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.