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.
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.
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...]
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...]
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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