To Life! Live, best friend

Ode A La Rose

Yesterday’s congratulations came from cyberspace, which arrived with a tinge of sadness, loneliness, and whiffs of isolation although I craved the validation that something important occurred. I was grateful to the 106 Facebook friends, most of whom I will never meet, who clicked the like, heart, and care buttons in response to my announcement.

The metaphorical door closed on the most challenging, frightening, and painful period of my 67 years. I sat with Alfateh Sidahmed in a sterile medical room at George Washington University Hospital among computer, red medical waste basket, oxygen tanks, EKG gadgets, scale, examination table, and extra white coats hanging at the back of the door to receive the final dosage from a double blind clinical trial of 1400 participants from Argentina, Australia, Brazil, Canada, Cyprus, France, Germany, Italy, New Zealand, Portugal, Spain, Sweden, Taiwan, Turkey, and the United States. The repeated blood draws and urine tests, vital signs exam, endurance tests, electrocardiograms, echocardiograms, and questionnaires were now over.

Seeing Al once a month when he served me European chocolates and black coffee as we waited for the pharmacy to mix my mysterious concoction ended. I knew this day would arrive. I was counting down the months in anticipation of joy. In this room Al and I shared vegetarian recipes, pictures of my godsons, his wedding video, music, and poetry. Al taught me how to pronounce words in Arabic, told stories of his life in Sudan, and shared his reasons for veering from clinical study to research. I delighted that his parents loved the See’s chocolates I gave him and, on this day, delighted in the Dubai chocolate that he and his mother made as he told me the story of its origin at Fix Dessert Chocolatier.

Three years ago, I inquired into clinical trials studying hereditary Transthyretin Amyloid Cardiomyopathy (hATTR-CM). My cardiologist referred me to Dr. Panjrath, expert on my disease, who asked if I would like to be considered for the IONIS trial of the drug then called eplontersen. It was exploring whether the therapy stopped transthyretin production, reducing cardiomyopathy progression in patients with hereditary ATTR-CM. I must pass a series of tests for eligibility. The trial lacked desired numbers of both women and Blacks, making my participation all the more valuable. I underwent the tests and while my extremely low blood pressure nearly bounced me out of contention, my cardiologist assured researchers that low is my normal, not to be concerned. With that came acceptance and the beginning of monthly injections for the next three years.

In the past four years I underwent two cardioversions and two surgical procedures. I left employment on disability three times. I endured two manic depressive episodes directly related to an inability to cope, at one point begging my mother to rise from the grave to help me. In one stretch I was under review of five cardiologists. My primary care physician shocked me with the suggestion that I inquire about heart transplant. Dr. Panjrath’s response was that I was not a candidate…yet.

More than three years ago Dr. Panjrath told me that I was terminally ill. I had as little as two and a half years to live, only one of those with a decent quality of life. I shopped to adorn my decaying body. I traveled Europe. I then settled down with the question, “What will I leave?” I inquired about a clinical trial. I’d lived and worked through the AIDS AZT crisis in the early 1990’s and knew most trials offered no cure, but they did aid scientists in the search. I could lend myself to aiding scientists. With my primary care physician, I arranged for my remains to be donated to cardiac medical research. The rest of my life was an offering to an experiment.

It was unexpected more than a year into the trial at the close of my visit Al quietly said that the trial was a success. I watched him slowly wind up. He spun the details, details that I couldn’t hear, couldn’t comprehend except the one line, “The trial has proven effective at stopping disease progression.” I bent forward, my face dropped in my cupped hands. I sobbed. Someone caressed my shoulder. The room went silent. I don’t remember what happened next, what I said as I left the office, how I got home, Uber or metro. I only remember that I walked into my apartment, dropped to my knees, and for the first time since I was young said aloud “The Lord’s Prayer.”

Yesterday the trial ended. On July 26th Dr. Panjrath’s team will exam me - endurance, electrocardiogram, bloodwork, vitals. He will reveal whether I have been recipient of drug or placebo. He will say things that I will comprehend in the moment and then not remember. I will ask if I may hug him. His team likes chocolate. I will bring him two pounds of See’s custom picked dark, dark because some medical research paper buried somewhere at NIH says that dark chocolate is good for the heart. We must protect our hearts.