nap-cave

To the ICU Nurses whom Laughed at my Narcolepsy with Cataplexy

Rachel Nesmith

One single fact so urgently needing to be addressed are in-patient procedures, like major surgery, or many days on the hospital floor, because not only are most medical professionals clueless about the full tetrad of symptoms, the huge pendulum of severity of such, and the most important in my horrifying experience is sheer ignorance and refusal of acting timely to administer my much needed Xyrem, Effexor xr, and Provigil. The hospitals typically take 4 days on average to finally get esp. Xyrem approved. I have had two growing Hepatic Adenomas, very rare Liver Tumors very dangerous threat of causing internal hemorrhage via rupture triggered by a history of ever taking Female Synthetic, extra natural forms of Estrogen/Progesterone. Almost never turned 30, waiting to die... begging for a doctor willing to take my heath insurance.That Tumor was the size of a Cantaloupe right on my Portal veins.
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I have had all kinds of surgeries, most recently was my second liver resection a year ago, and 16mo ago the birth of my daughter Savannah. I have had Narcolepsy since 2001. I always carry a detailed list of my hospital prescriptions, and a bottle of Xyrem to get approved by the hospital pharmacy asap, which still tends to take days, which leaves me in such severe sleep paralysis and Hypnagogic nightmares, and cataplexy that I seem peacefully asleep(I am not) or shaking trying to not fall from cataplexy, and fight involuntary paralysis. The&nbsp;Worst thing is the pain I could not escape, as I felt it all while in SP, HH, and C. Non-stop sleep limbo purgatory!

The absolute worst hospital experiences I ever had were my 2 liver resections. The Removal of Hepatica 2010 was the most horrendous experience via Medical Care in my life. &nbsp;I had stopped responding,breathing, despite smelling salts, the next morning I heard my nurse&nbsp;loudly laughing saying Ha Ha ! "My patient has to have one Rx to wake up, and the Date Rape Drug to sleep, ROFL!" The following day, after painfully waking up trying to scream in pain in the Surgical ICU, I heard a group of nurses laughing about my Narcolepsy symptoms while watching the YouTube videos featuring Dogs experiencing cataplexy when Excited. The nurse was my nurse, "LOL I just googled videos of Narcolepsy, and lol look at these Narcoleptic Dogs fall down when happy(cataplexy)! HAHAHAHA! I may look asleep, but during cataplexy/sleep paralysis I am most often painfully aware of my environment... what I hear, feel, perhaps rarely when eyes are left open, see, but unable to move. Therefore, Though even when I was not completely paralyzed, I couldn't make a peep nor angry rebuttal in response to my two ICU nurses, &nbsp;they bet wrong thinking I was unconsciously oblivious to their most unprofessional comedic amusement at my painfully aware existence and expense. We MUST Change this and Educate the entire Medical Industry to master ALL symptoms of Narcolepsy, and that the most severe narcoleptics MUST get their prescriptions to begin healing post surgery, esp. when in the Surgical ICU for 3days, no Xyrem, Effexor nor Provigil.
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I was completely helpless, and Hydromorphone barely takes a bit of an edge of pain off me. Liver Resections are the most painful surgery I ever have experienced, the respirator leaves me unable to talk, make vocalizations.The seconds feel like hours.

Last year during my hospital stay of the second liver resection, they took me off ALL of my Narcolepsy with Cataplexy Medications, and being severely symptomatic, I was in status cataplectus by the 4th day. Horribly constant loops of cataplexy, Sleep paralysis, and Hypnogogic/Hypnamyoptic Hallucinations from Elm St. The fourth day my parents and my then 4mo old daughter Savannah came to visit me. After Mom laid Baby Savannah Beside me, excited I instantly went paralyzed (cataplexy) and torturous Hypnagogic Hallucinations of me causing Savannah to be hurt (fall) and Killing a paraplegic patient by knocking him on accident. Unable to move, severe sleep paralysis took over for 5hrs, and my parents raised a hissy until they got my narcolepsy and cataplexy prescriptions corrected. That fourth night, I finally got healing sleep thanks to Xyrem getting approved by the hospital pharmacy, and the doctor's Rx orders for Provigil and Effexor XR finally honored and administered.

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<a href="https://1.bp.blogspot.com/-hcSeobBE6L8/Vz-yxsCehmI/AAAAAAAACCk/B-lgihs5kyYIRbW-zBKrpYi8sXDHiyyRgCPcB/s1600/liver%2Bsv.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://1.bp.blogspot.com/-hcSeobBE6L8/Vz-yxsCehmI/AAAAAAAACCk/B-lgihs5kyYIRbW-zBKrpYi8sXDHiyyRgCPcB/s1600/liver%2Bsv.jpg" /></a></div>
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March 2015, 5min. before going to the OR. It's always sad to go past your little&nbsp;family,not knowing if you will see them again, on Earth.</div>
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Something must be done to educated the entire Hospital Systems in the United States RE Narcolepsy with Cataplexy, severe patients experiences when not given meds.... always I was having sleep attacks, never awake much, I struggled to exist in the most palpably torturous pain I have ever suffered. The best was the nurse whom listened to my parents that day, the worst were the ICU nurses in 2010 laughing hysterically. &nbsp;Hospital Staff and Physicians are completely unable, unaware to recognize when a patient is peacefully sleeping vs. unconsciously passed out, over sedated&nbsp;vs. the little-recognized narcolepsy symptoms of cataplexy, Sleep Paralysis, and Hypnagogic Hallucinations/Hypnomyoptic Hallucinations. &nbsp;Torture is desperately afraid of going to sleep while not treating my narcolepsy's Cataplexy, Sleep Paralysis and Hypnagogic Hallucinations, which is ultimately futile, while feeling like every second an eternity lapsing because of severe barely numbed surgical incision pain (13in across, 7in. down).
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As SleepyAmerican, leader of the Invisible Disabilities Justice League of SuperHeroes, JOIN me in educating and advocating for Hospitals, Nurses, and Doctors to humanely hospitalized Persons with Narcolepsy with Cataplexy.

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