PCP (the pneumonia, not the drug)

I am now a little more than two and a half weeks out of the hospital. I was there for two weeks being treated for a type of pneumonia called PCP (Pneumocystis carinii pneumonia). It's considered a fungal pneumonia, but I was informed by Dr. Wiskocil, my Rheumatologist, that it's actual a parasite. Anyway, most everyone has it in their lungs...but their immune systems keep it in check. When you are on high doses of immuno-suppressive drugs like I am sometimes it can grow and take over your lungs. It's especially prevalent in the HIV community. The scary thing about PCP is the mortality rate - especially among people with auto-immune diseases, such as myself. People often die from PCP when they have my condition. In fact, I was fully aware of PCP well before I got sick from it. In my first appointment with my rheummy, I asked when was the last patient that he lost to Wegener's. He told me it was eight years ago and the patient died of PCP, not actually Wegener's. He said that was more of the norm. So Imagine my fear when I learned that I had PCP.

The way it happened is that a few weeks ago I got sick with a fever. Getting a fever with my condition is a pretty bad thing. I had actually been feeling a tightness in my chest a week prior, but had attributed it to heart burn (pretty common with prednisone use). It was a saturday, so I called Kaiser and spoke to the advice nurse. I explained my condition (as I always have to do) and she got me in to see a doctor in the weekend clinic. The Dr. (who was Dr. Banda - a really good doctor) had me do a chest xray and a bunch of blood tests. The xrays looked fine. So she called my rheummy and they decided to send me home with some heavy antibiotics and wait and see. A couple of days later I was still feeling pretty bad, had a fever, and noticed that my symptoms matched many of the symptoms of PCP - so I emailed my rheummy concerned. He sent me in to see Dr. Morcos (my pulmonologist) who said that he was 99% sure it wasn't PCP, but that he would do a bronchoscopy anyway since my O2 level was pretty low (hovering around 90%). The next day I went in and he did the bronch - which was pretty easy being my second one.

The next day, my fever spiked to about 101.9, I emailed my rheummy (surprisingly enough, email is the quickest way to get a hold of him). I got a call about an hour later from Dr. Wiskocil stating that he had gone to check the results of my bronch and that I was positive for PCP and that I needed to go to the hospital to start my antibiotic treatments. Needless to say, I was freaking out a bit. I called Anne-Marie, got in the car and she drove me to the hospital.

I spent two weeks in the hospital. For a few of those days things were pretty rough..although I guess I didn't realize how rough. The doctor talked about moving me up to the ICU so I could be intubated. The problem with intubation is that Mortality rates for PCP go way up when you start including intubation. I wanted to stay breathing on my own (with the help of the oxygen tube on my nose). ICU nurses started stopping by my room so I could meet them. The hospital Chaplin came by to talk to me. I felt bad but I didn't feel like I was dying. I guess for a couple of days the doctors had a different opinion? I'm not sure...but it was all very unnerving.

After two weeks of harsh antibiotics, harsh reactions to the harsh antibiotics, and being stuck in the arm by the barbarians from the lab more times than I can count (5 times a day until I had a PICC line put in), I was suddenly released by a kind doctor who thought I would do fine at home. I went home with oxygen which I used for the first week home. I am now off the oxygen - but I still feel very weak. I'm going to be on disability until the end of October. I will go back to work then. I only got a week of work in. I hope I'm feeling up to it by then. I think I will be fine.