After bing infoe 6 days with what we thought ws a "cold" on top of this Lupus
Pneumonitis," Tehy've confirmed toay with CT scane that I have:

Pneumocystis carinii pneumonia (“PCP”) (The following bit is from the Johns
Hopkins excellent web sie on "Vasculitis which is what some of my Doc's want to
call this. It all gets treated the same way so we don't spend a lot of time
arguing about the name....)

Pneumocystis carinii is a fungus that resides within the lungs of most people.
People with intact immune systems have no trouble keeping the organism at bay.
In patients who are immunosuppressed, the organism can cause a serious type of
pneumonia: PCP. A few years ago, PCP was the most common cause of serious lung
infections in patients with AIDS. Because of advances in the treatment and
prevention of this condition, PCP is now a much rarer problem in AIDS.
Similarly, PCP may also be prevented in patients with vasculitis by having
patients take certain types of antibiotics daily or every other day. The
antibiotics most commonly used for this purpose are
trimethoprim–sulfamethoxazole (Bactrim, Septra) or, in patients who are
allergic to sulfa medications, dapsone.

Now, my interpretationof the whole thing (in my case) of my lung disease:

Oxygen saturation levels have to do with how well your blood, once
pumped thorogh your heart the into the lungs, with freshoxygen which,
is then sent as fresh, oxygenated blood through the arteries (under
high presure), then comes back to your heart once the organs and other
cells get their share of th fresh oxygen that they need to survive. It efects
the
health of all your organs right down to your skin and you mental abilities
(that's where the "Your mind is shot" compliments I get  came from).

The "system," BTW, is identical that to that for a Ford hi/low pressure
power steering fluid system (which is why they almost always leak so
bad.).

My lungs, because of damage by the Lupus and Vasculitis (I have 5
different diagnosis for my lung disease. We went with Lupus cause it
guaranteed me the Social Security) the treatment is the same for all 5),

My oxygen Saturation numbers(SATA) sometimes drop from the normal 98  too 100%
(your system) to where I require approx 4 litrs per minute (LPM) of
supplimental oxygen to keep it around that magic numnber of 88. Fall to 88% or
below and you "qualify" for an oxygen therapy prescription which I did 2 years
ago. Well, for the past 2 years year, I have required between 4 to 6 LPM to
keep my oxygen "SATS" at least 88 or above "at rest," or over 70 at exertion
(exertion for me is like running my self-propelled vacuum cleaner).

When I get these Lupus "flare ups"  they usually put me in the hospital
because my SAT numbers fall to the low 50's and, at that  point, I should
either be in colvulsions, be comotose or dead. At this point I usually get in
the car and drive 80 blocks to the hospitl and check in. It blows em all
away every time drive myself in to the hospital beause I''m not supposed to
be coherant enough to do it.....(it gets me a lot of attention).

When I called 911 Sunday at 3:00 and got the ambulance, I had just walked
from my bed to my master bathroom (10 steps) and my SATS had fallen to 38
and I'd almost passed out.

Evidently this chemotherapt I've been on since last April (Cytoxan), has a side
effect, a specialy type of pneumonia called "PCP" (for short). And I got it.
It's very treatable if caught in time but they need me to stay into the
hospital until my SATS all go back to my "baseline" which is between 88 and
92.

I've been lucky. This has been my only "cold" since I first got sick over 3
years ago. And now it has turned into this terrible really fatal pneumonia.
They ave this special antibiotic called Bactrim (you only haveto take it 3
times a week) that the doc here said, If you can't afford the Bactrim
($35.00/month) don't take the Cytoxan ($300.00/momth)

The only reason I'm telling you all this is that I know there are a few here
with Lupus with lung involvement and that you're all smart enough to understand
it, without flipping out before investigating it. Look up that Johns Hopkins
Web Site on Vasculitisand/Lupus. I don't have th address handy but they're
excellent articles and both easily found on a GoogIle search (or any other
decent search engin for that matter.

I'm out of ICU now but am told I'm gonna be here a while. Will check in later.

Love to all,

Michael Roeper