lifetime that he lived so long and touched so many.

Today, we are fortunate that the village extends to the virtual world. If my grandfather had been born in 1966 instead of 1916, perhaps when he had his first heart attack at age 46, he would have told his family instead of keeping it a secret until his second one decades later.

In family lore, his “spell” was nerves, and the doctor advised him to find a hobby. In true dairy farmer fashion, he decided to fish. Never mind that he had no place to fish. He dug out not one, but two ponds on his 80-acre farm and stocked them with bass and bluegill. Some of my fondest memories are of fishing with my grandfather. It took until I was 28-years-old to finally catch a bass, and he was so proud of me. It was 6 pounds 10 ounces, rivaling the 8 pounder he hooked when I was small.

If his heart disease happened today, maybe he would go online to explore what to do to prevent future heart attacks. Or maybe, his mystery heart attack was a spontaneous coronary artery dissection, or SCAD, like mine. Today the technology exists to know the answer. In Pimento, Indiana, circa 1962, the doctor handed him unidentified prescription pills in a pocket-sized brown paper bag with instructions written by hand. Everyone did what “Doc” said, even though they weren’t exactly sure why. His advice to go fish, though, you can’t argue with that.

Granddad — your village misses you!

I speak for those who can’t speak tonight. I speak for those who’ve been brushed under the rug by slight-of-hand. I speak for the dead.

We’d all like to believe that if we control our risk factors, listen to our bodies, and call for help when in need there would be no heart disease. No heart attack. No stroke. No death.

Yet we all know the truth, which is women do the right thing every day and die anyway.

Whether from congenital defect, unmanageable risk factors, or un-researched biological boogeyman, women die from heart disease every minute of every hour of every day because we haven’t devoted the attention, research dollars, or sweat equity to keep them alive.

Don’t insult my intelligence by telling me that awareness of heart disease will keep me alive. I literally could teach a course on Spontaneous Coronary Artery Dissection (SCAD) to med students today and die of a second heart attack from SCAD tomorrow because the data hasn’t been funded to explain my disease or prevent my death from it.

Talk to me about answers. Show me cradle-to-grave assessment, risk management, and care. Act upon my crisis.

Women die every minute of every day because death from heart disease isn’t yet lucrative or sexy enough for our health care and research establishments to act.

I’m fighting hard until I Go Dead for Women.

The boys and I went to a movie on Friday. And it was so efficient!! And I kept thinking, “if AMC theatres can do it, why can’t Carefirst Blue Cross Blue Shield?”

Our “appointment” with “Wreck-It Ralph” was arranged electronically. In a very harried 15 minutes on my computer at home, I activate our frequent movie viewer card (we don’t see all that many) and purchased our tickets online. The frequent viewer card allowed me to waive the processing fee. It also allowed me to show up at the Swamp Fox 22, bypass the day-after-Thanksgiving lines, swipe my card at a kiosk to generate tickets, and proceed to the snack area where I received YET ANOTHER privilege in reduced prices. And then I enjoyed a movie on top of it all.

So my proposition is this: Carefirst knows everything about me; I even have a Carefirst debit card that can retrieve my high-deductible info in micro seconds.

Explain to me why Carefirst and my health care providers require me to repeatedly explain myself and my health care information to them? Why can’t it all be on my card (since most of it is already)? Just think: one swipe, and your medical history, benefits info, and payment summary could be transferred.

You’d receive efficient, appropriate care, and still have time for a movie.

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.

Arley, meet Henson.

A funny thing about human nature. From birth, we are driven by the uniqueness of our selves; the sense that we are “the only one” (some more afflicted so than others, unfortunately). But in the most healthy way, feeling special or one-of-a-kind buoys us through the sandlot, the purgatory of prepubescence known as middle school, and on through college where we truly test the boundaries of self.

So what happens if you add a rare disease or unique medical experience into the picture? This uniqueness of self becomes magnified, in many ways, to a terrifying degree. They are the definition of “alone,” these rare disease diagnoses.

I experienced that degree of aloneness when diagnosed with spontaneous coronary artery dissection (SCAD). But I was convinced I was not the only one. Despite doctors’ assurances, I just knew I was one of many. Whether this was my upbringing by solid mid-westerners or poor self-esteem at the time, regardless, I just knew I wasn’t “all that.” This acceptance (or perhaps, defiance) is what started the search to find others, and I’m so thankful I did.

Today, more than 330 SCAD survivors are connected via the WomenHeart online community and facebook. But this tally doesn’t include dozens who have approached Mayo Clinic directly to participate in the SCAD clinical trials underway there.

In a happily-ever-after twist — as my dog, Arley, recently learned — I’m not all that. I’m one of many, and very grateful to be so.

In a nod to the adage “if you can’t say something nice,” I’ll be brief. A month ago, I applied and was accepted to participate in a taping of the Dr. Oz Show. The several staff I spoke with over four days assured me that I would go back stage, meet Dr. Oz, talk with the producer, and either tell the story of my widow-maker heart attack or be allowed to comment from my seat in the audience.

It was an dream opportunity: a nationally televised discussion of heart disease in women that would touch on spontaneous coronary artery dissection (SCAD), an under-diagnosed form of heart attack that debilitates and kills an unknown number of healthy people every day. Yet neither you, your neighbors, or your doctor know about it.

Unfortunately, here’s where the “…don’t say anything at all” part comes in. Literally.

The show did a tremendous job with the critically important topic of women and heart attack. The animations were incredible, Rosie O’Donnell was gracious and riveting as she shared her story, and all the key information about preventing heart attacks was reviewed. But, without my story, the discussion had a gaping hole. What do you do if your heart attack can’t be prevented?

With SCAD, there are no risk factors to monitor. It doesn’t show up in blood work. Our cholesterol numbers are great, our blood pressures low, and our overall fitness considered healthy. Some SCAD survivors, in fact, are bona fide athletes. Many of us have recently given birth, which is kind of a triathlon in it’s own right! So to present to the world that the only heart attacks that matter are those that “should be” prevented through habit changes, diet and exercise, is to cruelly dismiss the SCAD population for a cardiac mystery that truly attacks. SCAD does not build throughout a lifetime. It strikes.

Complicating matters, the trend of ostensibly blaming women for their heart attacks undermines the progress that has been made in getting women to take their symptoms seriously and seek care immediately. Don’t we all tend to rationalize unpleasant things rather than meet them head on? If a woman’s heart attack might be viewed as “operator error,” will she listen to her body or try to avoid reality at all costs? In the case of SCAD, flip the view to that of the ER doc, who the majority of the time, will NOT perceive a younger, fit female presenting with heart attack symptoms as a cardiac patient.

So how can we work to truly prevent ALL heart attacks? Through research. And that is the message I’d hoped Dr. Oz would help spread, for the benefit of cardiovascular disease patients across the spectrum. Let’s stop worrying about putting “a face” on heart attacks and get to the root causes of why women are treated differently at our ERs and doctors’ offices, and why women are referred to cardiac rehab at a rate of only 20 percent. Let’s understand the psychology of women’s heart health. Let’s learn how genetics play a role in coronary artery disease, and along the way, prevent unnecessary deaths from SCAD.

Each research effort would inform the others. And that’s not smoke and mirrors.

Through Mayo Clinic’s ongoing SCAD clinical trials, the team has already uncovered information to improve treatment. At the AHA2012 conference on November 5, Dr. Marysia Tweet presented findings that the pristine arteries of SCAD patients tolerate a stent less successfully than an artery with atherosclerosis. To read the abstract and for more information on SCAD, check out: http://www.facebook.com/pages/SCAD-at-Mayo-Clinic-Spontaneous-Coronary-Artery-Dissection/440175972694809

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.

And really, what doesn’t? Whether it’s too much or too little of one thing. A lack of awareness or addiction to something else. Or, just flat getting smacked down by the universe…run over by a truck or struck by lightening, for example. One day, it’s our time.

But until then, what doesn’t kill us makes us stronger.

First apple picking @ 18 months

This post is in honor of my SCAD baby. You may not know what that means, because SCAD survivors are as yet a small, concerted group. SCAD stands for “spontaneous coronary artery dissection” and this under-diagnosed form of heart attack almost took my life after the birth of my second son. He, no doubt, is the strongest person I know.

Today he began 4th grade. When he was 7 weeks old, I nearly forgot he existed.

On that day, I was having a heart attack. An inexplicable heart attack at age 38 from SCAD. At that moment, I knew I was a mom, but the details were fuzzy. I was saying good-bye.

My mother was there (thank God), my husband was leading me down those cussed 13 steps of our house for the second time in three days to run red lights to the ER, and … I said good-bye. That sounds so pedestrian, but to be fully prepared to cash out at 38 with a 2-year-old and nearly 2 month old — both beautiful and off the charts — is nothing you can imagine or appreciate. I died that moment.

But my children resurrected me. Those red curls and green eyes of my first born. The white cotton top and deep sky blue eyes of my second. They drew me back.

Over time, we became the team that we are today. I am fortunate for the family support that kept us afloat. Yet to say it was hard, brings me to tears. The lowest low was to hear my SCAD baby at age three lock me with that steely gaze and say of his brother: “Why does he have a mommy and I don’t?” I assured him I was his mommy, but he shook his head resolute. “You’re not my mommy.”

What doesn’t kill you makes you stronger.

Please learn about SCAD. Save a life, save a family.

http://www.facebook.com/pages/Spontaneous-Coronary-Artery-Dissection-SCAD/229928783729665

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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.