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After Weeks of Anxiety and a Long Drive ... "Oops"

Two days ago, I wrote about the responsibility I have to my body to stay informed and ask my doctor any questions I may have about the meaning of my lab results. That blog, it turns out, was a timely piece. Just yesterday, weeks after I received lab results that yielded some rather disturbing numbers, I drove an hour to my endocrinologist's office to discuss the findings with her nurse practitioner. Given that some of the findings were abnormal, I was told that it was necessary for me to come in to discuss the results, rather than hearing about them over the phone.

Of course, prior to the appointment, I had been brimming with anxiety for days. The numbers on my lab reports were already showing early stages of kidney damage and diabetes, which, if the numbers were accurate, would have been a reasonable—although not inevitable—occurrence for me, in light of my recent diagnosis of Sjögren Syndrome. 

Forty-five minutes after my hour-long drive, the nurse practitioner entered the examining room. "Do you have a problem? Why are you here today?" she asked. Puzzled, I explained that I had in my hand the voluminous twelve-page results of the tests the endocrinologist had ordered a month earlier, and that I was told to come in to discuss some of the results that were abnormal. The blank look on the practitioner's face was an indication that something was wrong here. I proceeded to show her what caused my concern. As she flipped through the report, she bristled. "Well now, wait a minute ... oops! This isn't your lab test. This belongs to 'P. Sweeney.'" She then grabbed, one by one, four pages of the twelve-page report, folded them up and said, "This isn't even yours. How did you get this?" I told her that her office had faxed them to me. With a nervous laugh and a wave of her hand, she dismissed the incident without an apology. "Oh, well, this isn't even yours. Obviously, 'P. Sweeney' has kidney damage and diabetes, but you only need to address your calcium, protein, and potassium levels, which we can get under control." 

I was horrified and angry. What I had in my possession was someone else's confidential lab results; equally disturbing was that apparently someone else had mine. Before leaving the office, I demanded an explanation for the careless error. The embarrassed nurse practitioner ordered follow-up lab tests for me, and promised to get to the bottom of the "mixup." I have yet to receive that explanation.

Taking the Time to Find a SPECIALIZED Specialist, Part I

The term "specialist" in the medical field is a broad one: "Medical specialists," according to WebMD, "are doctors who have completed advanced education and clinical training in a specific area of medicine (their specialty area)." There is a profusion of certain specialists, depending on where you live, while there is a serious shortage of others. Whether there is a scarcity or abundance, it will sometimes be necessary to travel out of state to find a "specialized" specialist. 

The type of specialist I must see is a rheumatologist, having recently been diagnosed with the relatively rare autoimmune disorder, Sjögren Syndrome. I've learned the hard way that not all rheumatologists are trained to handle patients with Sjögren Syndrome. In my situation, the diagnosis was made by a specialist outside the field of rheumatology (an otolaryngologist [ear, nose, and throat specialist]). That's because two rheumatologists, one of whom practiced at a prestigious hospital in New York City, actually refused to perform a simple biopsy that would have revealed my disease—neither rheumatologist believed my symptoms were consistent with those of the disorder. While I was in the room, the New York rheumatologist argued with the neurologist who referred me to her that she didn't think I fit the profile of someone with this difficult-to-diagnosis disorder. I later learned that neither of the rheumatologists to whom I was referred was trained in the area of Sjögren Syndrome, which on average takes seven years to yield a diagnosis. I lost more than a year of my precious time because of the opinions of two rheumatologists who were not familiar with my rheumatologic condition. 

My diagnosis was finally confirmed through two biopsies, one performed at my request, by an otolaryngologist specializing in head and neck surgery. It's important to note here that one of the simpler biopsies could have been performed in the office of one of the rheumatologists I had seen months earlier, generating the same results.

Medical specialties each cover a virtually limitless assortment of rare and common diseases. Even when living in or near a large city, where in one hospital alone you might find twenty specialists in the same field, it's important to remember that medical specialists are not trained to diagnose or treat every illness designated to their fields.

No Time for Secrets

When I get a phone bill, I'm foolish to pay it without thoroughly understanding what every charge means, but I usually pay it anyway. The bill is designed to look complicated, and the phone company depends on me not to care enough to question the charges—just pay up. Time's a-wasting, the due date's approaching, and I don't care—so I go ahead and pay it. That philosophy has gotten me through my life just fine, thank you.

But the only thing my body has in common with my telephone is a due date. I can't simply ignore what the numbers on my lab reports mean. My body depends on me to care and be informed about what keeps it running; my phone, on the other hand, will still operate even if I'm foolhardy enough not to care what all the numbers mean, as long as I just pay up.

For years, I left it to my doctor to interpret for me what "all those numbers" on my lab reports meant, and to call me with the results. If I didn't hear from the doctor, I could just assume that everything was normal. The policy of most doctors' offices and hospitals has been to send copies of records off to various specialists—never to me, the patient. And if I happen to obtain a copy "to keep on file," the results have not been thoroughly explained—I've left all of that information to the experts to decide what's important for me to understand. 

But, even by the most experienced medical staff, important details can too often be overlooked. The concept of "checks and balances" is out the window: too time-consuming and costly in a world where doctors are squeezing in as many patients in one day as possible. 

Without question, too much information in our secretive society can sometimes be dangerous, especially in the hands of someone with an overactive imagination: one sees or hears the word "growth" or "mass" or "lesion," and then suddenly he's breaking into a sweat and reviewing his will. Internet access has provided us with the ability to collect medical information on everything from hangnails to brain surgery, sometimes to our peril. But when doctors openly communicate information on our health, with no secrets, nothing is left to the imagination—there is no need to be our own interpreters. We have all the necessary information to make educated decisions about our bodies. 

It's Time to Start Asking Questions

I've learned over the years that asking questions is my responsibility to the well being of my body. If I don't ask questions, the assumption will be that it doesn't matter what I think—an ultimately dangerous assumption.

I've learned over the years that asking questions of my doctor's office staff is imperative to staying in the loop, and to ensuring that records and follow-ups are handled accurately and expeditiously. But medical office staff is overworked, underpaid, and under-appreciated—and a little bit of honey goes a long way: "Good morning, Beth. How are you doing today?" That should be a standard way to start asking questions of anyone. Even though having my records handled efficiently is my right, empathy mixed with assertiveness is critical. "Beth, I can appreciate how busy it must be in your office today, but it's imperative that my records be faxed to my neurologist before 5:00." On the other hand, believing that overworked, underpaid, and under-appreciated "Beth" will comply with that firm request is another dangerous assumption—that's because it's my responsibility to make sure that "Beth" has followed through. So, I call to be sure that not only has "Beth" done her job by faxing my records, but also that the neurologist's office has indeed received the said fax.

I've learned over the years that asking questions of my doctor is my right, especially if I think something has been overlooked. The best doctors are human; the best doctors make mistakes; the best doctors don't know everything; the best doctors will take the time to listen to my questions—if he or she doesn't have the answer, it's in my best interest to make sure that doctor finds a more experienced and informed colleague to help. There is no room for egos when it comes to the well being of my body!

It's About Time

After more than ten frustrating years of coping with a "professionally" undiagnosed illness that I had correctly self-diagnosed for several years, I'm pleased to say that I have joined the ranks of the "lucky" ones—lucky, because although my now confirmed diagnosis is unpleasant (Sjögren Syndrome), at least I have a diagnosis. I've empowered myself to take control over how my health will be managed.

• No longer will I employ a doctor who ignores my suggestions or treats me as if I've just arrived on his/her planet without a clue.
• No longer will I listen to claims that my symptoms are manifestations of psychosomosis.
• No longer will I assume that my records and test results are being properly handled and followed up.
• No longer will I be prescribed drugs and subjected to painful injections to treat the symptom without searching for the cause.
• No longer will I just take my doctor's highfaluting medical degree over my instincts when it comes to treatment.

It's about time.