So That is What’s Going On

It was now time to start the second semester of college, January 2008. I was not driving anymore so my mom had to take me and pick me up. My doctor appointments had not stopped and I was actually going a little more because doctors were still testing my eyes. I was still so weak, having to use a cane to walk and rolling my backpack. I tell you I was stylin’. When I say weak, I am referring to the total muscle loss I had within my entire body. I couldn’t walk up and down stairs without holding on to something with both hands. I remember walking up the walkway to the building that held my classroom. It looked flat. I had never had a problem walking it before. This time, though, with not much leg muscle, it was a challenge. Turns out it does have a slight incline. I could feel every step I took like I was climbing a mountain. When I reached my classroom, I was out of breath. I was also having issues with my blood pressure. When I would stand it would drop and I would get extremely lightheaded. Standing would be a slow and delicate process to make sure I did not pass out. But with all of that going on, I was still going to class every day. It never crossed my mind to quit and just stay at home. I started and I was going to finish.

By mid April my vision loss was being understood. It was clicking with me what I was seeing, and the doctors were understanding what was happening. After getting a second, more precise visual field test I was finally understanding what I was seeing. It was so hard to explain. Nothing was blurry, fuzzy, or cloudy, it was just completely missing, but there were random spots I would see off to the side. The visual field test showed me that I was only seeing the central portion of my vision and small spots on the peripheral vision. It was like donut vision. I could see in the middle, nothing around that, and spots on the outside of the donut. The center was like looking through a straw. There was a professor at Ohio State University that was doing a study pertaining to my case. UNC collected lots of my blood work, sent it to him, and he used it in his study. He concluded that a specific antibody was causing the damage to my eyes.

Between my bone marrow transplant doctor, eye doctor, and doctor at Ohio State University, it was determined that my vision loss was a result of my second bone marrow transplant. I was diagnosed with Autoimmune Retinopathy. When I received my donor’s cells, there was always a risk of my body not liking it. The identified antibody in my body saw something in me it thought should not be there and began attacking it, killing it off. That particular cell that the antibody was attacking was in my eyes. Those cells were in my retinas and it was as if I had holes eaten in the retina. I learned from my eye doctor that there is no fix for retina damage, but hopefully in the future there would be treatment.

Of course, if something was going to happen, it would happen to me. Any side effect that could occur from medications - I had. I think I created side effects to meds, and if there was a risk of infection, I would have it too. This was just something else for me to add to my list. This eye problem after a bone marrow transplant had never happened to anyone before. I was the first and only. Now my case is written up in a medical journal.

Now, since we knew what was going on, the next step was to stop the progression. There was nothing to repair damage already done, but doctors could try to stop the progression. Stay tuned for the next blog post where I will share the treatment plan and other occurrences.