The cost of care was an issue for Brian, a patient referred to me after he sought emergency room treatment. Had he not been worried about the cost, Brian would have seen a doctor when his headaches first progressed from bad to worse. But let me back up.
I met Brian and his partner, Joe, not long after they moved from Southern California to Auburn, Alabama. Brian was an artist, a Bohemian who worked construction and retail jobs to pad his income from selling paintings and drawings. Joe had just completed his PhD and post-doctoral fellowship in plant biology, and had been offered an assistant professorship in Auburn University’s Department of Botany. While neither Brian nor Joe had ever conceived of living in the Southern United States, they moved enthusiastically. Teaching at a major university was not only Joe’s dream job, but it meant steady income and health insurance—a ticket!
Joe’s ticket, however, was not transferable to Brian. Gay men did not, and in many places today still do not, have partner benefits. So before the couple left California, Brian bought an independent health insurance policy. The $800 monthly premium took a big bite out of Brian’s earnings so, to help, Joe paid most of it. Despite the policy’s cost and its high deductible for hospitalizations, Brian figured it was an adequate safety net for someone like him who’d always been very healthy.
Brian and Joe were still settling into their new home in Auburn when Brian’s headaches began. They started at the base of his skull and were dramatically more painful whenever he coughed or sneezed—“like the top of my head would blow off,” Brian reported. These are the classic symptoms of what Brian later was confirmed to have, cryptococcal meningitis. “Crypto” is caused by a fungal organism in the environment that most of us can breathe into our lungs and not be harmed, thanks to our normal immune systems. If the immune system is impaired as it can be by HIV, the organism sets up shop. Then it causes pneumonia or, more often, infection and inflammation of the meninges, the layer of protective tissue that surrounds the brain. Inside the skull, spinal fluid bathes the brain and creates a cushion between it and the meninges. A healthy person’s body creates about 500 milliliters of spinal fluid a day and re-absorbs the same amount, maintaining an even exchange of fluid. But crypto meningitis impairs that reabsorption so that the fluid accumulates in the skull, causing increases in intracranial pressure (ICP) that, if not relieved, can have devastating effects on the brain. To describe the pain associated with this as a “headache” is like thinking of a nuclear bomb as a fire cracker.
On top of the headaches, Brian began experiencing confusion, impaired vision and loss of hearing. On a Friday in early November 1988, Joe took Brian to the Emergency Department in Auburn where he was seen by Dr. Allen Graves, once an infectious disease fellow at UAB. By that time, the rising ICP had rendered Brian blind and deaf—and the only way to get to the bottom of his condition was to perform multiple procedures, including a lumbar puncture. The procedure, commonly known as a spinal tap, is uncomfortable for some patients, excruciating for others.
For someone unable to hear or see, I can only imagine it would be terrifying to be held tight and still by strangers’ hands, then poked in the lower spine with a needle. But the procedure was essential, both to collect cerebrospinal fluid for analysis and to lower the pressure in Brian’s skull. On the manometer used to measure ICP, a normal measurement is 50-100 mm of fluid. Brian’s initial tap exceeded 550 mm, the highest reading on the instrument.
Allen transferred Brian to my care, and I was at the UAB hospital on Saturday afternoon when he arrived. He was on an ambulance stretcher, writhing back and forth, fighting the restraints the attendants placed on his arms and legs to keep him from hurting them or himself. Joe was at Brian’s side, stroking his hand and speaking soothingly, but Joe’s reassurance literally fell on deaf ears. It was an agonizing sight.
The subsequent taps we performed lowered the pressure in Brian’s head enough that his confusion cleared and his hearing was partly restored. Once we could communicate with him and explain what was happening, Brian was able to relax and to talk about what he had been through. In his pain and confusion, he had imagined that he was being kidnapped and his captors had put something over his head so he couldn’t see or hear. But he could certainly feel, and when Allen stuck the needle in his back, he was sure he was being tortured!
Brian’s vision never returned—a profound loss for a man so passionate about making art. But we got the meningitis under control with medication and after a few weeks of recovery, he was discharged from the hospital and went home to Auburn.
For Christmas 1989, about a year after Brian’s transfer to UAB, he and Joe brought me a flat, rectangular present wrapped in holiday paper. It was a chalk drawing Brian had done for me since losing his sight. He had drawn a colorful tree, with a hand above it holding a watering can. On the water pouring from the can, he scrawled “LIFE,” and next to the hand, “DR. SAAG.” The inscription at the bottom read, “Merry Christmas, Dr. Saag. Thanks for saving my life.”
I hugged Brian and Joe as I thanked them, tearfully. In that moment, I really felt like American medicine was doing something right. We’d bought time for Brian, and he was a living gift to each of us.
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