Dealing With Autoimmune Hemolytic Anemia

In July 2009, the summer before my freshman year of high school, I fainted in the shower. Thankfully, my mom was in the bathroom with me. It was a scary experience all around, and an ambulance was called. I was extremely congested and dehydrated, so at first, we attributed the incident to that. After multiple tests and pokes in the emergency room (my fear of needles was raging), it turned out that I had a blood disorder titled autoimmune hemolytic anemia. I know, what the f*ck.

Defined by Merck Manuals, autoimmune hemolytic anemia is a “group of disorders characterized by a malfunction of the immune system that produces autoantibodies, which attack red blood cells as if they were substances foreign to the body.” According to the Mayo Clinic, a woman’s hemoglobin count should range from 12 to 15.5 on average. At the time, mine dropped to a four. It came out of nowhere. My hematologist started me on prednisone, a corticosteroid that has some brutal side effects. After my hemoglobin count started gradually increasing, my doctor sent me home on “house arrest” for a few weeks, where I continued the treatment.

Prednisone is NOT fun. Some of the side effects I experienced included restlessness at night (I never slept for more than 2 or 3 hours at a time), moon face (swollen cheeks), weight gain, nausea and anxiety. Entering high school looking like a chipmunk received the reaction you might expect from 14-year-old brats: constant teasing and pictures of my face being drawn on the white board in front of my entire math class. When all of this is happening AND you’re an emotional wreck? Not a good combination. As my hematologist decreased my dosage to gradually reduce and stop the treatment, things started changing back to normal with my appearance and general well-being. However, being that I’m about to turn 23, the memories and experience overall very clearly stuck with me. I can’t help myself; it’s one grudge I’m not willing to let go of.

Speaking of “sticking with me,” last Monday, I passed out on the PATH train on my way to work. To my surprise, not everyone is a jerk on the morning commute into NYC, and someone helped me to a bench, where I waited for an ambulance. Again, I was really congested and dehydrated from the cold medication I was taking, so I wasn’t too worried. Besides, after years of testing (from 2009 to 2014), I was officially cleared to go. My hematologist didn’t think it would come back, since I had been sick with colds and infections multiple times after that and nothing triggered it. I was taken to a hospital to be checked out, and, to my surprise, my hemoglobin count was a nine. Again, what the f*ck.

I was terrified. This wasn’t supposed to happen. It’s April. The sun is coming out. I have a job that I love and was on my way to a marketing meeting to present some of my new goals and ideas. I have a boyfriend who loves me, friends and family who love me and truly am in a good place. Why again, and why now?

I missed my meeting (obviously). I stayed in the hospital from Monday to Thursday, and my new doctors started me on the same treatment. My stomach is painfully bloated and I’m weak. They cut off my Prozac and told me it could have helped trigger the autoimmune disorder (what?), so I have to find another way to deal with my anxiety. My face is, again, starting to swell. Emotionally, I’m in a much better place to deal with the side effects of the drug. I’m still nervous. 22-year-old Dianna is very different than 14-year-old Dianna, but as I said, I couldn’t shake certain memories and experiences.

I can’t predict when my body will decide to attack itself again. I also can’t live in constant fear. As creepy as it sounds, I think my body is learning, being that I passed out at a higher count than the last time this happened. The symptoms are pretty general for autoimmune hemolytic anemia, including fatigue, dizziness and nausea (I’m not a morning person and never have been, so this is a daily thing for me). The only way to monitor it is through blood tests. No one in my family before me has had it, or anything close to it. It just appeared.

More than anything, I want my energy back NOW. I know it’ll take a few weeks. I’m not sure if this is accurate, but my dad told me that for each day you’re in a hospital bed, you need another week of recovery. I got a huge burst of energy on Saturday and cleaned my entire apartment. I stayed up a little later at night, which means I wasn’t completely exhausted. I want to go back to kickboxing, but I’m going to have to wait. I want to commute as I normally do (yes, on a sweaty, packed PATH train), but I may have to drive into work for the first week or so. I’ll need to go back to the hospital for testing quite frequently. It’s going to take time, and I understand that, even if I hate the needles.

I wanted to share this story for those who are currently battling or who have overcome an illness, disorder, disease, whatever, to let you know that you are not alone, or even to remind myself that I’m not alone. There are those who are far worse off than I am, even if I felt that my entire world was crashing down on me – again – last week. As I said, I’m in a really great place in my life right now. I’m also young and have a lot of life ahead of me. I cannot live in constant fear that I’m going to be sent to a hospital a few times during my lifetime, or worse. This isn’t how I want to live my life, so I won’t.

Chubby cheeks, emotional wreckage via a pill the size of a mint and all.

-D

6 thoughts on “Dealing With Autoimmune Hemolytic Anemia

    1. More so meant to make myself feel better and finally let it all out. Stooping to a lower level, maybe, but I’ll excuse myself this time!!! Thank you so much. ❤️

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  1. I love everything about how this article was written..#truth fears emotions. Your a strong woman.. what didn’t break you makes you stronger. I share your fears for different reasons though..I think the world of you..Keep smiling it looks beautiful on you xo

    Liked by 1 person

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