In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets, Hemoglobin 10, good neutrophils). From September to April, I began supplements (not under the direction of a physician), increased my physical activity massively (including running long distances), and began eating healthier. I also drank more.
In April 2022, I began having menstrual cycle changes, vision changes, increased palpitations, and hearing my heartbeat in my ear. The heartbeat made me go to the hospital---its intensity increased and was unbearable, intolerable. My husband thought it was some post-partum difficulties. I didn’t want to go to an Emergency Department. I had just lost my son. I didn’t want to go because the nearest Emergency Room was affiliated with the hospital where I delivered him. Everything reminded me of losing him. I was still grieving.
Eventually the sound became so dreadful and haunting. I would hear it so bad at night when I went to bed. One day, I laid on the couch to watch tv. I heard it the loudest it had ever been. I decided I had to go be seen.
There, I learned my Hemoglobin was in the 5s. I was thinking it was hormonal or something. An ambulance took me to the nearest bigger facility. Later they told me about the low platelets. After a transfusion, I left against medical orders. I was extremely fearful-I wouldn’t even initially go to my room. In fact, I only agreed to meet with the attending physician in the lobby. Once he found out I was leaving, he called the nurses cell phone and asked to speak to me personally. He begged me not to leave.
The medical team kept saying I could die if I left. I left anyway.
I told no family members about this whole ordeal. I only confided in my church counselor. I told my hubby bits and pieces.
The nurses kept saying I look like a leukemia patient on paper.
Because I kept leaving against medical orders, things were delayed---I didn’t get my bone marrow biopsy done until the following week. I came to the Emergency Department every day during this week and a half and left against medical orders every day. I knew I needed transfusions, but I wasn’t staying the night, so I kept leaving. I really didn’t want to know the answers. I was scared. So scared. Once results were back, I was glad to learn it wasn’t cancer. I thought aplastic anemia was like iron deficiency anemia or something. I thought, “Okay, cool.” Boy was I wrong!
It was bad. My cellularity was less than 10%. (Six weeks later, it was less than 3%).
That same day, I was recommended to a big facility (since most bigger cities can only deal with aplastic anemia). It seemed emergent. I didn’t understand the full seriousness of aplastic anemia at the time. I finally told my parents. My dad drove me 5 hours the next business day to the big facility. There, the medical team recommended a 30-day waiting period to see if alcohol cessation would increase my numbers. It didn’t.
My lowest neutrophils were 0.04, and my platelet count --- the lab could only say “less than 2.” Staff were all saying these were the lowest counts they’d ever seen.
I still tried to be a normal mom. I didn’t want my kids to miss out on anything because of me. Nor do I like asking for help. I remember taking my kid to a birthday party. One moment, I looked down at the top of my hand- there was a huge blood-filled development on top, had to be bigger than a golf ball. It scared me so bad. But my baby girl was enjoying the party so much. I ignored my hand. We weren’t leaving.
My anxiety was increased at this time too. I remember researching so much. So much. Looking for any glimmer of hope online. In social media. In research papers. One night after researching, I fell asleep, waking up to a pounding heartbeat. I was in full fight-or-flight. My heart was coming outside of my chest. I felt it. I thought I was dying. I called my after-hours doctor’s line rambling. I called 911 rambling. I really don’t even remember what I was saying. I think I was out of my mind. I woke my husband up, screaming that I’m dying. I was sure it was happening. I was sure that the blood I had gotten earlier in the day was interacting with my blood as a reaction. He took me to the hospital.
I learned that I was medically stable, but I was in full panic attack mode. I was so embarrassed. I felt stupid. They drug tested me.
I remember it being so much. So much. So overwhelming. So pessimistic. It was a real low point. Again, it was so much!
I just wanted to die. I didn’t want anyone I was associated with to have to deal with this disease.
My treatment began when I started ATG in June 2022. My neutrophils rose. Hemoglobin became more problematic since ATG Treatment. It would drop below 7 at least every 10 days until the end of November. I’ve been platelet transfusion-free since August.
My life is not the same as before I got this disease. My current platelets are at 37, neutrophils at 700, and hemoglobin at 8.7. But I have come a long way. In an unusual turn, getting aplastic anemia has helped me grieve my son. It’s brought me closer to my kids and family. Getting aplastic anemia got me to the NIH! (As a nurse, this was a dream.)
Getting this disease helped me spiritually. I neglected my spiritual self a bit before the diagnosis. It’s kind of like having an invisible enemy- how can you fight something that no one really knows what causes it? No one really knows why it happens? Anything can cause it. Nothing can cause it. It comes out of nowhere. I choose to fight this invisible enemy with an “invisible” hero. An unseen thing: I take my meds and see the doctors, yes, I do, but I also have “faith” too, that I will be completely healed from this one day. And of course, “Now faith is the substance of things hoped for, the evidence of things NOT SEEN.” (Heb. 11:1)
I try to nourish, appreciate, and highly value both my physical body AND my spiritual self now, thanks to aplastic anemia. Before this, I really didn’t know what my purpose in this earth was. Boy, do I know now!