Aprile Johnson Aprile Johnson Take Two

First post: Jul 28, 2022 Latest post: Dec 20, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

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

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Aprile’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register