bilat pheos--bilat adrenalectomies???need advice/help

July 26, 2010

friday i met my endo md. every-1 here (houston,tx) all seem 2b perplexed &

unsure of just how 2 tx me...esp since i hav comlicating co-morbidities---new dx

of lupus, new dx of pheochromocytomas bilat in adrenals {r=3.2cm & l=2.9cm}, &

they hv made my cardio syst very VERY unstable. nothing is helping. @95lbs i'm

taking 400mg of lopressor daily & cardizem es 100mg--- & still in SVT (150 &

above); bp is still elev & consistantly @ 180s/100s---despite these mj doses on

my small frame. as a nurse i can not believe i have pulse/bp much less @ those

#s & SVT with salvo runs (v-tach). all docs admit they are unsure how 2 treat

each syst affected by the adrenals but all agree: " you r a very intrsting case " .

yeeeeha! so i guess u can read bout me in JAMA soon...some of them are pushing 4

the sx==actually all of'em are--familt too, i'm not so sure that iz de rite

thing 4 me @ this age & esp when i am not hemodynamically stable. i know i will

need it eventually, but now?? i am not nor hav i been afraid of sx-but a bilat

adrenalectomy scares the crap out of me! esp since the last time i was under

june 2nd 4 a d & c d/t a miscarriage my vitals were soooooooooo high (267/129

hr-186) it kicked off this terrible rollercoster ride. obgyn said that our baby

saved my life. it might not be worth it & he/she died 4 nothing if some md

doesnt find an intervention that works. all docs hav been clear--i might not b

here long. i was not looking fwd to turning 35 this aug 19th--now they r unsure

if i will even be here to see my 35th bd...pheos are rare but usually diagnosed

in autopsy b/c they r de cause of death. i am not coping well @ all--i just lack

the skills 2 deal w/all of this. i wld love 4 yall 2 educate me. does every-1

w/elev metaepi & adrenal tumors have to have sx?? is there a way 2 medically

manage them? how many hormone replacement meds will i hav 2 b on? none of my

docs can ans these to my satisfaction. i hav also noted them saying, the had not

'successfully' tx a person w/bilat pheos...let alone me w/the xtra crap. thx 4

listening 2 me...so glad ur here!!! thx kris mondry rn.bsn

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