Article written by Yu/stan/kema, chronic illness., Difficulties, Immune Disorders., IV infusions, Lessons learned., Living with, Part one
When I was first told I would have to have infusions for the rest of my life, because I was low on antibodies, I knew someone had made a mistake. I was in the hospital with pneumonia at the time. My Dr. said, because I was older, my body had stopped producing enough antibodies to fight off germs. He remarked, ” that happens a lot after the age of 60.” I went home, and he did more testing. The test results indicated I did have something wrong with my immune system.
He told me there was only one treatment for this illness, an infusion every month that would restore the needed amount of antibodies to fight off infections and other diseases. I could refuse to have the infusions, live in my house, and never go out. I would still be at greater risk for cancer, and some other illnesses. I loved going to the movies, eating with friends, going shopping, but that meant leaving the house and putting myself at risk to catch diseases.
I went through periods of depression, severe fatigue, mental fog, and felt miserable. My energy level was steadily falling. I couldn’t do the things I use to do. I could not concentrate and reading was difficult.
Being able to do my job became impossible. I worked with people and people could get sick and carry germs. To do my job took concentration and energy which was fading fast. If I wanted to have a life, I needed to make the tough decision of having treatment.
I went for my first infusion and had severe side effects. I ended up being allergic to the solution. I had to wait several months, before trying a different one. This time, I had to drive a distance to a hospital infusion center. I went by myself and went into a room full of chair recliners.
The chairs were in a semi-circle facing the nursing station. There were about fifteen chairs filled with people. Some were getting transfusions of blood, others were given solutions for different diseases like Cancer, Multiple Sclerosis, Auto-immune diseases, and Immune disorders. Some infusions took an hour or two. Others took four hours or more.
I had to remain in a room for four to five hours. I had an IV. placed in my arm and had to keep my arm still so I didn’t set off an alarm that was annoying and loud. A nurse had to come over and fix it before the noise would end. Most of the patients slept during their infusions. I, of course, did activities to relieve my boredom and distract me from it all. I never slept during the day and wasn’t about to start now.
It took me a year and a half to work through the denial and grief I felt about having this illness. I grieved because my lifestyle had changed so much. I felt weak, helpless, and defeated. It took me another year to work through my anger.
I had a hard time getting my body in the car to make the trip to the hospital. I would sit in my car before going in. It would take a while to climb the stairs to the hospital. I would carry on a two-way conversation in my head: “I don’t want to.” “You know you have to.” ” It isn’t fair. I’m not doing it.” ” You know you have to if you want to feel better.”
It’s been three years since the first infusion. I am learning more about acceptance. I walk right into the infusion center now. I go every two weeks because I need a slow infusion rate. I’ve been working through my anger. I was angry at God, myself, and the whole world.
I’ve dealt with a lot, on my own, with the infusions. Therapy has helped me cope more effectively with stress and accepting things I can’t change. I have more good days than bad. In Part Two, I will share a day in the infusion center, and ways I have grown from it all.