About Me

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Los Angeles, California
I am 47 and thriving in Southern California. One day at a time.
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Sunday, March 6, 2011

medical mystery tour

they call me the 3% girl.

whoever "they" is, is an utter mystery. it's a ridiculous euphemism used when people want to assume an authoritativeness; when it actually has the opposite effect. the pronouns' use only underscores how uninformed you are. "they say"...that's your source?


so i stand corrected. i have always called myself the 3% girl. any potential for medical mishap would typically ensue on my watch.

i've always hated medical television dramas. i've never bathed in the approving gaze of a brooding clooney-esque physician undressing me with his eyes. or witnessed the homoerotic tension between a mcdreamy vs. mcsteamy. or even the cane twirling, vicodin popping antics of a dr. house.

[i've never had a quickie on a gurney]

my stories are more science fiction than sexy sponge bath...

when i was 14, i had my first kidney biopsy. it was a doozy that left me bleeding for a week, and on bed rest for 10 days. being a "regular" kind of gal, like clockwork, i'd leave behind a substantial gift for the afternoon shift nurse. same time. same place. she was not amused...

oh, c'mon, when is poop not funny?

4 years later, i had another kidney biopsy scheduled. one for the books, they took out liver tissue instead of kidney tissue. they had been overworked and overtired; and i was just over it. they wanted a "redo", but at 18, it was one of the first adult decisions i made. i basically told them to "fuck off", 'cause you aren't going back in there. we knew by christmas, my kidneys would be shot...

the upside was, apparently, my liver looked fantastic.

in those early years, we tried all types of drugs to try to slow down my kidneys' deterioration. one of the blood pressure medications prescribed was an experimental one, and in 3% of cases, you would lose your sense of taste. (are you a mile away?) and before i knew it, the only foods i could recognize were hard boiled eggs and mounds of french fries smothered in gravy. and pepper. lots and lots of pepper...

thank god for that 18 year old metabolism...

2 months before my first transplant, we started talking "d". at less than 8% kidney function, my time had come. a temporary catheter was to be inserted into my upper right chest area, directly under my jugular. at first, it wasn't altogether bad. my boyfriend's mother tightly held fist throughout the valium and demerol infusion; and soon enough i was dreamily inquiring about the secret life of my very own "adrian mole". the function of the subclavian catheter is to hook up to the serpentine tubing of a dialysis machine. but, on the inside of your chest, it is meant to hang downwards into the cavity. the follow up x-ray revealed a perky, plastic erection inside my chest walls....

happens in 3% of cases...

ohhh, no.

so as the drugs wore off, they wheeled me back into the o.r. and yanked and pulled that plastic prick back into flaccidity.


success. i was ready for the big "d".

being a woman-child, i have always looked exceedingly young for my age. and at 18, that was no exception. so imagine the annoyance of an older and wiser dialysis technician barely tolerating my weak rebuttals. "but, i am not retaining any excess fluid!". (the 3% girl, remember?). nope. she programmed the machine to remove 1.5 kg of fluid. edema is extremely common with renal failure, and i am currently on 80 mg daily of lasix to combat my current struggle. but back in 1987, i had not a swollen ankle in sight.


a deliciously, endless night of vomitus and dramatic, dry heave into an old paint bucket at home. my poor mother. she must have been ready to kick some ass. i know i was.

[you can't keep a viking down]

i could go on...

-hot tea spilled on me on christmas eve while hooked up to dialysis...

[although, i discovered how fab aloe vera is!]

-my catheter becoming infected. as a side note, sucking and pulling on an infected vein is right up there with sitting through a tom arnold sitcom...

[it did, however, cut my pre-surgery, final dialysis treatment short!]

-buckets of immunosuppressives leaking into my right arm's tissue, which swelled up to the size of denzel's nether region (oh, but a girl can dream)...

[but, a longer hospitalization means more hospital food! yum!]

-a 10 year celebratory biopsy that started with a needle as long as a javelin spear, was interrupted by the adorable fainting spell of my beloved, and ended with hospitalization and clots the size of plums, and just as juicy...

[hey, you're just reading it; i had to live it]

now before you yanks start wagging your proverbial, judgmental digits, with a knowing tilt of your head and cluck of your tongue; there have been plenty of "made in america" medical minefields i've dodged that could rival our death panels any day of the week.

and by death panels, i mean you guys are idiots for believing that.

[btw, i can call you yanks, because i'm a yank, too, so "nah!"]

i love america, but this is a country, that abandoned me flat when i could no longer work. step one: cut off existing insurance. step two: increase premiums by 700%. step 3: wade through a labyrinth of bureaucracy and bullshit; fighting for 13 months before approved for disability. step 4: attempt to deal with the stress of no work, no health and no money completely on your own...

[and for the record, white bread and tomato sandwiches don't help]

when dr. dauer came into the room on tuesday, he immediately started yapping about a car accident he had been in. we have that kind of relationship. he was fine, but there was several thousand dollars worth of damage to his vehicle. a funny pall hovered over the room. all my concentration was infused into an attempt to sit up straight, while kevin stared blankly. (insert awkward pause). i have always believed pain is relative, and it wasn't that i didn't care, i just can't care anymore. every public gesture is an instinctual reflex. i am disconnected from it all.

i can't read. can't eat. can't sleep. and i certainly can't care about your BMW bumper.

1987. cement walls and downward spiraling ramps led into a purgatory of illness. passing oncology, i wound deeper and deeper into the hospital's bowels. dialysis. science fiction, indeed. deadened eyes in sunken frames. winding blood red cylinders, sprawling untamed throughout a maze of machinery. whirring that rivaled the annoyance of a leaf blower on the gentlest sunday morning. and the mood. as lighthearted as prince hamlet on his worst day.

[something is rotten in the state of denmark]

2011. back so soon.

my hemoglobin was 8.0 (low end normal 10.5)
my creatinine was 4.3 (0.4-1.2)
my BUN was 62 (8-25)

[hi. i'm half dead]

even dr. dauer called it the "d" word.

i don't want dialysis.

i want a preemptive transplant. i want shock and awe.

"if the nausea becomes intolerable, we may have to talk "d". but, i don't want you to have a fistula, because then you will have a permanent scar".

[a scar. he's worried i'll have one more scar. how lucky am i?]

aesthetics are not my priority. unlike the obvious secret of the botoxed, i wear my scars with pride...

"so hang on until next week, and we'll take it from there."

but what's intolerable? yesterday was insane. when i sat up, i wanted to lie down. when i lay down, i wanted to cry. when i cried, i wanted to walk. and when i walked i wanted to sit. endlessly enduring a twisted game of "simon says"...

so now we move on to weekly visits. i don't urinate properly anymore. "fits and starts" is not just the name of a short my besties made. i threw up last week, i'm nauseous all the time, and the best thing i can say about that is a corona helps. there's a well peeled eye on all things phosphorous, potassium, sodium, magnesium etc...one spike and it's game over and i'll be winding down those all too familiar cement spiral pathways into purgatory once again...

"the magical mystery tour is coming to take you away
coming to take you away
the magical mystery tour is dying to take you away
dying to take you away, take you away"

yeah, so the beatles were great. but, don't forget, i'm the 3% girl.

so no-one's coming to take me away...

my kidney may be broken, and my heart may be shattered, but i can still carve out a mean list.

-i have a room with a view.

-a dog who loves me.

-friends who reach out with love.

-and a husband that makes me laugh.

3% is better than zero. and i'll take it.

p.s. still no surgery date...


  1. You're one hell of a big hearted, talented, creative force. If sending big, fat, overwhelmingly positive energy helps even one iota, you have all that I can visualize pounding it's way across the miles that separate me from you. xx Mani

  2. Outstanding!!!!! You are loved by all!

  3. Beautiful Henriette.
    you have lifted my spirits so much in the past.
    You have made me laugh until my stomach hurt.
    You have opened your home and your heart to me throughout the years and I have so much love for you.
    I am so close these days and would LOVE to lend my support and my love and maybe, just maybe, put a smile on your face and a laugh in your belly.
    Your friend from WAY back.
    Rachel xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo