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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Tuesday, January 3, 2012

(light at the end of the) tunnel vision

behind the wheel.

I 94 W. the greatest sense of control i have felt in years.

finally crowned miss independence. and although we are a family of three, traversing the montana trails, for a couple of hours i was team leader. negotiating the twilight lights, picking the pit stops and gps-ing one miss maggie may into the "pet wing" of the comfort inn, billings, montana.

then my calves began to expand, throb and surge upwards throughout my thighs; like excessive ribbon tightened around and around by an overenthusiastic, professional, christmas gift wrapper. or perhaps, more accurately, a rodeo rancher hogtie-ing, stringing me up, paralysed, demoralised.

and poof, those lovely, lavender puffs lowering into the western sky deepened, darkened down into the horizon, and any sense of empowerment vanished total.

immunosuppressives had shackled me once again.

with kevin's 31'' jeans burgeoning wide, i placed my quarter and a desperate plea over to cedars.

and i did not get what i wanted.

second transplants are very high risk. i am extremely fortunate that the graft (transplanted kidney) is performing this well. but, because i rejected on cyclosporine two months in, they are reticent to lower my medications until the one year mark. at that time, there is more medical evidence that the graft will have a long life, and they will be more comfortable lowering my cyclosporine.

i have tried to tell them that i have always been an abnormal patient by cyclosporine standards. my level was always around 70, and i had my first transplant for 23 years. but they would prefer the level to be 200, hence the double dose i currently take. but, when i rejected, i was drinking and abusing drugs, which, of course, directly interfered with the absorption of my cyclosporine.

but my transplant co-coordinator made a good point. she reminded me, kindly, how everyone is very aware of how brutal my current side effects are. she also reminded me how accomplished and focused i have been with my recovery, and how challenging all of this must make my life. and finally, she reminded me, that if you lower your meds on your own, you run the very, very, real risk of a rejection episode.

in fact, not just a rejection episode...
but the painful IV steroids you must suffer along with...and biopsies...without drugs...
and ultimately, the terrifying reality that you may lose your kidney...without drugs...

yup. somewhere along the north dakota/montana border, i was scared shit less.

but her final words flipped on a reminder switch for a barely flickering light. if i squint, i can see it. but it never stays on long enough to be certain.

"by one year, we would like to have you back down to 100 mg, if not 75 mg twice a day."

[sigh. there's a lot on my plate, and dammit if my mother didn't always tell me to at least try everything once.]

april 8th. one year.

it's almost all i can think about as i squirm, flop, gasp for air, upon the deck;
too slippery when wet.
hooked in the mouth, yanked away from salt water sin.
sliced down the belly, my guts are ripped clean;
yet i am still a medical machine.
when will i swim upstream?
how do you live each day, when you are living for a date?


  1. If you can't wait, look forward.
    It will get here.
    And between now and then, even if you get pissed or have a horrible day, you will feel loved, experience beauty, see sunsets, snuggle with Maggie, breathe, accomplish, overcome, empower yourself, thrive, recover...

  2. Between you (Hen) and Suzanne I cannot read your blog + comments , and all the amazing words, without getting blurry eyed from tears. Then usually a sigh of recognition surfaces and I can let go of an ounce of something. There's something tremendous about looking at life and how tough and gorgeous it can be simultaneously. I guess to experience all the amazement in the world, we also have to experience the innate struggle. With the horrible, comes beauty on the other side....when sacrifices are made, love and compassion abound.

  3. And I miss you and your extra 20 lbs. terribly. In fact, it's more of you to miss, so it's been extra hard. Can't wait to see you. xo