Aprile Johnson Aprile Johnson Take Two

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Hey Guys ,

I figured this would be the best way to keep anyone who wanted to be updated about my new current health battles and upcoming second brain surgery informed . I got ALOT of flack years ago for posting some minor health issues on FB or even talking about being on chemo ?? I was told it makes people face their own mortality before they want to ? Whatever the hell that means ? Newsflash , none of us are getting out alive ! Some have been taken way too soon and others choose to live like their dying tomorrow . Not me , I chose to take the largest staircase that seems to just keep going on and on . I always joke and say the only organs I have left are the ones I need to live ? I’m sadly not even joking . I’ve had even had to have half my entire GI tract removed in 2012 when I was I was having my appendix removed for the second time 🤦🏼‍♀️This was the second time in less then 8 years I almost died from sepsis . It was because of my appendiceal stump being left behind and rupturing that caused me to be dx’d w Systemic Mastocytosis & POTS . My mastocytosis has sent me to the ER at least 35x in anaphylaxis for unknown reasons ? It seems like the last 28 years have been one hurdle after another for me ? I always compare each surgery or medical procedure I’ve had to the ones before ? I’ve had 27 major surgeries on 28 years . Somehow the worst thing of all has been a conscious bone marrow biopsy done in a Drs office in Boston w no sedation !! 😩😩NEVER AGAIN !! A close second is when I had pain mgmt injections in my SI joint in my lower spine , I almost threw up on the table because the pain was so intense . I all but jumped off and ran away , until my pain mgmt Dr.Noto finally listened to me and had them knock me out . Is it fair ?? No , of course not , but then again life isn’t always fair . In fact , more times then not Life is A Bitch !! Kinda like my one of my favorite songs “Im A Bitch “ by Alanis Morissette . My journey starts this week I guess ? Rick and I are going to meet w the Epileptologist I wanted as a first choice at Yale and had to fight to get him , after they tried telling me he wasn’t taking new patients 🙄 His name is Dr. Lawrence Hirsch , I’m also hoping to get in to see my hematologist this week since I was dx’d w antiphospholipid syndrome last week . Which I kinda figured out on my own and had to ask my Drs to test me for it 🤦🏼‍♀️I’m not going to lie , it gets exhausting having to teach Drs about my complex history , but since they kinda can’t help me without knowing the right direction to go , I need to take the wheel and help myself. I’d just like to explain a little why all this is happening . It’s not that my brain tumor is back , it’s NOT ! Thank God ! Many of you know that I’ve had a very difficult 15 months - probably the worst 15 months of my life if I’m being honest . Since I’m being open and honest I’m not ashamed to admit I have come very close to taking my own life at least 3X in the last 15 months . So knowing I couldn’t fix these feelings myself and I still have 3 other kids and a husband and parents who need me . I knew I needed to get help and get it fast . I almost voluntarily committed myself - so this way things could be done on my own terms . I know the system and no the game . So I started seeing a therapist , she’s great ! However , the only way for me to feel better mentally is by taking antidepressants & anti anxiety meds - unfortunately these types of meds are highly known for lowering seizure thresholds . . Well after about 3.5 months on a pretty high dose of Effexor & Xanax plus the 37 other pills I need to take daily to live and my monthly chemo infusions it seemed odd to me that I was becoming more and more aware that I was having tons of seizures in my sleep , I would wake up w blood all over my pillow from biting my tongue , I have physically assaulted Rick - he’s a Saint by the way . For 28 years he’s been told to not try and restrain me when I’m convulsing to just protect my head since I have a titanium plate and aneurysm clips and to make sure I don’t fall from bed or a chair ? So he has been punched , kicked , scratched -more like gauged in the face w my nails , I’ve broken blood vessels in his eyes . He has stayed awake watching me because I yell out and sound like I’m speaking in Devils tongues , he is always right next to me watching to make sure I don’t suffocate myself , or block my airway . Same with every surgery I’ve ever had -his face is always the last I’ve seen before I’m wheeled in and the first I see when I wake up . He is truly my rock . I’m sure there’s many men reading this asking themselves if they could handle these issues on a daily basis for almost 30 years ??!! It’s a long long time to watch someone you love suffer in so many different ways . I hate that he and the kids have to see me like this ? I have always said though , that I would do all of this over again if it meant my kids all got to be healthy and never had to worry about this stuff . This is not the life I signed up for , but since it was the hand I was dealt I need to play the hand , albeit over and over again . So back to seeing the “Good Dr.” we are going to meet w him in Stamford on Thursday . My guess is he may put me in the epilepsy center at Yale for monitoring , but I’m not sure since I already had both 24 hour & 48 hour EEG’s w my Neurologist . Both showed extensive hippocampal sclerosis which is a fancy medical term for ALOT of scar tissue . They both  showed i was having anywhere between 9-12 seizures a night in my sleep , it even picked up on my hyperventilation episodes at he beginning of my seizures and my devils tongue language which is a classic sign of what is called “ Mesial Temporal Lobe Epilepsy “ OR MTLE for short . The other caviat is my MTLE is severe on the right side which is same side my tumor was on , also with very seizure I have the sclerosis gets worse . So I was hoping I could just get a temporal lobectomy and a good neurosurgeon either from Yale or Hartford would go in just like they did the first time , by sawing open my skull on the right side above my ear , they remove that dura flap (piece of skull bone and place it inside my stomach so it keeps it’s autologous properties (my own cells & blood etc ) and doesn’t get dried out . My Neurologist told me that would absolutely NOT be recommended ? He said going into the right side of my brain and cutting away at scar tissue especially with all the hardware I have could be catastrophic . So he told me my only choices were the “VNS” Vagus Nerve Stimulator “ or the NeuroPace which is a device that place inside my brain and it will send electrical shocks to my brain as soon as a seizure starts and hopefully stops is . I already have Vaso Vagal Syncope where I pass out of my blood pressure gets too low , I make any sudden Orthostatic changes etc I pass out . So when I called to speak to Nurse Case Mgr she told me I wasn’t a good candidate for VNS . So NeuroPace it is ! I’m petrified of my two pre op tests which are in many ways like having brain surgery while awake . The first one is a Wada Test , they will insert a catheter up thru my groin all the way up to the right side of my brain and paralyze the entire right side of my brain by injecting sodium amobarbitol😳while the right side is paralyzed I will be monitored , watched and tested . They will ask me questions I need to answer correctly , show me pics etc . The next day they do the left side 😖Then I need to have an internal EEG a where essentially they open my skull  then insert  the electrodes  to each section of my brain while I’m tested some more . I’m praying they can fix my blood clotting disorder ASAP , the Usual course of treatment is 6-9 months of Coumadin or Heparin therapy . Which would mean I couldn’t have surgery for approx a year ! I can’t wait that long , My sclerosis is already spread pretty far , unfortunately ..:(  . So I’m hoping I can try Xarelto or Eliquis . IF I did those for 3 months then I would only have to wait another 9 months or so ? If you read this far . Bless you . Thanks for always supporting me , I’ll post again after I see the Dr on Thursday . I also have consults set up for Hartford Hospital & NYU. I’m going to not talk about my health stuff on FB anymore so you’ll have to sign in or sign up for “Caring Bridges Journal “ updates . 

Love , Aprile xoxo