In 2018 I was diagnosed with a rare immune disorder called Autoimmune Hemolytic Anemia. My hemoglobin dramatically dropped and landed me in the hospital. It was a scary day as I had been living my life as if my body was not already falling apart. At the time, I had just quit my first full-time job. I had been working as a personal trainer at a local spa and spent 8 hours daily on my feet. It took a toll on my body; unfortunately, I had to quit that job.
In the months leading up to my hospital visit, I felt weak and had constant pounding headaches. I slowly started noticing my eyes, skin, and urine all showing a noticeable yellow tint. I would do my makeup and feel like I was losing myself. Living with multiple illnesses already, I had no idea I was about to add another one to the list.
I can remember the day so clearly. I was subbing for a high school class that was quite rowdy. It was a cold December day, and I could feel aching in my heels with each step. Once the day was finished, I walked over to my mom’s office, a familiar sight as she works at the school I went to High School at. Once I arrived at her office, I realized I had a missed call from my rheumatologist. He urged me to go to the hospital immediately and said my hemoglobin was at a dangerous level. Instantly, I felt the blood leave my body. My body felt the wave of weakness take over as the realization hit me, I am alarmingly sick.
Once we arrived at the hospital, it was much of what you’d expect—a long wait with others wailing in pain. Many coughs are full of sickness and fear visible on my mom’s face as she knows the dangers of the hospital for someone with a suppressed immune system. Eventually, I was taken to the back and assigned a bed in the hallway. Next comes the EKG, needles, and labs. As a woman, I am tasked with providing urine to ensure I am not pregnant. Feeling weak, I do this with the assistance of my mom.
My now husband arrives at the hospital by this time, and I am surrounded by the people I love most. Despite how I feel, I worry about how they are feeling. I am worried about them getting rest, and even though I am not allowed to eat, I pursue them to do so for themselves. Later that night, I am given my own room, a blessing. We still don’t have many answers, but at this point, we know it involves anemia.
Anemia is relatively common among lupus patients, but my hemoglobin and red blood cell count steadily dropped within six hours of my first blood test. I was assigned a hematologist who explained to my family and me what he thought was going on. He explained that I had what looked like Autoimmune Hemolytic Anemia, a rare immune disorder. It turns out that only about 3% of adult Systemic Lupus Erythematosus patients end up developing the condition. Among the general population, 1 to 2 out of every 100,000 people are diagnosed each year.
It was scary looking up the statistics. What did this mean for me and my future? One thing I knew, I had to spread awareness and share my story. No matter how difficult this new diagnosis was, I wanted to share what I was going through as it could help someone else. To this day, I am still dealing with Autoimmune Hemolytic Anemia. It now occurs almost yearly, but I am thankful for the months when it is not burdensome.
So what is Hemolytic Anemia?
Autoimmune Hemolytic Anemia is a rare immune disorder where autoantibodies destroy your red blood cells. This destruction can make treating it difficult, as blood transfusions are not always possible. During my stay in the hospital, my specialist wanted to avoid transfusion as it was challenging to find a match, and my body would most likely destroy the blood cells before I had a chance to recuperate.
How do you diagnose Hemolytic Anemia?
A blood test is the easiest way to determine if you have Autoimmune Hemolytic Anemia. Most doctors will send you in for a comprehensive metabolic panel and CBC. These two panels will include essential markers that can indicate hemolytic anemia. With hemolytic anemia, you will see an increase in bilirubin. This increase in bilirubin is caused by the destruction of red blood cells and a decrease in haptoglobin.
To confirm the diagnosis, a specialist will run a few other tests to ensure which type of anemia. One test includes a direct antiglobulin test (DAT). The direct antiglobulin test will help to determine if your red blood cells are covered in antibodies. The antibodies attach to the red blood cells because your body recognizes your red blood cells as a foreign invader, creating an immune response.
How do you treat Hemolytic Anemia?
Treatment of Autoimmune Hemolytic Anemia can include any of the following:
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- Corticosteroids (prednisone)
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- Transfusion
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- Splenectomy
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- Immunosuppressants
At the time of my hospital visit, my hemoglobin dropped to 7.1. If my hemoglobin levels had dropped below 7, they would have given me a blood transfusion despite having incompatible blood. Typically, transfusions are used only in severe cases as the recipient’s body will likely continue to break down the new red blood cells.
The next step in treatment is prednisone. The patient will be given high doses of prednisone to start and gradually taper to lower amounts. This process can take anywhere from weeks to months. If the prednisone is not working or the patient is on it long-term, immunosuppressants will be administered next, or a discussion of spleen removal will be considered.
At first, Autoimmune Hemolytic Anemia is a scary disorder to be diagnosed with. Take some time to find a good specialist and learn more about what symptoms you should be looking out for. If you are interested in following me along on my own journey, please follow me on Instagram. If interested, I have created a free resource for you to download on my website. This is a printable symptom tracker that you can use to track your symptoms before your appointment.
