My Journey
Through warm Autoimmune Idiopathic Hemolytic Anemia
When I read my journal from October 2019, I remember that I was in the process of selling one home to buy another, packing belongings, and planning how to move my mother into Assisted Living. I was also considering my next career move while still answering random questions from the job I left three months prior. And fear. Fear that I was dying but didn’t yet know what was killing me. Blood tests, CT scans, Ultrasounds, Hematologist/Oncologist appointments, and then the waiting. Every moment I waited, I rehearsed my impending demise. When should I tell my children? Who will calm my mother when she’s dementia-confused and frightened? How will my granddaughters remember me? Have I done enough to exit gracefully?
Two weeks prior, in the middle of the night, I had awoken violently ill. Admittedly, I had overindulged at a birthday party that evening but didn’t have a history of vomiting. But, there was pain along with that chicken saffron couscous. Pain in the center of my churning belly forced a guttural moan as I curled on the bathroom tile. I rationalized, though, I was never an armor-clad fighter — more of the whining type. The following morning, I nursed my hangover behind blackout curtains with water and Tylenol. By mid-day, I was fine, rough, but functioning. I read and wrote emails, posted silly memes on Facebook, talked to my mother, cooked dinner. Everything was back to normal. The following morning, nose to nose in my magnifying makeup mirror, I saw saffron again. I was jaundiced.
I was fortunate to have a General Practitioner who fancies a good medical mystery. He ordered extensive blood tests, then ordered more, including a Coombs Test. Then, he called me with the diagnosis of Hemolytic Anemia. He provided me with brief details about my pancreas and hemoglobin. Still, I was too shocked to catch most of what he said until he declared his next discovery would be the malignancy causing the Hemolytic Anemia. Malignancy? I panicked. I felt fine! I clearly did not feel like I was dying. Then again, would I know how it felt to be dying? Medical mysteries are more amusing to doctors than patients.
It was true; the year that led me to this point was one of the most arduous times of my adult life. After graduate school, I swiftly found my dream career. I worked long days and nights, often traveling for training. I studied the job and was promoted early. And I hated it. Over those seven years, it became clear that my dream job was my living nightmare. Despite my efforts, I would not feel successful nor appreciated there. By the time I called it an ‘early retirement’ and ran, I had stayed too long. Rather than relief, I was angry for failing where it was impossible to thrive, filled with self-doubt, and still stressed. Consequently, I worried about not having a job at all, moving an hour away, and my mother’s growing dementia. Over those seven years, I self-medicated with various shades of red wine and gained 40 pounds. I considered that dying might be easier as living had become brutal.
I cried through my first appointment with the Hematologist/Oncologist, the only one in my small town. I didn’t have one person, friend, or family who was familiar with Hemolytic Anemia. Before arriving, I had read medical journal articles and even study-guides for medical students, but I still had gaps in my understanding. When I found it listed in the National Organization for Rare Diseases (NORD), it disturbed me so much I forced myself to stop Googling. I also didn’t know the results of the latest scans. I was thankful that my doctor provided me with a step by step explanation, complete with multi-colored illustrations on a wipe-off board. He spelled out the difference between cold and warm Hemolytic Anemia. And he said that it was ‘probably’ Idiopathic since nothing in my bloodwork or scans was evidence of lymphoma. But there were more scans to come. And, unfortunately, they don’t know what triggers most autoimmune disorders. The only question I remember asking him was if anxiety could be a trigger. When he answered, ‘definitely,’ I cried a little more. He handed me tissues then explained Prednisone Therapy and the options and risks in titrating the medication. An ultrasound showed mild Hepatomegaly, undeniably from my exogenous self-medication, and which answered for the jaundice. I left with a weekly blood test order, a prescription for 80 milligrams/day of Prednisone, and a plea to cease and desist any and all self-medications.
In all of the information my doctor shared, he failed to describe the prevailing side-effect of an extremely high, frequent dosage of Prednisone, the euphoria. By Thanksgiving, I was still very much euphoric even though the fat from my breasts had repositioned under my chin, indicating Cushing’s Disease and I was also now faithfully yet fearfully checking my blood sugar for diabetes. I maintained the 80 milligrams/day for three weeks, then 70 milligrams/day for another three weeks. It isn’t easy to read my journal during this time. I was thrilled to get four hours of sleep most nights, typically though I was wide awake after only two. I was invariably moving, talking, thinking. I was ecstatic — about everything. I became less afraid of dying, more fearful of not living, truly living, an authentic, valuable, more joyful life. I wrote in my journal nearly every day, but I can’t decipher most of my handwriting.
There are so many moving pieces to this disorder; it can quickly become quite perplexing. I was still traveling an hour each way to continue seeing my original Hematologist when he informed me that 2.5 milligrams of Prednisone, 3 times/week was the lowest dosage he would consider. My hemoglobin had steadily increased as I decreased the Prednisone, and yet he warned that if I discontinued the Prednisone and the anemia returned, my body might not respond as well. But, but, but I’m only 55 years old. What about the side effects of low dose, long-term corticosteroid use? Osteoporosis? High blood pressure? Diabetes? He insisted, so I searched for a new doctor. I was not looking for a doctor who would agree with me but one who was willing to consider treatment options. Eventually, I found a Hematologist not far from my new home. She agreed that the risks of continuing the Prednisone, even in small doses, for the rest of my life, outweighed the chance that the anemia might return and would be unresponsive to the Prednisone. This was the first time I felt like I was taking control of my health. And it felt like a win.
A couple of months later, with the Prednisone’s effects still present but manageable, I took advantage of the time, the remaining energy, and the euphoria, which had gradually receded into a serene bliss. Like many do when faced with a significant health crisis, I went about reenvisioning my life. Instead of considering a “post-early-retirement” career or even my next job, I made lists of how I wanted to spend my time. Time became a driving force behind my decisions. My work could no longer consume me. I wanted to be available for my mother, children, and grandchildren. I would strive only to make ‘enough’ money to live on; food, clothing, shelter, any funds after that, would be cake. First, though, I had to determine how much money that would be. My partner and I had an unconventional relationship in that he had retired as I was starting the career I’d left. He also lived in another state six months out of the year. Many of our finances were mingled. Reimagining one’s life is a fascinating and complex adventure. On paper, it can appear much like a messy diagram. Circles for people, boxes for work, intersecting lines between hobbies and interests, needs and wants. I highly recommend it before you think you might be dying. Life is messy, but I didn’t want to miss a moment.
It takes nine months to grow a human being from seed to infant. It took me nearly as long to become better at being a human, at least in terms of work, health, family, and friends. I found I could make money in multiple ways. I learned how to design clothing by watching videos, then opened an Etsy store called AKAConnects. I started writing more personally and professionally, and I discovered Contract Work. Having a variety of flexible positions keeps me interested but not overwhelmed. I have time for family and friends, and I truly enjoy all of my jobs. My health plan was to try intermittent fasting, eat a large, healthy lunch, and mainly protein for dinner. This ‘diet’ worked for me. And, I learned how to be a runner by reading a book and buying a treadmill. It was painful and ugly. And I was a sloth. But I was consistent. Today, I run 3.33 miles, 3 times a week, because I don’t particularly like odd numbers, and I don’t particularly enjoy running. It’s rarely comfortable and still not pretty but, I like the benefits and the results. I lost the extra weight. And, I feel incredibly healthy.
It’s interesting how major events in one’s life can quietly intersect without much fanfare. When COVID struck, I questioned if my body would defend itself against the virus or conspire to kill me quicker. I worried but held tight to my new list of life priorities. Like the rest of the world, my family and friends began visiting via video chat. Since my partner had sold his house in another state, and I was working from home, it forced us into a relationship neither of us wanted. We parted amicably the same week that friends three states away called to ask if I would be interested in housesitting and managing their Airbnb for the next school year. I packed most of my belongings into a storage unit and moved two weeks later.
Today, I live alone in a 4,000 square foot home in three acres of forest in upstate New York. Besides my flexible, work-from-home jobs, I manage the Airbnb, care for eight perineal gardens and a small pond home to two toads. I’ve met kind and colorful locals and travelers. I’ve learned stuff like how to repair doorknobs, screen doors, assemble a composter, catch a chipmunk, as well as the local vegetation, the Finger Lake birds, and some critters. I’ve named “the regulars,” the squirrels, chipmunks, a red fox, a healthy raccoon, and a carefree skunk; those who seem to stand guard as I walk the grounds, particularly at sunrise and sunset. I’ve found that prioritizing time has expanded my view of the world and my place in it. There’s a large tree stump in the middle of a clearing at the back of the south hill; I call it The Stump of Gratitude. I stand atop surrounded by Red and Silver maples, Green Ash and Yellow Birch, and give thanks for this new life. When friends worry about me living alone, far from home, I assure them that in addition to my doctors, the universe is also taking care of me. I’m happy, successful, and appreciated.
*I discontinued all Prednisone in July 2020 and continue to feel very healthy. I consider myself extremely lucky; I was diagnosed quickly, and I responded to treatment without incident. Unfortunately, When I read through various research studies regarding treatment options for wAIHA, the sample sizes are invariably small. Is this because wAIHA is truly a rare disorder or because many patients are misdiagnosed? Or both? Could it be that preexisting conditions mask the illness making it more challenging to diagnose and treat? There are countless unanswered questions about the disorder, but if we stop asking questions, how can we ever expect to find the answers we need that would allow us to stop wondering if, when, and how we’ll be healthy again. The wAIHA Warriors are an essential step in finding these answers by educating the public, encouraging research, and supporting patients. (www.waihawarriors.org)
