What exactly do I see?

There are multiple parts to my visual impairment. One is the visual field. Visual field is the entire area you see when an eye is fixed straight at a point. If you hold both arms out to your side that is 180 degrees. Most people can see their hands if they are holding their arms almost straight out to each side while looking straight ahead. I have to bring my hands almost completely together in front of me before I see my hands. A person is considered legally blind if their visual field is less than twenty degrees. I have about a five-degree field of vision. It is like looking through a straw. I explain how much I see like a flashlight. The light beam goes out as it gets further away from the flashlight itself. When the flashlight is closer to an object, the light beam is smaller. As you move the flashlight further away from an object, the light beam shines in a larger area. That is how my vision is. The closer I am to what I am looking at the less I see. I need to be further away so I can see more. Usually If I am talking to someone at an average talking distance of a few feet, I can only see the area of one of their eyes or their mouth. If I am several yards away from a person, I can see their entire body.

The second factor to my vision loss is the rod and cone damage. Rods and cones are responsible for eyes seeing light, dark, and color. To me, this is the worst part of my vision loss. If lighting is not just right, everything is just completely dark to me, not just dimly lit. It is disheartening to go into a restaurant I have been to many times before seeing perfectly fine, and now it is so dark I find it difficult to see my plate. I always ask for a window seat or a table directly under a light. Even if I had a normal visual field, if the lighting isn’t just right for me, I can not see anything. Even at home in my den it is dark now. I am unable to see a friend or family member sitting on the couch across from me. With the rod and cone damage, high contrast is very helpful – white paper on a dark surface, black backgrounds with white writing, or a black plate with light color foods such as potatoes.

It is hard to explain what I see because surroundings and situations are different every minute. One thing I have never thought about when I had full vision is that everything you see is connected to something else within a spatial area. A tree is attached to ground, the branches meet the sky, and the sky runs into clouds. A hand is connected to an arm that is connected to a body. That body might be sitting on a bicycle seat attached to a bike that is on the ground. When you look at things like that as a whole picture you do not make that connection, your eyes do it for you. My eyes do not do that anymore because they only see the donut hole in the center and a few spots on the outside of the donut. If I am looking for a swing hanging in a tree, I can’t just look at the tree and see the swing. I may spot the sky and have to search for the tree. Then I have to move my eyes around to hopefully find a tree branch. Now I need to figure out if that tree branch is on the top, left, or right of the tree. I will have to follow the branch to the tree trunk, then scan my eyes all around the bottom branches to find a hanging swing.

I remember going up to the bone marrow transplant unit once. Mom had dropped me off at the door and headed to the parking deck. I approached the elevator and attempted to press the button for the floor I needed. I held my hand out to press the button and could not find my own finger. I had to scan my eyes around and search for it. Once I found it, all I could see was the end of my finger. I could not see my hand or arm to know where my finger was in relation to the elevator button. All I could do was keep my eyes focused on my finger and move it around until I saw it over the elevator buttons. Because my finger tip looked like it was floating in the air, I did not know if the buttons were to the left, right, top, or bottom of my finger. It was such an odd feeling to know my finger was sticking out to mash the elevator button, but I could not see it.

It is so hard to explain and understand if you do not see how I see. I do not realize I am not seeing certain things. I am still seeing one entire picture of my surroundings, only part of it is missing, but I do not realize it is missing. It looks to me like I am seeing everything.

Right now, as I am typing this story, I am sitting in my recliner, the TV is on in front of me. There is a window and chair to the left of the TV. As I look at the TV, I see the TV and the computer in my lap but I do not see anything between my laptop and the TV. I do not see the chair to the left of the tv or part of the fireplace to the right of the tv. When I am looking at the tv I do not realize I may not be seeing something that is on the floor between me and the tv because that area is just not there. I see my keyboard and my tv so I have no reason to think anything is between the two objects.

I have tried to explain what I see, but it may have confused you more. I have to search to find things with my eyes. Once I find it, I see it clearly. The sun needs to be behind me and lighting needs to be good. I am so grateful the doctors figured out what was happening and prevented complete blindness. I am grateful for what vision I do have, and pray every day to keep what I have left and for a miracle to heal my eyes.

Oh What a Process

Wow, this has been a journey, and it was not over yet. I was in nursing school and diagnosed with cancer. I finally recovered, returned to nursing school and relapsed. Then I recovered from cancer a second time, returned to college, and BAM something completely new occurred. I was losing my vision. What was going on? How much can one person handle?  Evidently a whole lot.

School was going well, and I was passing all of my classes. I was feeling good with only a few issues that needed improving like strength, energy, and endurance. My main problem at the time was my vision. This problem needed fixing before I was completely blind. My doctor put all the eggs in the basket for the treatment plan. There were only three treatment options for my specific eye problem, and I was doing all three. My three treatment options were prednisone, IVIG, and apheresis.

Me and prednisone were not friends. I had taken it a lot over the previous five years and it was the cause of many problems that I had. It is one of those medications that the benefits outweigh the risks. My bone problems are the result of taking high doses of prednisone. It inhibits your sleep, increases hunger, causes swelling and chipmunk cheeks, and makes you very moody. Plus, all kinds of medical problems including cataracts, which I had. I was not excited about taking prednisone, but if it could help my vision, I was willing.

The next treatment was intravenous immunoglobulin (IVIG). This is an IV medication that I was already receiving for my immune system. My eye and bone marrow transplant doctors worked together to give me the appropriate dosage for both issues. IVIG is given intravenously over several hours. It is an all-day outpatient visit at UNC. I still receive this medication for my immune system about every 3 to 4 months. I will most likely need to get it forever.

The final treatment decided upon was apheresis. This was not an easy pill to take or IV med I could do in one day. This was a two-week process that turned into more. Since it was an antibody causing the damage, doctors wanted to get rid of the antibody. There is no way to remove one specific antibody therefore this process was going to remove all of my antibodies, good and bad. For this process I had to have a surgical procedure to place a temporary catheter in the large vein of my neck. When I came out of the operating room, I had a large IV line in my neck with layers of gauze and bandages protecting and stabilizing the line. It was very fragile and could not get wet. I was still going to school and it was not very pleasing to look at. Thankfully this was during the winter months so I could wear turtlenecks and pullovers with a high neck to keep it covered. For the actual process, mom would take me to UNC three days a week for the apheresis procedure. Nurses would hook me up to a machine that would take my blood out of my body, spin out the antibodies, and return the blood to my body. I remember my lips would tingle and the nurses would give me tums because it was a sign of low calcium. The entire time while I was attached to the pheresis machine I had an odd feeling. The machine was large and would not role with me if I needed to use the bathroom like an IV pole. Luckily, I did not miss too many days of school during this process because my classes and my appointments were mostly on different days of the week. After the two-week process had stretched out to three or four weeks, I had completed the treatment and doctors were able to remove the line from my neck.

None of these treatments were guaranteed to work because, remember, I was the only person this had happened to. Thankfully, something worked because the progression stopped. Unfortunately, over the last couple of years my vision has gotten a little worse, but they are doing more research to improve retina damage. The doctor says in my lifetime they could have a treatment for retina damage. 

Be grateful for what you have. You can be the richest of the rich or the poorest of the poor, but it does not matter. You could be the healthiest person in the world, and that does not matter. Misfortune, sickness, disease, or tragedy can strike at any time. Appreciate your health and wellness.

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.

Is the 3rd Time the Charm?

August 2007, I was heading back to college. My first two attempts were in the nursing program. By the third time, I felt like nursing school was a curse. Every time I entered; I was diagnosed with cancer. Plus, I had spent enough time in the hospital over the 3.5 years and been to doctor’s appointments that I decided I did not want to work there the rest of my life. Initially in high school when deciding on the path I wanted to take, I knew I wanted to do nursing or something with math. I was always good in math and enjoyed it. Ultimately, I did want to be a nurse, but by 2007, I took a left turn right into business school. I debated on accounting or business administration, but decided on the broader degree of business administration.

During this time, I was still very weak. When I had my second bone marrow transplant, I had just had hip surgery. I had not recovered when I was admitted into UNC hospital for a 68 day stay. Part of that time I was out of it and did not get out of the bed much. It does not take long at all to lose muscle in your body. I entered college walking with a cane rolling a backpack. I was the 24-year-old, old lady walking the halls.

The first semester I took a light load of classes. I was still traveling back and forth to Chapel Hill for doctor’s appointments and infusions. Some days we would go to Chapel Hill, come straight home, and I would head to Clinton for class. It is amazing the different perspective you have on college when you go back at an older age. College is expected when you graduate high school. Students have already completed 13 years of school. By the time students get to college after high school, they do what they need to get through. I think they are burned out on school.  When I returned years later, I actually read the chapters in the textbooks. I was interested in what I was learning. Don’t get me wrong, I learned a lot in nursing school and tried, but 2007 was different. My grades were great, which they always were, but it was easier to get the good grade. I looked forward to tests. Straight out of high school I dreaded tests. I wanted to see what I learned. It was satisfying to prove to myself that I could do it.

Several months prior to school starting and during school I was noticing something different with my eyes. I could not figure out what they were doing, but I knew something was not right. I was seeing like normal, but there were spots that I was not seeing anything. I remember going to my cousin’s apartment in Wilmington during the summer. She had a small sunroom type room that had all windows on a wall. She was standing in front of the windows talking to me and I could not see her. All I could see was a silhouette of her. I couldn’t see what color she was wearing or anything. The sun had blocked everything out but a black outline of her body. I knew then something was wrong.

In early to mid November of 2007, I went to my nephew’s birthday party. I knew I was having trouble seeing at night, and I told my stepmom I may have to stay with her. The party was over and I thought I would be okay to drive home in the dark. I headed home and I thought I would never make it. My heart was pounding. When I came to a stop sign, I was having trouble seeing what was coming. My car windows were tinted and I had to roll the windows down. As I got closer home, I had to make a left turn onto another road. I was going so slow looking for the road with the window down, my nose in the windshield, and both hands gripping the steering wheel like an old lady. I knew when I made it home it would be the last time I would ever drive at night and it was. When it is dark, I can not see anything but black. It is not blurry it is just dark. I could see the light from headlights but that was about all.

The first semester of college was coming to an end. I was going back and forth to my bone marrow transplant doctor, orthopedic doctor, and now an eye doctor to figure out what was going on. The eye doctor in Clinton did a visual field test, among other things, and the results were not too good. They referred me to an eye doctor in Chapel Hill and my vision problem was becoming clearer.

On December 12, 2007, I was driving to Clinton for a final exam. A couple of miles after I left home, I rounded a slight curve and the sun was blinding. I fumbled with my sunglasses and pulled the sun visor down to block as much sun as I could. I slowed down to a granny pace, and again, my heart was pounding. I knew on this particular curve there was a church that sat down very low on the right. I glanced in my rear-view mirror and a truck was approaching. I did not know where I was on the road. I was envisioning myself driving off of the road, down the embankment, and flipping over into the church parking lot. Thankfully God was on my side and I was able to see the road again. I continued on to school for the final exam. When I finished my test, I left Sampson Community College to head home.  My next unexpected hurdle was the stoplight. I knew in front of Wal-Mart there was a stoplight, but I could not find it. I was moving my eyes all around searching for a red or green light. Finally, I saw it. What I was seeing was not blurry. What I could see was clear. The problem was parts of what I was looking at was completely missing. I could not explain it. I did not know what was going on.  My grandma lived in town and I decided to make a detour to her house. I knew when I made it to her house that would be the last time I would ever drive again, and it was. I called my mom when I got to Mama Vann’s house and told her she was going to have to come get me. That was hard, but I knew I could not make it home. We take simple things that are so common like driving for granted. When it is taken away from you, you realize how fortunate you were to have had it. Be thankful for the things you have, whether it be your health or something tangible. Consider them blessings!