Thursday, July 23, 2009

I am still alive. ***Warning! Medical Alert!*** Some of this post may gross you out if you're sensitive. Careful!

I am still alive.

And I intend to stay that way.

I'm also vitally ill. Very weak. Except for two days, I've been in the hospital since Walter''s post. Turned out I didn't need a pitt stop. Or even a tune-up. Nope. Did need a complete overhaul from head to toe, though.

I was admitted exactly a month ago with pneumonia and fluid in the right lung, coughing small bits of blood again; a minor fungal infection and thrush in the throat; and a heart rate around 150. The pneumonia later turned out to be from my colonized CA MRSA, which - yes - is a very serious thing indeed.

It moved to the other lung: double MRSA pneumonia. The docs drew 500 CC's of fluid out of my right lung cavity.

Oh my! Have you ever heard of The Worst Procedures You Never Want to Have Done To You? like a bone marrow biopsy, or a chest tube, like you see on Trauma Center?

Draining the fluid in my lungs, a simple procedure that usually takes less than five minutes, took 20. The doc and 2 nurses were great. It wasn't their fault. It's just that despite the cutest little ultrasound machine you ever saw, they couldn't find the path into the pocket of fluid that would let it drain. So the long huge needle poked into my back was gently but purposefully moved about, searching, searching, while this here so-called Experienced Pain Patient lost all dignity, squeezing a nurse's two fingers with all my strength and still sometimes having to scream out loud...

They finally pierced the pocket of fluid. The excellent doc had said it might be jello and hard to tap; or liquid, easy. The bottle waiting under my back to receive the fluid was 1500 CC's. I filled it just over half way; they called it 500 CC's. Mom and Walter say that's about a pint, one and a third cans of Coke.

I didn't have my camera. Frustration! But I held this bottle, a heavy utilitarian laboratory thing, in my hand. The fluid was warm and a little foamy. Odd to think it had just come from my body...The doc had a place on a report form where he was supposed to name the color of the fluid. One of the nurses rolled her eyes at me and grinned, whispered --This is his way of having fun at work.-- He thought and thought and then his face cleared and he said: --Apple cider! That's exactly the color of apple cider-- and looked quite satisfied with his report.

That was a little partial vignette from my month of life in this hospital. I'll have to see how much more I can tell, because I'm very weak. Probably a long overview will have to do for now: bear with me.

I've been admitted to Broward General three times, sent home once and nearly died, sent to an SNF (nursing home) without IV antibiotics and again almost died. There have been other close calls. But I am determined to stay alive, and if all powers that be agree, so I will.

The timing of various infections and other incidents is a bit cluttered in my mind. Sorry. Sometimes I swim in and out of consciousness. Walter says I spent about ten days either intermittently babbling, or perfectly coherent until I digressed onto something else coherent but senseless, like what my dead pet cats are fond of eating these days.

Double MRSA pneumonia. Fluid in the right plural cavity. Tachycardia. The first admitting doc was some idiot I didn't know. My ID doc and my primary were both on vacation. Under protest from me and Walter, I was released and sent home. We both felt I wasn't well enough, but the fever and tachycardia were under control, my lungs were getting better; they basically had no reason to keep me that the insurance company would pay for.

Have any of us not realized that insurance companies have seized almost total control of the most important decisions of our lives?

We were ordered home, so home we went. Encamped in the hospital bed where I'd lived for the past few months, I slept. When morning came, Walter woke up from the noise my lungs made as they rattled when I tried to breathe. Sick, sick bad.

Okay. Back to the hospital. But this time, strategize.

Water called my primary - the young and exceedingly competent Dr. D. - and my pulmonary (lung) doctor, the great Dr. S. We 'd have much more trust, much better understanding and communication, if my own docs who knew me were on the case. My primary was just back from vacation and booked to the hilt for appointments - could we see if Dr. S could squeeze me in?

Yes. But not till 3:00.

Both docs were near or on the premises of Broward General, where I'd been and needed to return.

Only a primary could be an admitting doc. Dr. S is a specialist. But they know each other and know my history.

I waited through that day of terrible sickness, trying to balance competing needs, trying to hide from Walter how my life-force was draining away. Oh, sick, sick. Scared and sad about maybe seeing the end? Despairing? Sure. All that. I didn't feel ready, didn't feel it was time. Not time. That's sad, to die before your time is due.

Time finally came to go to the doctor. During the last ten minutes or so of the drive, my face changed and Walter fully realized that I knew too, no hiding it any more...Later he told me my face went dead white, and my chipmunk cheeks looked gray and sunken somehow; and he hid from me what he saw and understood.

How silly we can be sometimes. Here we were, both knowing the real danger of death was close by. We weren't hiding that. We were hiding from each other that we knew it.

The doctor visit was funny and poignant and scary. I'll try to tell you why later. Dr S had a resident with him who I'd met before, and liked and respected. He walked us - Walter pushing me in a companion chair - through the ER, past Triage, past Admitting; past sick people waiting for help stacked in gurneys and wheelchairs along the hallway on what may have been the busiest day in that hospital's ER in its history.

Was it wrong? No. Triage had already been performed. Inability to breathe takes precedence over a broken arm. It's why I instantly, gladly, yield my place when the shoe's on the other foot.

Now? Such a lot of work; it's just exhausting. All my days are filled with xrays and ultrasounds; breathing treatments; blood glucose tests and three types of insulin shots; blood draws, from this most difficult *stick.*

Such new developments, such new discoveries of pre-existing *Issues!* Fluid was rebuilding in both lungs, no, eeewwwww!!! A huge and serious MRSA infection ate my entire right arm. Then another one encased my left leg and side from the foot to the middle of the abdomen. A lung doc found I had pulmonary hypertension. ME? High blood pressure in my lungs when my body's blood pressure was so nicely low?!! grump! A *double* cardiac catheterization, to check out the pressures between the heart and lungs, was scheduled.

Then...a positive blood culture came back from the lab. CA MRSA, and another antibiotic-resistant bacteria, had both infected my bloodstream. Usually that signals the beginning of septicemia. Blood poisoning. Death.

Whereupon they finally gave me one of those super-secret super-powerful antibiotics they hold in reserve for people like me - and all the infections began to turn around.

Yesterday I finally had the cardiac catheter. Hmmm...just realized I've no idea what they discovered about the pulmonary hypertension. Because one of the cardiac docs came to my room, once I was conscious, to say that he'd have done a triple bypass on me right then and there, except I would not have survived it. I wouldn't if he did it later either. He would not crack my chest like Walter's, not now, not ever, although I really needed it, because I would not survive the surgery. Did I understand?

Uh, okay. So where does that leave us? Stents and such? Yes, he thought they might keep me going for a while longer anyway.

My mother's here now, and Walter, and we've all learned that to talk to any of the huge multitude of docs now enveloping me, we must sit patiently in this hospital room and they will come to us. Sometimes we have no idea who they are. Even after they leave.

Today, Thursday, a much less upset cardiologist came by. We all immediately respected, liked, and trusted him. He firmly believes he can go right back in through the femoral artery, just like yesterday's cardiac cath, and find and use the right type of stent or angioplasty to get me better, not just as a stop-gap, but to hold open the three badly blocked vessels for years to come.

Yes. From all of us.

They scheduled the surgery immediately - for today - but just as my preliminary preps were done, they found my potassium was low. So tomorrow's the big day. And this time we'll try hard to post the results right away.

Ach. For such a long post, such a small sample of this odd month's life. So much else has been happening. Please understand how sorry I am for not posting better updates. I know you already forgive me, but I also feel your concern and worry. Perhaps I'll never stop being surprised at how strongly I feel it, and how much it means to me. How strong it keeps me, to know that you care.

Know this: I made it through some terrible situations this month. Your hopes and best wishes and prayers, and my family's, and my other friends', all gave me more strength to endure than I would have, could have, summoned up on my own.

I am still alive.

And I intend to stay that way.