A couple of months ago, I wrote about my first appointment with my new nephrologist, Dr. Mididoddi, and the possibility of facing another life-changing chronic disease diagnosis. After doing research for my column, I speculated that I would be diagnosed with AA amyloidosis.
To prepare for my follow-up appointment with Dr. Mididoddi, I got blood drawn and brought in my 24-hour urine collection. When I received the results in the patient portal of the lab’s website, I wasn’t too surprised. My blood urea nitrogen was high as were the protein levels in my urine, called proteinuria — both elevations indicate kidney damage. I was already aware that my serum creatinine was above the normal level from the routine, bimonthly blood work ordered by my hepatologist and gastroenterologist. However, the results of the creatinine clearance from the urine collection, which is a more accurate determination of kidney function, confirmed my kidneys weren’t working at an optimal level.
In the days that followed the posting of my test results, I researched possible next steps to prepare for my nephrologist’s appointment. After two decades of various tests to diagnose my multiple ailments, I wanted to be sure of any arrangements I might need to make for future procedures, especially when all the signs pointed to the necessity of a kidney biopsy to confirm the diagnosis of a specific renal disease.
The day of my appointment, I sat anxiously in the examination room. I expected the nephrologist to go through each abnormality in my labs as he built up to his prognosis. I almost fell off the examination table when he told me that all of my numbers looked stable and as expected, considering my Crohn’s and liver transplant. He said that any renal disease I had was most likely being kept at bay by the immunosuppressants, Remicade (infliximab) and tacrolimus, I was already taking for Crohn’s and my liver transplant, respectively. I was still in a state of delighted shock and relief as Dr. Mididoddi shook my hand and told me to come back to see him in a year.
I had become so used to the sympathetic eyes and apologetic tones of doctors while delivering bad news, that Dr. Mididoddi‘s nonchalance was an anticlimactic end to the scenario I had built up in my mind. It may have been the first time I’ve ever had a doctor dismiss my symptoms without ordering more tests or writing a prescription. It made me realize that I had behaved like a hypochondriac who Googles her symptoms and believes the internet’s terminal diagnosis. I had what Emily R. Doherty-Torstrick and her colleagues call cyberchondria, which refers to “searching the web excessively for health care information” to the point of achieving nothing but increased and needless anxiety.
While being educated about my chronic diseases, especially throughout my Crohn’s journey, has made me a proactive participant in my healthcare, there is a point when research can become excessive — or even obsessive — and I had hit it. I like to tell myself and others that I don’t worry about my circumstances until my doctors tell me to be concerned. However, after my appointment with the nephrologist, I discovered that my coping mechanism is to research the absolute worst-case scenario to mentally prepare myself for what might lie ahead. I create the anxiety beforehand when I can control it so that I can be emotionally prepared for the bad news if or when it becomes a reality. I now realize that my method is pointless and counterproductive.
I have an entire team of medical professionals looking after my health, and I should let them do their jobs instead of trying to do it for them. While my thirst for knowledge will never wane, I need to learn when enough is enough when researching my ailments. Otherwise, I’m cheating myself out of enjoying my good health while I have it.
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