Going down the road feeling bad

  • Rebecca Stanfel

 

It's the morning after surgery. My chest throbs.  Is it time for pain medicine?  I grit my teeth and roll over to check the clock on the bedside table. Except there is no clock on the bedside table, just a blocky beige phone on an unrecognizable bureau. I remember where I am just before I panic:  I'm in a hotel in Billings, Mont., because the only hospital in my hometown of Helena can't implant defibrillators.

At least I'm used to waking up in pain in hotel rooms. Just after we moved from Sacramento back to Helena in 2004, I went to the urgent care clinic with what I thought was a bad cold.  The doctor took a chest X-ray to rule out pneumonia, and discovered alarmingly inflamed lymph nodes inside my chest instead.  He told me I needed to see a pulmonologist right away. But Helena doesn't have one of those, so I was off to Billings, 240 miles away.

When that pulmonologist told me he needed to biopsy the worrisome lymph nodes, I had to return to Helena, pack up my three-month-old baby -- and get my husband to take nearly a week off his new job -- and schlep back to Billings.  I was relieved when the biopsy showed that I didn't have lymphoma, but a rare autoimmune disease called sarcoidosis instead.  What I didn't realize was that the diagnosis would begin a medical odyssey that hasn't stopped.

My case proved to be severe and chronic, involving my heart and my brain along with my lungs, so I was referred to a hospital in Denver that specializes in sarcoidosis.  After four roundtrips to Denver -- 6,400 miles of driving -- my case proved too bizarre for even the Denver doctors, who sent me to New York to see even more specialized specialists.  I now see a doctor in Ohio who is aggressive in using cancer drugs to treat sarcoidosis.

Over the last seven years, I've had three surgeries, four heart catheterizations, two PET scans, cardiac and neurological testing, and more MRIs than I can count, all away from home.  In that time, we've spent more than $12,000 on medical travel expenses for hotels, airfare, and gas for the drives.  Add the extra expenses for food on the road, and the total balloons to well over $20,000.

Don't get me wrong; I'm grateful to have health insurance that pays for the best specialists in the field, and I love where I live.  I just wish I hadn't been quite so blindsided by the lack of local specialized medical care.

When my husband and I weighed the pros and cons of moving back to Montana, we took into account the smaller salary he'd be earning and the dearth of ethnic food (cons), and the easy access to hiking trails and the lack of traffic (pros).  But we were young and never asked ourselves whether we wanted to live someplace where'd we have to leave home for anything but the most basic medical care.

I doubt we'd have stayed away because of the then-hypothetical prospect of becoming seriously ill.  But the lack of local medical options is a hidden cost of living in the West outside all but a few of its metropolises.

Montana cancer patients commonly travel to Seattle or Salt Lake City for treatment plans.  From Helena, most any heart procedure will require you go to Missoula or Billings (at the closest).  Baffling gastrointestinal problems get you referred to the Mayo Clinic in Minnesota.  Preemie babies get airlifted first to Great Falls and then to Seattle or Salt Lake City.

In the recent health-care debates, little attention was paid to the lack of doctors in rural communities or small cities throughout America.  The expense of medical school means that newbie doctors begin their careers tens of thousands of dollars in debt.  Those opting for specialty or subspecialty fellowships are even further in the red.  So fledgling pulmonologists or electrophysiologists gravitate to Salt Lake City or Phoenix instead of Helena or Sheridan; a specialist in Helena works harder for less money.  The result is that too many communities across the West lack specialized and even some basic medical care.

I'm fortunate to have a supportive family that's able and willing to travel with me, and friends who constantly keep in touch. But I admit it's hard.  Getting sliced open or diagnosed with something scary is tough enough. Then, the extra worry and cost of traveling long distances often makes everything that much harder.

Rebecca Stanfel is a contributor to Writers on the Range, a service of High Country News (hcn.org). She is a freelance writer in Helena, Montana.