has been marked by chronic diarrhea. He has chills because he weighs less than one hundred pounds. He is 41 years old but looks 14 years old. His voice is very deep and masculine but he struggles to talk because it just takes too much energy. He rings the call button for a nurse to come help change his diaper. I go outside because the nurse is taking awhile. The male nurse tells me, 'he calls all the time. I can't go every time he calls.' I calmly reassure the nurse that I know he is busy but this young man should not have to sit in his feces all day either. And he has diarrhea all. day. long. The nurse becomes angry and storms off. I ask another nurse who is more patient to please ensure B gets changed. I call B 30 minutes later. He has not been changed. The humiliation in his voice is palpaple. "Don't come down here Keri, it's bad." I tell him I won't come but I ask his permission to report his nurse. He agrees, "only because he did this last time too." I tell him that if he gets one bit of harshness or aggressivness from the nurse, he needs to call me. He agrees.
Two days later I tell B he has to go to a nursing home if we ever have any hope of getting his diarrhea under control. He drops two, huge, crocodile tears. He asks me if it's all "old people" there. I tell him, no. Sadly some of the guys there are like him, young, trying to recover from the latest assault on their bodies by AIDS. He begs me to let him stay in the hospital for the 3 month course of IV antibiotics. I tell him he cannot. I am honest. First, he could get a hospital acquired infection and get worse. Secondly, insurance won't pay. He has to go. He is angry with me. I have known him for 4 years and he has never been angry. He yells at me to get out.
I get a voicemail with an apology from B. He says he is tired of nurses wiping his rear end. He is tired of nurses catheterizing him. He is tired of trying to change his own diaper, only to make more of a mess. He is tired of his mother helping change him. He is tired of the sounds of the hospital intercoms keeping him awake at night. He is tired of his IV bag beeping that it is finished, often 20 minutes, 30 minutes before any nurse is able to come turn it off. He is tired of watching his friends go to summer cookouts and celebrations while he lays in a hospital bed. He is tired of seeing the astonished faces of people who come in and see every bone in his body protruding. He is tired of the ulcers forming on his buttocks, constantly infected by his bowels. He is tired of being too tired to talk or hug a friend. He is just "so damned tired of AIDS."
Today I see B's name on the census. I count back the days and realize he should be nearing completion of his antiobiotics at the nursing home and should be going home soon. I pray that this is something quick and easy and he is finally able to go home. I get greedy and ask that he not have diarrhea this time, that he not be in pain. I got one wish, he is not in pain. He is on a ventilator, sedated. His lungs are full of pneumonia. He is septic. His primary care doctor is on the consult team this month. He is cussing as he goes through his chart, looking for any medication that he can change to save B. He has lost more weight. He weighs 84 lbs. He is 5'8. I talk to his mama. She says "Keri, make him DNR. Do not let them recussitate my son. Enough is enough. I will not put him through more." I want to agree with her. I do, clinically speaking. But I tell her that his doctor, who B loves, is really searching for something we can do. But if she doesn't want to do it, I will set up hospice. I walk away, saying a prayer that God takes B tonight. Please don't let him have to endure another person having to clean the ulcers that now cover his behind.
I walk down the hallway and take a deep breath. I feel my baby move, forcing me to smile. I smile, thinking of all the bad jokes B has told me, some of them so inappropriate. I think of his previously gorgeous curly hair, sad that we had to shave it. I think of him telling me that "as soon as I can stand up without s***ing, I am taking you dancing. I think of him telling me to sit down- that my husband will not think I'm attractive with fat ankles. I think of him telling me to stop wasting time with him and to go give my baby a doughnut. I smile at these things but then I slow down and think about AIDS. It's so easy to become desensitized to this disease. But today I'm a little pissed off.
I hate that in the past week I have looked into the eyes of a 16-year-old who first had to endure a violent rape, only to be raped over and over and over again by the horrors of HIV. I hate that she will not see her child grow up. I hate that there is a baby in the NICU without a mother. I hate that there is a mother in the waiting room preparing to lose her "baby boy". I hate that B's last years of life were tainted by the indignities of wearing a diaper and having to be constantly changed, all while his 41-year-old brain was young and ready to enjoy life. I hate that this disease so often means awful intrusions into the most personal parts of victim's lives, bodies, souls. I hate HIV. I hate AIDS.
Tomorrow I come in and check the census. I will see if B made it through the night. And tonight, I will pray about the hope that does, really does exist for my patients. Maybe I'll come back and write about that. But for now, we need to remember the absolute horror that this disease is and pray with all our hearts for the people who endure it.