27.9.06

I left my last entry on such a cheery note... You know, four is a number I really have never liked much anyway. In Japanese one of its pronunciations can be a homonym for death, and is thus considered bad luck or a bad omen by many.

Aside from personal and cultural stuff.... On the Glasgow Coma Scale (GCS or just Glasgow), four is not a number that one wants to score. The GCS is scored from three to fifteen, in 3 categories, based on stuff like whether the patient responds to pain, talks, is oriented, opens their eyes, etc..





I had been experiencing severe neurological symptoms for weeks, had had a bunch of infections (sepsis, pleural cavity, had a hemo/pneumo/junk-o-thorax.. After 7 surgeries in 8 weeks, my body was seriously in bad shape).. SO, they send in a new neurologist, who told me I was just having migraines, needed to pull myself up by my bootstraps kind of thing. (yeah, tell that to my GENETIC syndrome).. He accused me to my face of lying to him... Said to me with my mother sitting right next to the bed: "Well, MOTHER obviously seems to have an overactive imagination." <--- which was bull, b/c what my mother had been saying was all reasonable and supportable by fact and experience.
The pinnacle of his visit was when he told me it was "just migraines" all over again.. I demurely said, sitting on the edge of my bed, "I don't think..." And that was as much as I got out, of my sentence, because he walked over to me and put his face so close to mine that I could feel his breath and little drops of spittle hitting me as he spoke- He loudly and savagely said, "Guess WHAT?! I don't CARE what YOU think!! It's what Ithink that matters." He was gone and down the hall, and I was speechless- stuck to my room by 500000000 tubes and monitors.

This neurologist's visit came at a point when I felt desperate.. No one could tell me what was wrong with me or why I was so sick, beyond the surgeries and infections.. We had our hopes on him, that he would at least try. And instead of listening or 'healing,' he belittled and degraded..
I was SO depressed and felt so very hopeless, and more helpless than ever. I demanded to be discharged, and after some arguing and bartering with my neurosurgeon, I was discharged with the condition that I stay nextdoor.. Which was fine b/c my parents were already staying there.

Anyway... I went downhill. Christmas-Eve morning, I passed out and hit my face, blacking my eye and breaking open my lip. After that, it was downhill really fast.. I began falling that day, and by the end of Christmas Day could not walk at all..

How things progressed after that... It's all really fuzzy.. But I was taken to the ER in early January of 2006, almost totally unresponsive.. And that's where the GCS of 4 comes in....... and since then there's been so much, I just haven't been able to keep up the blog, and here I am one year later.. Diagnosed now with Lupus, overlap of Sjogren's syndrome, peripheral neuropathy, an as-yet unknown hepatobiliary issue.. and headed back to the hospital where I was only barely alive last year..

For now, I say goodbye.

11.9.06

she that riseth

Well. It has been too long... I don't know if I will have any readers left who will trust me to write and keep up the blog, after this disharmonious lapse.

I left on a breathless note, accumulating fluid around my lung as I scurried across the USA, trying in the brief lulls between travel to get the aforementioned (cerebrospinal) fluid at least temporarily stayed, and myself able to breathe properly..
When I finally did get a thoracentesis [think large needle between the ribs], the ultrasound found lots of scar tissue, which had formed all sorts of little "pockets" of fluid around my lung. The thoracentesis removed somewhere in the neighborhood of 1/2 gallon of fluid from the space surrounding my lung (called the pleural space.. The lungs sit in the pleural cavity, normally surrounded by a very small amount of viscous fluid, said fluid helping lubricate the membranes around the lung so we can breathe smoothly- The normal amount of fluid could be measured in teaspoons. -- After taking off 1/2 gallon, there was still more fluid in there, but the catheter clogged with scar tissue, so I was left short of breath still.

I'm not sure how many weeks, total, I spent not being able to breathe properly and in awful pain from all this- I was traveling, as said above, while all this was going on. When I finally got to my neurosurgeon, I told him that the pockets (or loculations) of scar tissue around my lung indicated the possibility of infection- Every fluid sample that had been cultured for infection had been taken from the reservoir in my skull, and I figured infection could be hanging out down in some pocket and not showing up in my skull- NOBODY would listen to me.. They told me I was fine, that my elevated sed rate and CRP meant nothing, that I would have a fever if I were infected, blahblahblah.. And dammit, I just *knew* I was infected, but not even my (beloved, wonderful, obnoxious, annoying, talented, amazing, ARGH!) neurosurgeon was listening to me this time..

So, come time for surgery, they tell me they will drain my pleural cavity of excess fluid while I'm out. They got in there, didn't drain anything.. Then they took the silicone tubing that was my shunt out of the space next to my lung, freeing it from scar tissue, and then placed that same tubing through my internal jugular vein and into my heart.

I was right about the infection.

For the entire time I'd been trying to tell them so, there'd been an infection hanging out in one of those little pockets of scar tissue by my lung... Stick an infected piece of plastic into the heart and what do you get? MORE infection!
Pleural cavity infection + removal of shunt to R atrium of heart= septic patient. (sepsis meaning an infection in the blood- something system-wide)

So that meant another surgery, with about a zillion incisions, to remove every piece of hardware from my body.. And loads of antibiotics and chest tubes and then a lung surgery, then more chest tubes and antibiotics.. Declared free from infection- Put a shunt back in, the exact same strain of bacteria pops up almost immediately.. More surgery to take stuff out..

7 surgeries in 8 weeks.

That was the bad part for me.. The bad part for everyone else was what came later, that defied logic and explanation.. It was bad for me, too, but not in the same way. I wasn't always there for it.. But the coma and the events surrounding it are another story, for another entry..
The words "nearly dead" were very accurately used to describe me.. For the medical types out there.. I presented to the ER w/ a Glasgow score of 4.

But that comes when next I write.