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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, July 19, 2011

thrive

there used to be a time in my life, when comments like," you are a such good friend; a great listener"; "you look lovely today"; "your home is beautifully decorated'"; "what a wonderful performance you gave"; "the animals thank you for volunteering"...would overflow my barren chalice of a heart with irreplaceable affection...compliments balancing an otherwise average day and mercurial rhythmic pace...

getting carded was always a vanity trip, to be certain, but in a town obsessed with youth, where i never quite "succeeded" the way i had hoped, a secret, swaggering smirk would always flicker across my lips whenever those 4 glorious words were inquired..."can i see some i.d.?"

[sorry, after renal failure, dialysis and a transplant that has already rejected once, i'll gratefully ride the vanity carpet for a moment or two...]

even the odd makeup job...when a young hottie would ooh and ahh over the magic i had performed to transform their skin into a glowing movie star palette...

yes, for a woman who lost all self-esteem several years ago, these are perhaps, trivial gifts to your mind, but after 3 years of watching your health submerge deeper and deeper beneath the horizon; i would clasp onto them the way one firmly, yet tentatively holds onto a newborn's finger...with loving delicacy and the desire to never let it go...

disability became my income. volunteer work disallowed. and the energy required to maintain the friendships i cherish became deconstructed versions of the best of myself. texts, emails and the odd call never represented the friend i wanted to be; but it was all i could engineer while chronic illness legislated the structure of my fading life.

and so on april the 8th, i prayed and prayed (and prayed maybe just a little bit more), that all this might be over with the gift of a new kidney. my husband's kidney. the love of my life's kidney...

but it hasn't. it has become a shadow of the success of my transplant of 1988. it's potential has evaporated into a haze of alternating medications, renal biopsy, rejection and familiarity with cedars-sinai that rivals the back of my hand...

and so now different gems shimmer within my soul...

-a physician friend of kevin's emphatically declaring prograf is a horrible, horrible drug...

-my social worker at cedars, one ms. lucy kim, comforting this teary eyed patient, expressing how challenging second transplants can be...

-and my pain management physician reminding me that my incision could bring pain for at least 6 months, if not up to a year...but probably not my entire life...

not exactly shafts of sunlight illuminating the yellow brick road; but in this "new normal" where i writhe and thrash, these comments instill even the smallest suggestion of hope; linchpins i can affix to my heart to before it completely crumbles into fear...

but today, my attending physician suggested immunosuppressive #3 for this labored body to attempt to tackle.
it's official.

still plagued with migraines/headaches, tremors and absolutely no appetite; i now fall into the category of those who simply cannot tolerate prograf. last week i was in bed all week. this week, with the reduction from 3 mg to 1 mg, i saw slight improvement, but nothing vaguely smacking of a "decent quality of life".

so today, there is a new drug on the horizon: belatacept

this drug was approved by the FDA on just june 15th.  this is a new, bordering on experimental, medication...

and here's the poop, folks...

it's given intravenously once a month, in addition to iv antibody treatments. your risk of rejection increases, and there is a much higher risk of developing lymphoma (cancer); but for people who cannot tolerate prograf, it is the single, best option.

out of 700 patients, 15 developed lymphoma. one of their patients even went off belatacept after 5 years because of that very reason.

[can't shake the feeling there's a cage, wheel and alloted amount of food waiting for me in a cedars' labratory on this one...]

this was too much to process on the drive home from cedars today.
i was alone, dumbfounded and thank god for speaker phone, because the sound of my husband's voice was the only thing that kept me from careening off the side of the road...

throughout teary droplets of confusion, disappointment and perhaps a dash of self-indulgence fogging up my glasses, i negotiated my way throughout the roadways of my adopted hometown; frantically wiping away at the dribbling emotion veiling all vision.

i couldn't see a skinny l.a sister clutching her starbucks in hand...not a celebrity in sight...and the glorious summer foliage was a watery blur...

[c'mon hennybird. bring on a pit stop.]

so i pulled over to the nearest "coffee bean", simply because there was parking. ah, parking karma in l.a. is revered in a divine hemisphere...so i walked over to the entrance, me with my painful incision, tremors and migraines abounding, and held the door open for a new mother, clutching her newborn tightly between her paws...

not a nod, not a thank you, not a single acknowledgement of recognition...

rude would be an understatement.

but then i glanced up and saw this sign...[and loved it...]
and i realized, i am not angry. i don't hold blame. but i wish this upon no-one.

i am sad. i am scared. and i am tired.

the incredible joy that exhilarated us for 2 weeks after the transplant is gone. it was a time of complete gratitude, jubilation and ah, "joie de vivre"...

but now, i ponder, process and proceed forward into unknown territory once again...

3 variant immunosuppressives. 3 uncharted pathways. 3 daunting proposals i must survey, probe and attempt to decipher, so that this kidney won't ever want to leave me...

[there is no place for the word "easy" in this post]

because i want to live. not just survive. but thrive...

thrive.

[please...]

1 comment:

  1. Hen, I am glad you posted an update and am devastated that your last week was unsuccessful. I am sure I speak for many when I say wish there was something I could do. I have hope and faith in belatacept that only the best results can come...

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