Today is my first day back at work after being out for ten days, four of which were spent at DeKalb Medical Center for the treatment of suspected PCP. I say "suspected" because the bronchoscopy done at the hospital came back "clear" (does my insurance company still have to pay for this?). Since I never seem to have a textbook case of anything, I want to share with you gentle readers some of my experiences during the last few weeks.
This case of pneumonia was presented in late January as fatigue. I was sleeping twenty hours per day but had no fever or coughing. In fact, it wasn't until the second chest x-ray that there was any indication of pneumonia. Interestingly, we did a complete CBC with CD4 count and viral load to see if anything would show up. It didn't. I had one of my most favorable reports with even a decrease in my cholesterol!
We began treating for both bacterial pneumonia and PCP with daily IVs at the doctor's infusion center. I really didn't want to go to a hospital if I could avoid it. After over a week of this treatment and still short of breath, I called my friend, Lance, who is a nurse at Pride Medical and said I was ready to go to the hospital. Apparently, so was the rest of the city of Atlanta. There were no beds at any hospital except DeKalb Medical Center. At this point I didn't care where I was sent.
Arrangements were made for me to enter though the non-emergency entrance to be admitted. However, when I arrived there the receptionist said, "Oh, you need to go upstairs and register there." I told her that unless she wanted to push me in a wheelchair with oxygen, I was going to lie down right there and die. She made other arrangements.
From here I was placed in a negative airflow room without windows. Now this would have been fine except I had to wait in this "closet" for over six hours until an isolation room could be vacated and cleaned. I have cleaned a four bedroom house in less time.
After waiting and not eating for some eighteen hours, I was rolled to my room and given a cold tray of food. Thank God for friends who brought snacks in that evening.
While there I saw at least five different doctors, none of whom communicated with each other. I had to demand Benadryl with my IV of Bactrim to be able to tolerate it. The nurses were afraid to bother the doctor after 10 p.m. I said that I would be glad to call my doctor at home and have this ordered. She looked aghast as I dialed my doctor's home phone number.
Now Bactrim IV is not unlike battery acid running through your veins. I could feel the drug wash through my veins and lungs. It was metallic and felt most toxic. This was followed every six hours with Levequin IV. What was so frustrating, though, was that after waiting for over an hour on three different occasions for the nurse to flush my IV line, I began to do my own flushes. I knew they were busy, but after having four lines installed in my arms, I knew I was running out of veins (and patience). The nurses finally stopped responding to my announcements that my IV had finished and presumed I was self-sufficient in managing my own health care.
What kept running through my mind was all of those people who are not as self-sufficient or knowledgeable about their own health care as I am. Not everyone knows how to do their own IV flush or wants to. I didn't either! The care I received was sub-standard and bordered on dangerous.
I had to remind nurses, techs and other staff that they may not touch me without first washing their hands and donning gloves. One evening at 4 a.m., when some technician came to inquire if my bowels had moved in the last six hours, I asked if she had ever heard of universal precautions--or soap and water. She looked puzzled. I explained that she could be bringing staph from the last patient she touched into my room and mouth by not having fresh gloves on before sticking that thermometer in my mouth! Now you know why I dislike hospitals.
I am still not completely over this bout of pneumonia. But I will continue to pursue treatment until I am. Unfortunately, we must take the lead in demanding aggressive and appropriate treatment. Get smart, demand what you need and when told "no" by someone providing your health care, tell them that is unacceptable. You will be surprised that they often will begin to move quickly. Be well.