My near death experience

7

Only a couple of people on here know about what you are about to read. If you do already know about this, it’s because I trust you. Buckle up; this is going to be a long one

The Background

When I was 3 I was diagnosed with a condition called “neurofibromitosis”. It’s a disorder that lesions (neurofibromas) to grow on nerves. It can be very severe, in fact the Elephant Man had it. It can also be extremely mild - like my case. I’ve had masses removed and some have disappeared…I used to have masses down each side of my neck (like Frankenstein) as a kid and was relentlessly teased; which killed my body image quite early. Part of NF is that it makes you susceptible to soft tissue cancer; which I had in 2008 and a in remission from.

A couple of years ago I noticed I was having balance and gait issues as well numbness, tingling, and pain in my right leg. I went to a neurosurgeon who had me do an MRI - which I barely got through because I am claustrophobic. On the MRI they discovered 2-3 neurofibromas. The surgeon recommended surgery called a “laminectomy”. They basically remove the vertebrae that protects the spine, shave the inside to give the spine space and they were going to resect the masses. Of course the entire time I’m reeling from what sounds like a complicated surgery and wondering if these things are cancerous, because if they ARE cancerous — cancerous neurofibromas KILL NF patients. The doctor and I discussed all complications: heart attack, stroke, death, complete quadriplegia 5-8%. Recovery was said to be 8-10 weeks. So, my last day of the work I told my boss “See you in 10 weeks!

The Surgery

You all might or not know this, but they basically tie you down to the table, especially since they had to flip me over to operate. Anyhow, as they are strapping me down, I joke with the Techs and Nurses “Man, people pay big dollars , pounds, euros, yen to be strapped down to a table naked…but if you take out anything with leather; I withdraw consent for surgery!” They all laughed; then I was out. What seemed like mere moments later I could hear my surgeon at the foot of my bed sticking needles in my foot, saying my name, asking me to open my eyes; I couldn’t. He had told me that after surgery they would keep me in a medically induced coma and wake me up here and there to check my neurological status.

Finally, I was able to open my eyes. But, when I opened them a whole new nightmare began. I had my arms tied down and a breathing tube in. As I said I have claustrophobia and this was horrible; I couldn’t communicate AT ALL…. Finally, it was time for the tube to come out. When they untied my arms they realized I was quadriplegic. My WORST NIGHTMARE had come true I slowly started to gain function back in my upper body. But, the left side was non-functional; thankfully I’m right handed. It was hard to talk more than 3-4 words at a time. I’d have to say them, take a deep breath, speak, and repeat. A 5 minute conversation felt like running a marathon, I even had to be fed. In the hospital you get a “bed bath”, one of my first days out of the coma, they were cleaning me up and there was something leaning against my head, which I thought was a pillow. I asked them to move it. The amazing nurse (nurses are awesome btw) said “Honey, that’s your arm”. I couldn’t feel it because all my sensory nerves were gone. At times I couldn’t tell the position of my arms; especially when waking up.

I left Neuro ICU and went to a regular floor before going to the rehab facility at the hospital. One day the Occupational Therapist came to see me. Because of the surgery my neck was EXTREMELY weak and I was basically a ragdoll. So, they go to sit me up and I tell them “Please be careful…MY NECK IS WEAK.” The OT says “It’s ok Chad…‘don’t worry; we got you’.” Then they sit me up, my neck snaps back then forward and I feel this big ZAP!!! go through my body and all the progress over 5 days was GONE…I started having severe pain and couldn’t lift my middle finger to flip them off. I was eventually transferred to their Rehab Center.

The Recovery

I was transferred to the hospital’s Rehab Center which is supposed to be one of the best in the Midwest. 5 days a week I got 3 hours of Physical Therapy and Occupational Therapy. I called it my “3 hour ass kicking”. They would stand me up in the parallel bars and had to have one person hold my head straight, one to lockout my knees, they had to wrap an Ace Bandage around my left hand and hold my right on the bar with my MAIN PT holding me up. I could usually only last a minute before I had to sit down. I developed a condition called “autonomic dysrelexia”. Where if something happened my body didn’t like — my heart rate would skyrocket to 140s and my blood pressure bottom out. I left there and eventually came to a “post-acute” rehab facility which is where I write this from…

TRIGGER WARNING: I’m putting a “SPOILER” on this because this event was traumatic to me and it may be for YOU TOO. It talks a bit about suicide, trauma, depression, etc. If that IS the case, feel free to skip to “The Prognosis”

The Event

Many of you know that last June my mom passed away suddenly. My mom was my world and along with my paternal grandmother, was the MOST IMPORTANT woman in my life. I would kill to protect her. In 2002 she had multiple suicide attempts (I found her every time — just in the nick of time), had to take care of her (as a 22 year old), and made sure she was ok. I even became suicidal myself and believe to this day, 21 years later that I was saved by angelic intervention…

When my mom was dying I was stuck here, in this bed unable to be there by her side, hold her hand as she breathed her last breaths; I felt like I had abandoned her, like I betrayed her. It was at the height of COVID too. I couldn’t eat, all I wanted to do was sleep. One Sunday night a few months later, I was lying her and felt a heaviness in my chest with pain that radiated down my left arm. I thought I was having a heart attack. I thought this was it; seriously. I got to the hospital and was admitted to a cardiac floor. Every morning in the hospital you got your blood drawn. One morning I was feeling particularly shitty: just weak, tired, and couldn’t stay awake. The nurse comes in the room and tells me that my potassium levels are at critical levels and if they get any lower I could basically collapse and die.

I had to have 2 massive potassium infusions through my IV. She told me that it might burn going in. Prior to getting the infusion they gave me a dose of morphine. The first infusion lasted four hours and felt like lava going in. I got a 2 hour break, another dose of morphine and 3 more hours of lava. I’m a rather tough and as a Professor of mine once said I’m a “resilient” person. But I was nearing my breaking point. One night I laid in the bed and just said to myself “I just give up…I’m sick of being sick, in pain, tired, etc. My job that I love is gone, my finances decimated, my independence destroyed; I just want to die…I’M READY!” I fell asleep that night, or passed out; not sure which.

I’ve heard that when people die (or are getting close) they see departed loved ones. I saw my mom — and even heard her voice. I saw her with a group of supportive people — something she always needed. I can’t really explain in writing what the place looks like, but it was beautiful and warm; everyone was happy. She told me our (my) cat was there and she missed me. Then I saw my cat and felt her kissing my face and lips; which is how she would wake me up when she was a kitten. My mom said “Here I want you to meet someone.” It was the most beautiful woman I’d ever seen. She rubbed my beard and said “I don’t know what you are talking about…his beard is nice”. As we walked through the breezy streets she said,

“This place is great…you’ll be here soon enough, I raised you to be a fighter; SO FIGHT! You can and will come here but not yet…”

It was at that moment that I woke up with nurses over me ready to perform CPR. Apparently my heart rate and BP were near zero. The main nurse said “Just cancel the “Code Blue”. After that, I found a new will to fight.


The Prognosis

I got back to the facility I’m in with a new will to fight. I’ve gotten PT on and off and currently on OT. .I’m showing REAL progress and they think I’ll take my first steps since surgery in a couple of weeks and that I’ll take my first steps since surgery. The Therapist expects me to make a FULL recovery and I expect to walk out of here.

If you have read this far I thank you. I HATE complaining and having attention on me.

@penny @missy

VIEW 12 of 12 COMMENTS
skisby:
My mother-in-law had it years ago, after a few hours scrubbing 💩 I gave up & called Servpro to do a full house scrub down. I can’t even imagine 3 rounds!
john_connar:
Mine was very different but still things in commom with such kind of experience

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