Transplant, Isolation, Apartment

Back in 2003 bone marrow transplant at UNC Chapel Hill was different than it is today. For one, they know a lot more now, but also, there is a new cancer hospital. Although the newer bone marrow transplant inpatient unit is not in the cancer hospital, it is in a new location and much larger. Most of the rules are the same as far as germs and risks for infection, but the facility has improved for the inpatient’s health and safety. When I had my transplant there were so many restrictions. Once I walked into the room on the first day, I was not allowed to leave the room until weeks after my transplant. In the new unit they have special ventilation that allows the patients to go outside of their rooms into the hall. I must say though, I have only stayed in the newer unit for other reasons, so I don’t know much about it during transplant.

The transplant unit was behind a closed door with a sink outside for everyone who entered to wash their hands. Hands also had to be washed at another sink before entering each patient’s room. My immune system was so weak, doctors would not let me even walk into the hall until my labs reached a certain number. Everything’ that was brought into my room had to be wiped off with alcohol, that included magazines, food, and the new pillow I had to take still in its plastic. All the transplant rooms had a refrigerator and a treadmill. The transplant rooms had lots of extra things because you are isolated in it for so long. It was critical that bacteria did not get to me, so as little interaction with others was best. During that time, I really did not have hardly any visitors. My dad and stepdad and sister would come, but if they had been around anyone sick, they were not allowed. I was so sick at times I did not want visitors.

The unit had a lot of “amenities” to keep you occupied and active. There was a recreational therapist who would come by and bring anything you wanted. She would play cards or games, bring craft supplies, weights, a computer, even a Nintendo Wii. The treadmill in my room did not get used much. They would push me to walk on it, but I was so week I didn’t make myself do it. I am still paying for it today. My muscles today are still very weak, but there is a lot more to my story that has contributed to this weakness.

Days then weeks went by and my mom and I were still in the hospital. Every few days I continued to get blood and platelet transfusions because my marrow was not making it efficiently. Finally, my cells began to produce. My red blood cells were going up. My neutrophils, which show immunity, were going up, and I was able to walk out of my room. But you know those masks so many people are having to wear now? Those that so many do not like, think they do not work, or can’t breathe with one. Well, I had to wear one just to walk into the hall of the bone marrow transplant unit. When we were finally released to leave, I had to were this mask everywhere, even outside. My immune system after transplant was so weak that being outside around construction sites or dirt was a risk for bacteria. My house is surrounded by fields so a mask outside at my house was mandatory. We couldn’t even open the windows in the house without me wearing a mask. When you have been through what I had, and knew the effects of getting an infection, you did everything you had to do to prevent it. That is why wearing a mask and not being around crowds for COVID is no big deal for me.

I was finally able to be discharged around mid November, and we still could not go home. We moved into an apartment in Durham for the remainder of the 100 day process. I had to be within 10 minutes of the hospital. Everyday momma took me to UNC for lab work and see the doctor. As things improved, we were able to only have three day a week appointments. It seemed like for every return appointment I was getting some type of transfusion, IV med, or shot. I did pretty good while In the hospital and got worse during the time period I was in the apartment. I did not have an appetite. I remember eating a lot of chicken and rice. I had infections and had to give myself IV antibiotics. Nausea and vomiting were often occurrences. Through it all, mom was doing her best to make me feel better. Whatever I felt like I could eat she would cook or go get. We would go to the gym at the apartment when I felt like going or walk the sidewalks. My dad would come visit and bring whatever I wanted. When I was in the hospital, he would always bring me food when he came. Mom would usually leave when he came so she could have a break and do something for herself. Daddy would get me out too. We would ride around Jordan Lake and walk down to the water. Me and momma and daddy did all kinds of things to stay occupied, but in the car, we always had a basin and towels.

Eventually after about 4 months in the apartment, I was approved to go home. The 100 days had turned into almost twice that. I think at this time it was early April 2004 and I was so glad to be home.

The remainder of the year I continued going to Chapel Hill for appointments two or three times per week. I would get an infection here and there spending a few weeks at a time in the hospital. I do not remember a lot of it, but I know I made it through 2003 and 2004. People say you are so strong, or you are the strongest person I know. I am no stronger than anyone else. You never know how strong you are until you are forced to be strong. I just do what I have to do to survive.