In the beginning of the year 2023, unease came to settle on our household. It all began with anemia. After my physical in October, Dr. Patrick Coleman, my primary care doctor asked me to come in and retest because my red blood cells and hemoglobin count were low. I didn’t go back in because the phlebotomist must have been having a terrible time that day. Multiple attempts to hit a vein left me bruised, bloodied and traumatized. I have had a lifelong fear of needles.
I developed a burning stomach pain, concentrated in a very specific area. I couldn’t sleep. The thought of eating made me nauseated. I made a visit to a Piedmont clinic where a nurse practitioner named Vickie prescribed several different pills. She also drew labs and called me the next day to inform me that my red blood cells and hemoglobin numbers were even worse than they had been. Because of my stomach pain she suspected I had an abdominal bleed. She advised me to get in touch with Dr. Quinn, my gastroenterologist, who scheduled me for an endoscopy and a colonoscopy.
At the same time, my left testicle swelled up to three times its normal size over a three-day period. My friend Jeff, who works in urology determined that the swelling didn’t appear to be a tumor. Mark scheduled me for what turned out to be the most terrifying ultrasound possible with a tech who scanned my testicle. I felt exposed, scared and mortified. The good news was that there was no tumor. The diagnosis was epididymitis, an inflammation of the tubes down there. Mark prescribed me antibiotics and ultimately the swelling decreased.
My stomach pain decreased about the same time as my endoscopy/colonoscopy, which found absolutely nothing wrong. Dr. Quinn then scheduled a CT scan, an MRI and a pill cam. With a pill cam you wear a receiver on your belt. You then swallow a pill that has a camera in it, and as the pill travels through the small intestine it takes a bunch of pictures that the receiver attached to your belt picks up. At the end the pill travels the rest of the way through the digestive track and ultimately ends up getting flushed. None of the tests showed any abdominal bleeding.
Then the eye situation happened.
The burning pain in my abdomen started throbbing again, but in a totally different area of my stomach. I again went to the Piedmont clinic for an appointment with a different NP, who had the bedside manner of a gravedigger and was a dead ringer for Republican Representative Lauren Boebert. In the short time she spent with me she refilled the same prescriptions that Vickie had prescribed and wrote the order for labs.
Later that day I got an alarming message through the patient portal from the unpleasant NP that my hemoglobin was dangerously low and that I should go to an emergency room for a blood transfusion. My hemoglobin was hanging out in the 8 range, which while not good didn’t facilitate he need for a blood transfusion. The NP called me the next morning and harangued me about not monitoring my hemoglobin and why hadn’t I gone to an emergency room for blood. I refused. She told me I needed red blood cells. I told her that I was not convinced that my numbers warranted a crisis just yet. She ended up writing me a referral to a hematologist.
After the glaucoma situation leveled off, strange inflammations began occurring. A random area on my arm or leg would get hot and swell and generally feel terrible. I could always tell when a new one was coming up because I would feel feverish and tired. As soon as the heat and swelling from one inflammation would start to decrease, another would begin to form in a different location. It was inflammation whack-a-mole. My ability to walk normally was impeded. It was scary as hell.
I was sent to several different doctors, a GI doc, a rheumatologist, an infectious disease specialist and a hematologist. I had X-rays, ultrasounds, CT scans, MRIs and was finally sent to Piedmont Hospital for a bone marrow biopsy.
None of the doctors could tell me what was wrong.
Other than colds and an occasional flu, I never get sick. I grew increasingly alarmed.
My hematologist Dr. Pandit finally identified something called MDS-myelodysplastic syndrome as the culprit for my anemia. My bone marrow is producing white blood cells and platelets just fine but not producing red blood cells correctly.
This diagnosis did nothing to explain the inflammations. Modern medicine has a tendency to be siloed. Each discipline stays in their lane, knows the ins and outs of their specialty but hasn’t received training and experience for stuff outside of their realm of expertise.
Dr. Pandit referred me to the Emory University Hospital for an appointment with Dr. Amelia Langston, who’s over bone marrow transplants. That’s when things got really bizarre.
The Wil World 