i have been out of the hospital for a week ive been taking the meds they gave me but im still too sick to do anything with myself. i went into the hospital with no breathing problems just racing heart and fever over 104. CT scan was done and i was diagnosed with terminal LAM disease. once the lung biopsys came back LAM positive they discharged me (the dr seemed super excited to tell me how rare i am to have this horrible mutation he had never seen it in his 40+ yrs of being in diagnostics) problem with discharge is im still running 103.5-104.5 fevers all day and night if i miss my tylenol it spikes idk wtf is wrong but the hospital didnt fix what i went in for they found something worse and let me out. they said they are not equipped to treat my disease i have to go to the mayo clinic LAM specialist that my insurance wont cover for answers or st. joes hosp somewhere out in phx way too far from my family. if this is the LAM attacking i need to know. they diagnosed me with a disease so rare i can barely find any info about it. all i know is i went in breathing fine just had sinus tachycardia from the pain i was in and uber high BP and after 3 lung biopsys and lung cyst removals i feel like i have a boa constrictor around my ribs and i cant walk to the mail box and back without using my breathing machine.i just want this fever to go away so i can stop sweating and think straight and get the energy to clean my house so my poor over worked over stressed boyfriend can catch a break.
Posted on: Tue, 11 Nov 2014 14:42:22 +0000
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