After Thanksgiving, I was tired. I thought I was just making up for lost sleep from the prior week with family in town. But, no matter how much I slept, I couldn’t overcome my fatigue. I would bring my kids to school and then go back home for a nap. I would then sleep until my alarm would go off at 2, to start getting ready to pick the kids up. Even after all this rest, at 2 pm in the afternoon, I still was so tired. I could have slept even longer. This went on for several weeks.
I was tired driving. The drive to my sons school, 30 mins there and 30 mins back was dangerous. I would fade. I was worried about falling asleep at the wheel. At the gas station one afternoon, pulling in, I misestimated the depth of the turn and hit one of the poles. I started having my husband take the kids to school for me because I felt it wasn’t safe for me to be driving. He usually has to be at work an hour before we get the kids to school, so he had to miss meetings in order to do this, but I didn’t really know what else to do.
One afternoon, I woke up and I could not get out of my fog. As I was walking around the house trying to wake up, trying to find a way to get out of this fatigue, I remembered something. Like almost from a past life. I am anemic. My blood must be low. I have a blood disease.
When I was 19, after years of fatigue and sickness, my body started to shut down. My mom took me to the hospital, and it was a good thing she did, because my body was dying. Upon admittance to the hospital, I was told, another hour and I probably wouldn’t have made it. I didn’t need to be told this. I knew my body was shutting down. I could feel myself fading, and I had to make an effort to continue.
After many months of testing, I was diagnosed with a blood disorder. Spheroctyosis. This means that a large portion of my blood is misshapen. Instead of the flexible disc like shape the red blood cell should have, mine are like over inflated balloons. At the smallest nudge, they are destroyed. My body had tried it’s best to overcompensate for this up until my hospitalization, but it stopped. A case of mono made my body weaker. This caused me to catch just about every typically benign virus under the sun, and in my weakened body, they were in essence killing me. My body was not able to produce blood to make up for the deficit any longer.
When they first tested me, they thought my panels had produced false positives. They didn’t think it was possible to have that many viruses in your body. Steroids helped my blood to produce in rapidity. My body was finally able to heal and fight the infections. My spleen was removed several months later. A spleen helps to fight sickness by destroying misshapen blood cells. My blood cells were being destroyed, because even though they were healthy, albeit fragile, they were not the correct shape. These were the ones that actually made it to the spleen and were not destroyed just bumping around.
Luckily, not all my blood is round spheres. Only about 75%. Without a spleen, I need many vaccinations to guard me against certain infections. But without my spleen, my blood cells are not constantly being destroyed.
I have lived fairly healthy since my spleen was removed. Even without my spleen, my body still has to work hard in order to produce extra blood cells. They are still destroyed in my body, just not as much.
It’s funny because after living so many years healthy, my mind has almost forgotten that I have a blood disorder. All of the memories seem as if they belong to another life. Except for when I smell medical tape. I was at the doctors office waiting for my physical when I smelled medical tape. My heart started beating rapidly. My watch was going off to warn me about my spiking heart rate. They took my blood pressure. Normally having such low blood pressure, that I black out when I stand up, it was rocket high. The body remembers where the mind forgets.
My blood disorder is rare. 1 in 250,000. My kind is even rarer. It is usually genetic. Mine, is a spontaneous mutation. That occurs in 1 of 5 cases.
Because my case was so unusual, and because I was being treated at a teaching hospital, my case naturally excited my doctor. ‘Would I like to donate my spleen to research he asked me excitedly?!’ ‘Sure..’ What else would I do with it?
He wrote a paper about my case, and informed me regularly just how interesting my case was.
At appointments, he would make sure that I took notes, so I could understand everything about my rare illness. In my being a normal human being, I looked away from his paper once, and I was scolded properly for not caring about my illness and taking responsibility to learn about it.
Six months post op, after the paper was written and published, I was at a follow up appointment. ‘Can the Dr bring in a student?’ the nurse asked me after taking my vitals. I don’t mind, I told him. Bursting through the door shortly after was a very excited student. ‘I am so excited to finally meet you!’ She exclaimed as she shook my hand. ‘I have heard all about your case! Your spleen, I can’t believe it was really 8 times the normal size. Do you know how rare your case is? I can’t believe I am actually meeting you, we just have heard so much about your.’
I sat kind of stunned as I realized I had acquired a fanbase. And an apparent groupie, who had somehow convinced the doctor that she would be useful at this appointment. She wasn’t. I guess I can’t blame her though. It was an interesting case. My spleen was 5 pounds. It had displaced my kidneys. She I am sure went on to become a very successful doctor.
To follow through on my original story though, lots of b-12 shots and folate later, I am feeling less tired. An appointment with a hematologist scheduled, and it’s amazing how something that was dormant for so long feels like it never left me.