Don’t Ever Let Your Guard Down in Chronic Town

November 19, 2010 at 2:02 pm (Uncategorized)

The Guru didn’t waste time on formalities or niceties.  He rifled through the pages of lab work and tests results from the previous six months, and announced, “You need to get a defibrillator implanted.”


Here I’d thought that my semi-annual visit to my sarcoidosis specialist in Ohio would be nothing more exciting than a check-up.  Maybe he’d even give me the green light to start cutting down on the toxic cocktail of drugs I take for my chronic, systemic sarcoidosis.  Instead, he reviewed the report from the Holter monitor (a portable device that measures the heart’s electrical functioning for a day or two) I’d brought with me, asked me about some of the noteworthy heart-related symptoms I’d experienced in the past few months, and delivered his verdict.

I had known that something was wrong.  That’s why I had badgered a local doctor for the Holter monitor in the first place.  For the past few months, I’d felt like my heart was skittering around in my chest.  Sometimes, it was nothing more than a skipped beat or two.  Other times, I’d feel my heart accelerate, as if I’d downed a whole store’s-worth of Starbucks espressos.  These episodes made me dizzy and bathed me in cold sweat.  Twice I passed out.

My heart’s antics were unfortunately familiar.  I’d experienced the same set of symptoms—except the passing out—in 2004, when I was first diagnosed with cardiac sarcoidosis.  Back then, the standard treatment for cardiac sarcoidosis was high doses of prednisone.  The question of whether to implant defibrillators or pacemakers was less settled.  If someone had life-threatening spells of ventricular tachycardia, there was no debate about whether to implant the devices.  But with someone like me, who presented with relatively minor rhythm abnormalities, most specialists took a wait-and-see approach.  It was thought that if a cardiac sarcoidosis patient could be induced into deadly ventricular tachycardia during a heart catheterization, then a defibrillator should be installed immediately in the cath lab.  For people like me—who had cardiac sarcoidosis, minor rhythm abnormalities, but could not be induced into lethal heart rhythms—the experts advocated monitoring the problem.

I learned in the Guru’s office that standard procedures have changed since 2004.  The idea that deadly heart rhythms could be predicted in the safe environment of the cath lab turned out to be hooey.  A few of the people “cleared” by the cath lab and sent home like me without defibrillators had the misfortune of up and dying.  Now the experts say that anyone with cardiac sarcoidosis who has minor rhythm abnormalities should have defibrillators (and sometimes also pacemakers) implanted as soon as possible.


The local cardiologist concluded that my most recent Holter monitor was within the realm of “normal.”  The Guru disagreed.  In a 48-hour period, the monitor detected over 2,000 premature ventricular contractions (PVCs), which are extra, abnormal heart beats that originate from the heart’s pumping chambers (the ventricles) instead of from the where they typically start—the sinoatrial node.  The local cardiologist would have been right if I were a healthy 39-year old.  Then the occurrence of a few (or even a few thousand) PVCs wouldn’t be cause for alarm.  But, a couple thousand of these abnormal heart beats in someone with a history of sarcoidosis in the heart aren’t at all normal. They indicate an underlying problem with my heart’s electrical functioning.  Most likely, granulomas—the blobs of white blood cells that sarcoidosis forms—are interfering with my heart’s normal pathways.  The PVCs reveal a broader malfunction with my heart’s electrical system—one that might prove to be harmless, but one that might result in sudden death.

As much as I wish I’d gotten better news from the guru, I won’t ignore his advice to get a defibrillator implanted.  Sudden death is something I’d like to avoid.  I travel all the way to Ohio twice a year to get an expert’s take on a disease that too many other health care practitioners don’t fully understand (or don’t bother to keep up on the latest guidelines).

I’m home from Ohio.  I have set the ball in motion to get the defibrillator, scheduling the first appointment with the first doctor in the chain of referrals that will end in finding the electrophysiologist who will implant the device.  I am channeling my anxiety about the surgery into the mostly bureaucratic process of finding the right surgeon.

Whenever my heart skips a beat, I tell myself not to worry, that it’s normal.  And then I remember that it’s not.

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Keep Your Sickness Out of My Hospital

November 11, 2010 at 2:30 am (Uncategorized)

The grey-haired woman looks up from her roost behind the counter, and glares at me. She’s seen me in the hospital gift shop quite often. In fact, we’ve joked in the past that my health insurance should cover my purchases here—a little “retail therapy” to get me through my chemotherapy infusions. There’s no joking around today, though. Her eyes are flinty, suspicious chips.

“What are you doing here like that?” she spits out.

Involuntarily, I look down, to see what’s so offensive. Do I have toilet paper stuck to my shoes? Did I unknowingly change into a hospital gown that is flapping open to reveal my bare ass? Or did I spill food all over myself when I was eating my lunch an hour earlier in the Cancer Treatment Center (CTC)?

No, no, and no. I am fully dressed in what I think are stylish street clothes. I mean, come one, I’m decked out in my new red clogs today. I couldn’t get snazzier.

She’s persistent with her hard stare. I follow her gaze and see what the problem is. The pump. I’m literally attached to this automatic drug pump by a tube stuck into my chest port. It is unwieldy and tall, and come to think of it, rather loud. It is wheezing and clacking as it delivers saline and Rituxan into me from two hanging bags of liquid. For one horrified second I think the clerk must believe one of those bags is a urine collector. But they’re hanging above me, and they’re obviously clear fluids.

I decide that she must be annoyed because one of the wheels on my pump is loud and squeaky. It’s like pushing an out-of-alignment grocery cart through a silent supermarket.  Squeak, squeak…SQUEEEAAAK.  I’ve noticed people staring at me whenever I pass them on my stroll through the hospital from the CTC where I’ve been getting my infusion, through the cafeteria, the recently remodeled front lobby, and now the gift shop.

The woman has come out from behind the counter and is following me around the small gift shop. I’m in the mood to buy something. As always, this place has surprisingly cool jewelry, handbags, scarves—along with stuffed animals, get well cards, and baby gifts. When I was getting a nasty chemotherapy drug called Cytoxan dripped into me every-other-week for two years, I’d sometimes make it through an infusion by promising myself a stop in this shop and a pair of dangling earrings or a stone pendant necklace.

The shop is crowded with merchandise, but not so that I’m in danger of knocking one of the angels off the shelves or tipping over a card rack. Surely, the woman doesn’t think I’m going to sneak an item into one of the purses I’ve bought there. Doesn’t three years of patronage give me some credibility?

She stays closely behind me. I turn my head sideways and see her flapping her arms, like a bird that cannot fly. Is she shooing me away? I watch more closely and see that instead it’s almost as if she is circulating clean air onto the shelves I pass. She’s behaving as though I might be contaminating her merchandise by walking by it. This is how I imagined medieval villagers must have treated lepers or how I might react if someone with Ebola were strolling through my house. She must know that I’m not contagious, though. Most likely, she believes I have cancer, since we’ve talked several times about my chemo. But neither cancer nor sarcoidosis is communicable.

Being the contrarian I am, her obvious disdain of me makes me dig in my red heels. I am extra careful to put back each item exactly as I found it, but I am just as diligent to inspect everything in the store. I lift up each tchotchke—the ceramic angel figurines, the plastic rainbows, the “To My Mother” plaques— and examine it as though it might have a cure for my disease hidden within. I open up every card on the rotating racks and read the treacly poems about sunsets, tides, and angel wings that are supposed to express sympathy and a whole batch of different clichés for getting well. I hold the necklaces up to my face in the mirror and then try to find earrings to match each one. I pet the stuffed elephants and pink bears before contemplating the shelf of what must be the complete set of Chicken Soup self-help books. As I try to figure out whether I should find it worrisome that the hospital stocks several copies of Chicken Soup for the Prisoner’s Soul, my escort stays with me. I’m in there so long that my medicine pump begins to emit a string of piercing beeps to warn that its battery is running low and that I should plug it back into an outlet.

Turning from Chicken Soup for the Pet Lover’s Soul to see if I could silence the frantic pump, I inadvertently glance at the woman I’ve been studiously ignoring. She flinches and then blanches before gasping and then retreating back behind the counter. Her horrified reaction—as if I’ve just taken a dump in the middle of her store—finally eases the gears of my thoughts into a place, and with a click, I get it. I’m not supposed to be out here, in the glossy front of the hospital. I have broken out of containment. Sick people are to stay in their beds—or, in my case today, in their infusion recliners—not venture onto these slick marble floors.

It’s taken me a while to grasp this. It’s almost embarrassing that I was puzzled by the reaction I got from nearly everyone I walked by with my squeaking, humming pump on my walk from the CTC to the hospital’s main lobby. My route took me through the recently-remodeled cafeteria. It’s a lovely, open area. I missed the lunch rush, but there were still several groups gathered at tables. They were predominantly obvious medical personnel or hospital staff. At one table, what looked like a surgical team—each person decked out in blue scrubs, blue shoe covers, and poufy blue hats—lingered over plates smeared with the remnants of food. What’s the point of sterile garb if you’re going to get enchiladas on it? And if you’re done slicing and dicing for the day, wouldn’t you at least take off that ridiculous hat? I’ll admit, I stared at those guys. But they stared back, just as openly and incredulously—as if I were the one capering about in a silly hat. However, as I later realized, everyone I passed gaped at me—the other diners, the woman in charge of the espresso cart, the people sitting in stiff arm chairs in front of the faux fireplace, and the staff at the main desk. It’s true that the wheel on my pump was squeaking, but it’s a hospital. I wasn’t that conspicuous, was I?

When I say it took me a while to grasp that there’s an unspoken but very evident divide in hospitals between the public frontispiece and the medical areas, I’m not just talking about my walk from the chemo room to the gift shop. I’ve been to a lot of hospitals—so many, in fact, that I’ve lost count. I should have carved notches in my sick beds to keep a proper tally. But I made the mistake of trusting my memory to keep track of my hospital visits. Bad idea. After wracking my brain and flipping through old files, I came up with a rough estimate. I’ve been admitted to at least 20 hospitals.  And that’s a conservative count.  (I followed arbitrary—but consistent—criteria to compile my list of hospitals.  I didn’t want to inflate my count by including hospitals or medical facilities where I was sent for just a test or two.  I couldn’t get the sense of a hospital if my only experience with it was getting a chest x-ray or a cut sutured. To get on my list, a hospital had to have a) kept me overnight; b) performed surgery on me; c) admitted me into its emergency room and performed a significant procedure on me; or d) performed three or more diagnostic tests and required visits with two or more doctors with offices inside the hospital.  Under these guidelines, my visit to a Louisiana emergency room to have a nasty gash from a bicycle crash evaluated would not make my list, but my visit to a Cheyenne, Wyoming, emergency room to have an MRI and spinal “patch” performed did.)

That’s quite a few waxed hallways, adjustable beds, poorly-fitting gowns, and big-haired bureaucrats for my 39 years.

Even before I became chronically ill—and seriously upped tally— my husband and I used to joke that I should write the definitive guide to American hospitals.  I have always had a knack for the catastrophic illness or major injury when I’m out of town.  I’ve even had the same surgical procedure in two different hospitals, two thousand miles apart.  Then I got sarcoidosis.  Much of my six-plus years in Chronic Town have been spent at hospitals all over the country in search of the best care for my sarcoidosis.

Just picture the (imaginary) blurb on my (imaginary) hospital book:

From rural Montana emergency rooms to major metropolitan medical centers, Rebecca Stanfel has seen—and felt—it all.  Now, for the first time, you can get the inside scoop on the Mayo Clinic’s MRI machines and New York City’s only monosyllabic neurologist.  Along with an education in hospital lingo, you’ll get hospital reviews and check-lists for signs that you should walk right out of that walk-in clinic.  Are you stuck in Denver, wondering where to get a heart catheterization? Or looking for the nicest pulmonologist on the East Coast?  You can count on Rebecca’s insider experience.  She’s had over 20 CT scans, 20 MRIs, 15 echocardiograms, 5 stress echocardiograms, 5 heart catheterizations, 20 rounds of pulmonary function testing, and one very bizarre heart test in Denver where they mock crucified her (with Velcro holding her wrists down, mind you, instead of nails) and then hung her upside down while performing an EKG—not to mention 3 years of chemotherapy, a dozen surgeries, and so many neurological exams she thinks she should be certified to administer this test to her loved ones…

So much for my self-proclaimed insider status.  How could I have missed the great divide that keeps sick people out of sight in hospitals?  In my defense, I spend most of time in hospitals being, well, sick.  So, I’m usually not lingering in the lobby or hobnobbing with the receptionists.  I’m back in rooms off corridors where the paint is chipped and the carpet is scuffed.  I’m either seeing a doctor, getting a test, or getting a treatment.  Not only am I out of sight, then, but I’m feeling nervous or crummy.  I don’t typically have the luxury of pondering the allocation of hospital fundraising between remodeling and giving staff pay raises. But that’s one of the things about getting Rituxan–I have more time to contemplate.  Rituxan is a chemotherapy drug that was designed for lymphoma, but has more recently been used for rheumatoid arthritis and systemic sarcoidosis.  It has helped my neurosarcoidosis immensely.  It also has fewer significant side-effects than other chemotherapy drugs I’ve tried.  Most notably, it doesn’t cause vomiting or nausea as do Cytoxan and methotrexate.  But my body still doesn’t like it.  The drug contains a bioengineered mouse protein—in essence, a foreign entity, which my body responds to with a quasi-allergic reaction.  So I have to take large doses of Benadryl before each infusion and the nurses drip the Rituxan into me slowly.  It usually takes between three and seven hours to complete a treatment.

Fifteen or sixteen hospitals ago, I might have chafed at having to spend a whole day getting mouse juice and saline solution dripped into me through a mechanical pump.  But after 20 months of Cytoxan, I know how lucky I am to have these long, languid days of Rituxan, when the worst I have to contend with is Benadryl-induced sleepiness and boredom.  After one day of trying to work on my lap-top when I was too sleepy from the Benadryl to do much more than re-write a sentence sixteen different ways, I learned it was wiser to leave my 14-page to-do list at home.  I try to go easy on my cell phone, too.  It’s too hard to ensure that I speak softly enough so as not to irritate the people around me at the CTC.  And who wants to talk to me when the Benadryl makes me sound like I’ve had a few morning martinis?   I might send a few (randomly misspelled) texts, but otherwise, I keep my phone out of sight.  I try to think of my long infusion days as an opportunity.  When else am I going to get hours of free time to doze, read, listen to books or music on my ipod, chat with the eclectic group of people sitting around me, or scrawl in my journal?

The operative word in the last paragraph, though, is try.  While I will never be able to return to the blissful ignorance of all things medical that characterized my life before sarcoidosis, and while I’m all too aware that things can be much, much worse than they presently are, it’s nearly impossible for me to maintain a zen-like acceptance of my reality.  There’s so much I want to be doing now that I’m not dizzy and blind all the time from the neurosarcoidosis.  The hours of my Rituxan infusion are indeed empty and can sometimes be relaxing, but my time there is not free.  After all, I am physically connected to a heavy pump by a tube inserted into my chest.

I usually do a fair job of not dwelling on this sense of confinement.  It helps that I’ve gotten to feel at home in the CTC.  The place is well-worn but filled with love.  It has a genuine hominess.  Cancer survivors have donated quilts and pillows, and the walls display funny or inspirational sayings.  There’s even a tray of cookies in the reception area.   I’ve been going there for three years.  I know which of the vinyl recliners provide the best few of the garden, what to order for lunch from the hospital cafeteria, which of the cookies are my favorite, and never to drink the free coffee.  The nurses at the CTC are the best I’ve known.  They are kind and attentive but also encourage their patients to keep a sense of humor and not to wallow in self-pity.  “No crying in the chemo room,” is one of their mottos—and it works.  I’ve discovered strength I never would have believed was in me.  I’ve also received unexpected support and knowledge from other patients.  The large room has recliners for twenty or so patients.  If you want privacy, the nurses can pull curtains around you or direct you to a corner recliner.  I’ve always liked the sense of camaraderie, though.  No matter how sick the Cytoxan made me or how long the Rituxan takes, I’ve never dreaded going to the CTC.

When I was in this past week, though, I didn’t come properly prepared for a Rituxan infusion.  I wasn’t due for another dose.  It was only because of my upcoming trip to Ohio for my semi-annual consultation with the sarcoidosis expert who oversees my care that my local doctor decided to hit with me an extra round of Rituxan to knock out the vertiginous after effects of a stomach flu I’d had recently.  Expecting to be at the hospital just for an hour or two for my doctor’s visit, I brought nothing more than my Blackberry and my iPod.  An hour into the infusion, I had finished my current book on my ipod, sent text messages to anyone I know with a cell phone, left voicemails for Jay and a few friends, devoured my lunch from the hospital cafeteria, rifled through the office copies of People and Family Circle, and had a long and interesting conversation with a man getting a lymphoma drug in the recliner across from me.  What to do?  I got up, unplugged my pump and wrapped its cord away from the wheels of my IV tree, and headed for the bathroom.  I then wandered out of the infusion area back into the reception room in search of cookies.  “Peanut butter or sugar?” I thought as I gazed at the cookies.  I settled on peanut butter, and was about to scoop up one of the golden, cross-hatched lovelies, when I remembered that I am supposed to be on a diet.  Relinquishing one craving only ignited another.  If I couldn’t have my sugar fix, I wanted caffeine.  The burnt, weak brew they keep at the CTC wouldn’t cut it.  But the cafeteria, just across the hallway, has an espresso machine.  I deserved a latte, right?

I asked the nurses if I could take a stroll over to the espresso cart.  They waved me on my way and went back to completing the mountain of paperwork that treating a single patient involves.  So I set off—past the bedecked surgical team, the gaping staff at other tables, and over to the espresso cart.  The machine was broken.  Rather than return to my boring recliner empty-handed, I decided to press on towards the gift shop.  If I couldn’t get coffee, maybe a scarf or some earrings.  As it turned out, I didn’t get to buy anything that might distract me during the three hours of Rituxan remaining.  When my pump started beeping its loud alarm, I retreated to what I now understood was the sick part of the hospital.

I was reluctant to write about my experiences walking through the hospital while connected to my Rituxan pump.  I like to think of myself as easy-going, and devoting all these words to a few people’s mostly unspoken reaction to me borders on making a mountain out of a molehill.  However, the more I thought about it, the more real the issue became for me.  It turns out that my hospital experience might count for something after all.  At the very least, I know that my local hospital isn’t the only medical facility that has spent a lot of money on improving the appearance of its facade.  In fact, its marble floors, Pottery-Barn-knock-off couches, fountain, and renovated cafeteria are tiny and almost shabby when compared to the big bucks that major medical facilities spend on presenting their first appearances.  For instance, when I got sent to the Mayo Clinic for some sarcoid-related gastrointestinal issues, I was flabbergasted to emerge from one of my appointments to hear the tinkling of a piano.  I looked down into the multi-storied glass atrium and saw a man in a tuxedo playing show tunes on a baby grand.  Later, I saw flyers announcing various “concert times” throughout the day.  At the University of Pennsylvania hospital, the sarcoidosis specialist joked about having to practice medicine in what looked like a Neiman Marcus department store.  Once she said it, I was able to understand why the arty glass and open escalator lobby had seemed so familiar when I walked into it the first time.

“Of course, it’s no Neiman Marcus up here,” she said, as she gestured toward the closet-sized room we were stuffed into.  The exam room was so small that she had to carefully maneuver to conduct her exam.  The lighting was poor, the floor was dirty, and they had run out of paper sheets to cover the examination table.  It’s this distinction—between a glitzy lobby and a dingy patient room—that made me want to write about this.

As a hospital connoisseur, I’m not fooled that a fancy lobby means quality care.  In fact, the opposite sometimes seems to be true.  After our hospital went on its remodeling and expansion binge, it seemed to get tighter and meaner about spending money on what counts—recruiting and keeping good doctors, nurses, and staff; providing these people with the best tools to do their jobs; and making patients as comfortable as possible.  Although our hospital now has a very fine lobby, it struggles to keep its doctors from leaving for better-paying jobs.  Two very fine internists left the hospital to go work at the VA Hospital across town.  One of them is now involved in a nasty employment-related lawsuit with the hospital.  The hospital’s sole pulmonologist left for greener pastures.  The cardiology department seems to have a revolving door.  The same tight-fistedness is evident all around the hospital.  The physical therapy department has to fight with bureaucrats to get enough bandages for wound care.  If a patient needs an ultra high-resolution scan, she’ll have to drive 250 miles to Billings because our hospital hasn’t acquired state-of-the art equipment yet.

The unspoken vibe I felt when I ventured into the “public” part of the hospital as an obviously “sick” person takes on a more sinister cast when I reflect on this discrepancy between image and function.  I don’t need the illusion of upscale care.  I need quality, kind care.  The doctor and nurses at the CTC don’t demand the latest in hospital chic decor.  They do their jobs—damn well—in a room worn by love, death, life, and giving.  It’s a room where sick people feel welcome, even if they’re a squeaky wheel.

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