How I landed on the other end of the stethoscope

An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women.  I’m one of them.

I launched this blog shortly before January 2011, when I started a new job on the advanced heart failure unit of Sentara Heart Hospital in my home town of Norfolk, Virginia.  Having recently returned to Norfolk after four years at the University of Virginia, two years working for a hospital in the Washington D.C. metropolitan area, and six months exploring San Francisco, I was excited about taking care of patients in the very hospital where I was born. Excited about moving into a condo in the trendy Ghent neighborhood.  About my life as a 26 year old with a dream job, financial independence, and great friends who shared a passion for world travel.

Then BAM!

I woke up one morning with severe back pain and generally felt run down. I went to work anyway, but got much worse by the end of the day. The year before, I had a painful case of shingles that originated in the same area of my lower back. Was this shingles again? I went to an urgent care center and they prescribed an antiviral just in case.  The tell-tell shingles rash never appeared.

But the pain and lethargy persisted – grew worse, actually – and I was out of work for two weeks. Upon return, my boss knew something was very wrong. I was shaky, pale and felt like I couldn’t stand up. Straight back home I went. Little did I know that would be my last day of work.

That was December 1, 2011.

Chasing a Zebra

It would take another eighteen months, dozens of doctors, hundreds of tests and thousands of miles to get to a diagnosis. Many in fact, an alphabet soup of chronic autoimmune diseases. But more on that later.  What happened in the interim and continues today is an incredible journey through the good, the bad and the ugly of our American health care system.

Mostly, it’s been the bad and the ugly.  Not always, but mostly.

What I’ve discovered from the other end of the stethoscope is a jumble of disconnected systems, processes and professionals organized around the business of healthcare and highly disorganized around patient care.  These are just a few examples:

  • In December 2011, I saw my PCP. The symptoms were random: back pain, fatigue.  I saw his notes: “If blood tests are normal we will have to look at psychosocial factors.” WHAT?
  • The PCP referred me to an immunologist, who looked at symptoms, ran tests and referred me to a rheumatologist, who evaluated another set of symptoms, ran tests and referred me to an infectious disease specialist.  Each time, it took 4 to 6 weeks to get an appointment.  Weeks and eventually months went by.
  • A cardiologist, with whom I had worked and trusted, wanted me to see an infectious disease specialist at the local medical school, thinking maybe I had picked up something weird on a trip abroad. She asked a few questions, ran no tests, then asked me if my boyfriend had broken up with me. REALLY?  How completely inappropriate, not to mention traumatic.

I felt like I was at a dead end and no one was listening. Here I was, a nurse who managed peoples’ symptoms for a living – and nothing I did was helping my own mysterious illness. I got tired of telling doctors the same story over and over.  Every specialist viewed my symptoms only through the lens of their particular field of training – not the overall picture – not the whole person.

That’s when I decided to go to the Mayo Clinic. In Spring 2012, I spent two weeks meeting with their physicians and undergoing another battery of tests. It was the first time I felt like someone was taking me seriously. “We’re going to find the zebra that’s chasing you,” said Dr. Hurt, a Mayo Clinic internist.

The outcome?  Mayo Clinic diagnosed the first of what would be many autoimmune disorders and discovered a few other health issues that had been previously overlooked. They also told me that the doctors back home had me on so many medications (some of them contraindicated) that it was difficult to tell which issues were being caused by the illness and which were side effects of the meds.  After ruling out some big things, the Mayo Clinic physicians could only tell me they believed the pain was either idiopathic or post viral, and advised that more symptoms would likely present themselves once I came off some of the medications.

I went home, weaned off the meds, and several weeks later ended up in the ER with tachacardia.  It would be the first of many ER visits. Postural Orthostatic Tachycardia Syndrome (POTS) was now added to the list. Blood pressure problems, temperature regulation problems, bladder and bowel problems. A new round of specialists and tests began.

The zebra was still running.

Fighting My Way Back.

It would be January 2013 before a diagnosis was declared – chronic inflammatory demylenating polyneuropathy (CIDP) and Autoimmune Autonomic Neuropathy (known as autoimmune ganglionopathy). The hunt for a diagnosis came to an end; the long journey to find a cure is still underway.

I get asked this a lot by friends: Sarah, what exactly is wrong? It’s not a simple answer. I’m in constant pain, can’t stand or even sit for very long because of my heart rate and blood pressure problems.  I had to move back in with my parents.  Most of my days are spent in bed, or in doctors’ offices, or in a pool at physical therapy.

I am no longer that excited young adult that once was, but I’m trying to find my way forward to the new and improved me.  Writing this blog is part of the journey.  I hope it helps others with chronic illnesses fighting the health systems that are supposed to help them. And motivates doctors, nurses and other providers to treat their patients as people first.  And pray that the massive industry of health systems, hospitals, pharmaceutical companies and insurers cease the business practices that further harm sick people. In my own case, the time and precious energy it takes to fight the system are precious resources that should be used to fight my disease.

This quote attributed to Eye on Patients (AHA) sums it up:  “Few consumers perceive there to be a planned system of care that operates on their behalf. Instead, they see a confusing, expensive, unreliable and often impersonal disassembly of medical professionals and institutions. If the system is in operation at all, it is seen as one designed to block access, reduce quality and limit spending for care at the expense of patients.”

It makes me sad that I didn’t know this as a nurse.

So I’m going to blog about it.

4 Comments on “How I landed on the other end of the stethoscope

  1. I worked with you one day when you were in so much pain. I’m glad you have answers and a diagnosis. I wish you many days toward being pain free and find that bright future again through your blog.

    • Thanks Patricia! I really miss everyone from Sentara. You guys were so sweet to me that day when I was in so much pain…and in the months to follow. I’ll never forgot it! Thanks for reading.

  2. Hi, Sarah,
    I worked as a health writer for your mother for many years. Soon after I turned 40, I was diagnosed with Type 1 Diabetes and thyroid disease. I later suffered from dysequallibrium and had to retrain my brain so I could walk without the use of a cane. I couldn’t do simple arithmetic and lost words. More diagnoses continued to come from various specialists, but no one, despite lots of traditional testing, could tell me the probable cause. I read and read and came to a conclusion about what was wrong with me, and, soon after, three different people suggested I try an integrative specialist. Without him, I no doubt would probably be in a nursing home. Instead, I continue to write, do yoga, play pickleball. I’m not saying my health is great, but I no longer think my expiration date is any time soon. I take three prescriptons, and use various alternative treatments to keep my cytokines down and to help with mythlation issues. I hope somone can help you find the source of your illness. Knowing that will offer you a lot of other treatment options. Best of luck to you.

    • Terry, thank you so much for reading! And thank you for sharing your story. I have found there are many stories like ours out there. We need to stick together! Thanks again!

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