Thursday, July 29, 2010

The Chair worth fighting for

During that week in the hospital, I had the standard motorized bed, a recliner, and a regular chair. I figured out pretty quickly that I wasn't going to be able to sleep in that bed. It was comfortable enough, I guess, but I couldn't breathe through my nose; it felt stuffy. I'd nod off, then startle awake, feeling like I was suffocating. On top of that, the bed was automated: every time I shifted, trying to get comfortable, the damn bed would start grinding and inflating and deflating the mattress, trying to help. I never did figure out how to stop it.

So I slept in the recliner. I still wasn't getting a lot of quality sleep. Every four hours someone would come in and take my blood pressure, temp, and oxygen readings. On a different 4-hour schedule, the nurse would come in to drug and medicate me. Around 4:30, someone else would grab a blood sample. At 6:30, one of the doctors would pop in, look things over, and move on (and I'd have to claw my way out of that chair to close the damn door). Seven a.m., breakfast. Seven-thirty, housekeeping. Over the rest of the day it was busier. No one really sleeps in a hospital, it seems.

Once I was cut loose, I spent the first week in my room trying to pile pillows on my bed so that I could sleep sitting up. I still couldn't breathe lying down. It didn't work the way I wanted, so I started looking for a recliner.

Montage: teaming up with a friend, me hobbling on a crutch as we went to thrift shops and Good Will, up and down the Flea Market stalls...checking used furniture stores...the cheapest one we found was $150. Nope. I ended up utterly wrecked; my freaking leg wouldn't let me go more than a few hundred feet at a time before giving out.

Craig's List, put in a few details to limit the search, and *VOOM!* There's my chair. $35.00, just what I was willing to spend. Picking it up and getting it home was the easy bit...but I had to bulldoze my room to make space for the thing, and I damn near killed myself getting it into the house (no one around to help). What took the seller a minute of carrying the thing out to the car took me nearly 2 hours from car to room, with frequent stops for 20-minute rests. I was wrecked all over again, stubborn idiot that I am. This is the "worth fighting for" part.

It's not perfect, but I've gotten something closer to "through-the-night" sleep in the last two nights than in the last two weeks.

Monday, July 26, 2010

A Week With Jeesus!

My leg went away July 12th.

It started with an intense fiery pain across my shoulder blades shortly after I got out of bed. This was followed by me nearly going unconscious during my usual morning cough. Nothing else happened until I got outside.

As I was hopping in the car to go to work that morning, my entire leg simply went numb; it felt like the femoral artery went empty, clamped off without warning. Didn't last long, a few moments, about as long as it took for me to jump back out of the car. I put a foam cushion on my seat and got back in; it helped a lot, and by the time I got to work it was almost back to normal. Still twingy, uncomfortable. It's 8 a.m.

I made it across the parking lot, but by the time I found a computer terminal to clock in, I had to lean hard on the counter. My leg felt like I'd been running without rest for hours. In another few minutes it was numb again.

Montage: Call a friend, get a ride to a local clinic, sit and wait. It's 9:15 a.m. now.

Within 15 minutes, there was a solid, grinding bar of pain spreading from the middle of my back just above the kidneys and wrapping around to the front. It felt like everything in my abdomen was cramped up all at once, guts, kidneys and all.

It took more than an hour before I was called to an exam room. By then I was panting, unable to take a large breath.

Montage: Doc asks a few questions, calls in his boss, and they both tell me to go to the ER. Call friend back, get ride, hit ER. Sign in, sit and wait. It's 11:15 a.m.

Brief bits of activity: they call me to an exam room and take BP, temp, blood ox, send me back. I sit and pant. My sister calls for the third time, asking questions I can't answer because I can barely breathe, but this never occurs to her. I turn my phone off and wait and pant. They call me to another room, put me on a quickie heart monitor, draw some blood, and get a chest X-ray...then wheel me back out to the waiting room. It's almost 1 p.m.

Some guy is ranting about the hospital not helping the invalid woman sitting with him. I try to remember what breathing feels like.

They come get me and install me in an exam room, give me one of those backless gowns, and eventually start hooking me up to stuff--an automatic BP reader, heart monitor, pulse ox reader, a saline drip, and another IV thing that doses me from time to time and bitches at me if I bend my arm. Then they shoot me off for two CAT scans. Now it's almost 3 p.m.

And now we have a cause. The scans revealed a tear inside my aorta from diaphragm level down to the femoral arteries' branch. Over time, high blood pressure opens a tear in the inner lining of the aorta, gradually making it bigger, and then tears the lining away. My leg went numb because the tear ballooned out at the lower end and blocked that branch. All that pain was sympathetic: your innards don't have their own pain receptors, so my brain was interpreting the damage to my aorta as gas pain at the upper end, kidney pain a little lower.

The good news is that I don't need surgery. Just keep the BP low and controlled and the tear will heal itself.

So now it's 4-something and they won't let me move. I have to lie on my back, keep my arms still so the BP cuff and IV won't be obstructed, and I still can't breathe. The exam room is stifling and I lie there sweating, eyes wandering from place to place. There's a crucifix on one wall near the door. I couldn't think of anything snarky or ironic, let alone be amused at the depiction of a long, torturous death in a room full of healing technology.

Somewhere down the hall was a steady, low groan from what sounded like an older man in pain. All I could think was, "I'm with you, man."

Five hours later (nine-something), they sent me to the ICU, where the air conditioning was on and I finally met some friends named Lortab and Dilaudid who made the pain go far, far away. The Dilaudid kept me amused by making the room roll and spin slowly for a bit. A crucifix hung next to the door, but now I was too loopy to be amused by the torture/healing thing. They brought me the finest nectars--simple apple juice and a cup of ice cream, but it had been 24 hours since I'd had anything to eat.

Other than the new comfortable digs, it was all the same--heart monitor, BP, pulse ox, IV's, don't bend your arms. They kept me there from late Tuesday to Thursday morning, then put me in a regular room until I left on Tuesday the 20th. Yes, there was a crucifix. I was off the IV and BP machine (but someone came around every 4 hours to check), and they started in on the pills, looking for the right mixture of them to bring my pressure down and keep it steady.

The best thing was the very comfortable recliner, the only place I could get any real sleep. I kept the phone unplugged: it only rang when I was trying to sleep.

It's been almost a week since they let me out. At least one of the meds has me so dried out that my nose feels swollen shut, so I can't sleep deeply--I keep gasping awake and feeling like I'm suffocating. The only way I can sleep is sitting up, but I'm still stuck with cat-naps. My appetite is returning a bit at a time. My right leg still won't take much walking. Just going to a convenience store leaves me in pain and huffing like I've run a marathon. I feel worn-out, exhausted, lethargic.

This ain't any fun. Well, the vivid waking dreams (a side effect of one of the meds, or maybe sleep deprivation) are fascinating and sometimes interactive. I wish I could remember them all; some of them have been utterly cool, looking like animated Frank Miller artwork. There have been a few where I was trying to pick something up, only to wake up and find my hands still reaching for the item. I've had brilliant fireworks displays, glowing samurai doing battle, and a skeletal pirate ship.

It seems like there should be an ending here, but I can't really thing of anything.

Saturday, July 24, 2010

The Three-Thousand Dollar Grapefruit (part 3)

This is the part I've been most hesitant to write about: the actual procedure.

On June 14th, I just did what these guys did. I'm still amazed when I read that page, especially by the guy called Roger, who recommends using a vacuum pump.

That still kinda freaks me out. It'll definitely draw the fluid out more quickly than the "gravity drip" approach the other posters (and I) used. I just don't like it. Don't try it at home, kids (obligatory disclaimer).

Overall, it took about 2 hours. I sterilized everything, wore gloves, and barely noticed the needle (the cold pack was a lot colder this time). Taped it in place and waited.

Two hours, drip drip drip.

Two. Freaking. Liters.

Credit to the ultrasound tech (in Part 2)! Her estimate was on the nose.

I'd read enough to expect the reddish-amber serous fluid that a hydrocele fills up with. I wasn't expecting two liters of it. You go down the soft drinks aisle of any store and you're presented with bottles 4 inches in diameter and a foot long! It just doesn't seem possible.

It's not a permanent fix, though. A month later, I drew another pint.

No one seems to know what causes them. But I've got a theory, based on the last couple of months' medical crap I've gone through. Remember that the price tag on all of this came from getting shuffled to the Emergency Room for high blood pressure (280/150).

For the past ten years, I've been aware of my BP running high, typically in the 180/110 range. I've had some occasional swelling of both legs below the knees, had both knees messed up by fluid accumulating in them, and more recently my right elbow "went out" the same way for several days. It makes sense that excess fluid's got to go somewhere (assuming the excess blood pressure interferes with the kidneys' filtering function), so maybe that's what gave me the hydrocele.

My theory was given a boost when I went to the ER again on July 12. They set me up with IV fluids...and damned if I didn't end up with something bigger than a baseball. It grew pretty steadily on its own until it reached its "normal" humiliating size.

Maybe I'll set up an experiment--empty it out for the third time and see how my medication-enforced lower blood pressure affects things.

[Update (Aug. 25, 2012): the lower blood pressure didn't seem to slow things down. I only bothered draining the thing 4 times in total--once each in June, July, and September 2010 and in January 2011. Each time, it came back. Now I'm just waiting for the Medicaid doctor to get his stuff together so I can get a urology appointment to get this damn thing dealt with once and for all.]

Friday, July 9, 2010

The Three-Thousand Dollar Grapefruit (part 2)

Yup, I chickened out (read Part 1), unable to move that needle, unable to rid myself of the most humiliating thing my body could have done.

Nothing for it but to call a urologist, set up an appointment. The visit alone would cost $150.00. I was willing to pay it at that point--I just wanted the damn hydrocele GONE. I set up a May 20th appointment.

Montage: Wake up on the 20th, shower, breakfast, drive to the urology center, sign in, fill out 15 pages of name, address, phone numbers, medical history, allergies, sit and wait, my name is called, I give a urine sample and sit in the exam room.

Nurse comes in to check my blood pressure. Hand-held electronic all-in-one tester, pretty cool, but holy crap is the cuff supposed to be so tight that my hand goes numb?

Nurse looks confused. Tries it again. My fingers tingle and she looks confused again, goes to get a different machine. It does the same thing, my fingers tingle, she looks confused, and now she's gone looking for a regular cuff & bulb. I already know I've got high blood pressure, but she can't look confused now that three different tests show something like 290/150.

Holy crap.

The doctor comes in shortly, has me drop my pants, looks the grapefruit over, tells me there's about a liter of fluid there, asks why I waited so long, and tells me to get my ass to the ER to have the BP looked at. He calls for an ultrasound of the grapefruit while I'm there. I'm out the door.

Cost so far: $150.00.

Montage: Drive to ER, park, walk a lap around the Emergency department until I find the admissions desk...another blood pressure test, a thermometer...ushered to a small exam room, drop the pants, show off the grapefruit, why'd you let it get like that, no money, no insurance, left it alone because it wasn't a problem until now, follow me...another exam room...put on this backless robe and hop on the's quiet, so I whip out the current "Dresden Files" and arrives, encumbering me with company...nurses arrive in a swarm, poking, prodding, and now I'm wired to an EKG machine, bleeding into sample vials, and talking to another doctor, answering all the standard questions with standard answers.

I'm wheeled to the Radiology department and the first woman to touch my junk since 1996 works her ultrasound machine, confirming that I've got a hydrocele, there's no cancer, and there's no communication between the hydrocele and my abdomen: no hernia. She found both testes, showed me that there was good blood flow in both, though the right one was being crowded by that freaking fluid reservoir dangling there. She even used the machine to estimate that I was toting about 2 liters of fluid therein.

TWO freaking liters?

Back to my exam room. I'm told that I need to produce another urine sample...or they're going to put in a catheter. I order everyone out and do it.

Montage: Doc shows up, writes a scrip for BP meds...a social worker for the billing department comes in, talks about the paperwork she's about to give me...the nurses return and unplug me from the EKG, pull the IV out of the back of my hand...clothes back on, gather my stuff, out the door.

The prescription was 4 bucks. I wish that were the most expensive item.

I got the bills a few days later:

Doctor: $314.00
Ultrasound tech: $133.00

ER visit "high severity"...936.00
UA automated w/micro...$72.00
Metabolic Panel total CA...$38.00
CBC w platelet auto diff...$85.00
Vascular study limited...$649.00
US exam scrotum...$461.00


Twenty. Three Hundred. Bucks. Add in the doctor's and tech's fees, and it's $2740.00.

Heh. Where is the money going to come from? No insurance, no health plan, and I make at best $15k per year. I put in for the charity/financial help plan from the social worker, but I've yet to hear anything out of them, even after a few calls. I've already paid the two least expensive fees--the doc and tech.

I did a follow-up to the urologist a few weeks later. Another $150.00, so now we're looking at $3,000 in total costs from the medical folks...with nothing to show for it. The urologist wanted to do surgery, was all set to make the appointment, but I reminded him that there's no money there. He set me up with a finance counselor; she gave me a photocopy of a brochure, I did the Google hunt, and I quickly found that I don't qualify for Medicaid or Medicare. I went looking for medical insurance plans.


The plan I could afford had a $10,000 deductible. The one I wanted had a $500 deductible, but would eat one paycheck a month.

Okay, screw that.

I dug around, looked at Blue Cross/Blue Shield, didn't even bother to fill out the qualifying survey. By that point, I just didn't care anymore. Tired of the crap. Time to go back to the do-it-myself approach!

Saturday, July 3, 2010

The Three-Thousand Dollar Grapefruit (part 1)

Imagine, if you will, carrying a good-sized grapefruit around all day, all night. It's there when you sleep, when you wake, when you use the restroom.

Did I mention that it's in your scrotum? Think that through. Imagine for most of a year having no idea what the hell this thing is or what caused it, but pretty much overnight your pants don't fit.

Add to this a lack of medical insurance and no money at hand to pay for an ER trip.

That was me in July of 2009. I did a bit of Google searching, sorting the crappy fake-med "information" out from the real thing, and quickly eliminated cancer as a possible cause. It wasn't a hernia. It took several tries to get the right combination of words in a search, but once I figured out that it was fluid that had collected in there, the answer popped up quickly in a search: hydrocele testis. Yeah, I know I should have gone to a doctor, and like that, but that lack of money was a bigger worry than a painless thingie. I don't have any credit cards. Never have. I live entirely within my means, or I do without.

I took to wearing long shirts. Once it got cold enough, I wore a jacket. I tended to avoid public places when I could. All the while, I was wondering how I was going to get rid of the damn thing.

Sometime in April 2010, while hunting for urologists and trying to find out how much surgery was going to cost, I found sites like this one, where several guys described a do-it-yourself approach using a #20 gauge needle and some surgical tubing. Simple!

But I freaking hate needles.

Surgery's a 30-minute outpatient thing, 2 weeks of recovery...easily a couple thousand bucks for hospital time, doctor fee, anesthesiologist, and whatever else. Did I mention the money thing?

The do-it-yourself approach...under twenty bucks.

I read that forum a few times, and it seemed really straightforward, except for the damn needle. Seems crazy, sitting here re-reading the forum and my own post, here--my little 'inner dialogue' voice shouts, "Are you INSANE?! Go to a freaking hospital! Find a doctor! You're asking for an infection!"

Screw it, I thought. I'll do it myself.

Montage: It's May 15th. Hopping into car, driving, shopping, finding the supplies, drive home.

The next morning (May 16th), I had everything set: needle, tubing, 2-quart bottle, a cold-pack (anesthetic--you put an ice cube or whatever on the spot to be poked, get it numb, and you're done), rubbing alcohol.

I could describe the process in a montage...but there's no need.

Goddamn needles.

A #20 gauge, half-inch needle doesn't look like much until you're sitting there about to jab it into your body.

Goddamn needles.

I sat there, shining steel a millimeter away from The Grapefruit. I sat there long enough that the cold pack was a lukewarm pack and I could feel the goddamn needle.

I chickened out.