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.

High Country News Classifieds
  • EXECUTIVE DIRECTOR
    Job Title: Executive Director Reports To: Board of Directors Compensation: $75,000 to $80,000, plus generous benefits and paid leave. Funding for relocation expenses available. Classification:...
  • WATER DIRECTOR
    Applications will be accepted on a rolling basis. Application review will begin on April 2, 2021 and will continue until the position has been filled....
  • CLIMATE JUSTICE FELLOW
    High Country News, an award-winning magazine covering the communities and environment of the Western United States, seeks applicants for a climate justice fellowship. The fellowship...
  • VIRGINIA SPENCER DAVIS FELLOWSHIP
    High Country News, an award-winning magazine covering the communities and environment of the Western United States, is offering a fellowship for early-career journalists interested in...
  • COLORADO WILD PUBLIC LANDS VIDEO CONTEST
    Please submit your video of 30 seconds or less, taken on public lands, to [email protected] by May 15th for a chance to win in one...
  • WMAN NETWORK COORDINATOR
    WESTERN MINING ACTION NETWORK (WMAN) CONTRACT OPPORTUNITY CLOSING DATE: Feb. 19, 2021 WMAN is seeking a team member to coordinate the various network activities to...
  • FRIENDS OF THE INYO IS HIRING TRAIL AMBASSADORS FOR THE SUMMER OF 2021
    Friends of the Inyo's Trail Ambassadors (TAs) support the Inyo, Sierra, & Humboldt-Toiyabe National Forests and other partners by providing positive public service, outreach, interpretation,...
  • LAND & CABIN ON CO/ UT LINE
    18 ac w/small solar ready cabin. Off grid, no well. Great RV location. Surrounded by state wildlife area and nat'l parks.
  • MANAGER PERMACULTURE LANDSCAPE CONTRACTOR
    Permaculture / Landscape Company Manager / Site Lead Red Ant Works, Inc. - 20+ year landscape construction and horticultural care company seeks manager and site...
  • CANYONLANDS FIELD INSTITUTE
    Field seminars for adults in natural and human history of the Colorado Plateau with lodge, river trip and base camp options. Small groups, guest experts.
  • COMMUNICATIONS MANAGER
    San Juan Citizens Alliance is looking for a passionate, dynamic, organized, and technology-savvy communications professional to help grow our membership and presence in the Four...
  • ENERGY AND CLIMATE PROGRAM ASSOCIATE
    San Juan Citizens Alliance seeks an Energy and Climate Program Associate to focus on public outreach, education and organizing to advance campaigns to mitigate climate...
  • REAL ESTATE SPECIALIST
    This position provides professional real estate services and is responsible for managing and completing real estate projects utilizing a project management database that is designed...
  • WILDFIRE MITIGATION SPECIALIST
    The Wildfire Mitigation Specialist is responsible for delivering wildfire risk mitigation information, recommendations and programmatic resources to wildland urban interface homeowners, community members and partners....
  • DEVELOPMENT POSITIONS
    Thorne Nature Experience is hiring for a Development Director and Senior Individual Giving Manager. Individuals will work collaboratively with Thorne's Executive Director to develop and...
  • SENIOR PROGRAM MANAGER, LANDSCAPE CONSERVATION & ENERGY
    The National Parks Conservation Association, a 100-year-old nonprofit advocacy organization and the nation's leading voice for national parks seeks a Senior Program Manager, Landscape Conservation...
  • BACKCOUNTRY AND FRONTCOUNTRY STEWARDSHIP CREW MEMBERS
    The San Juan Mountains Association (SJMA) is hiring a crew of ambassadors to work in partnership with the U.S. Forest Service to educate visitors on...
  • EXECUTIVE DIRECTOR, NATURAL HISTORY INSTITUTE
    The Executive Director is the chief executive officer of the Natural History Institute (NHI). The Executive Director has broad authority to lead and manage the...
  • EXECUTIVE DIRECTOR AT FRIENDS OF CEDAR MESA
    - The Land, History, and People of the Bears Ears Region - The Bears Ears and Cedar Mesa region is one of the most beautiful,...
  • WESTERN NATIVE SEED
    Native plant seeds for the Western US. Trees, shrubs, grasses, wildflowers and regional mixes. Call or email for free price list. 719-942-3935. [email protected] or visit...