need some advice/help

[Guest guest]

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

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

pheochromocytomas bilat in adrenals, & 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, 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 the d & c d/t the 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. 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/pheos...let alone me w/the xtra crap. thx 4

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