Ask The Nurses Episode 81
Manage episode 335205932 series 3366620
After my second dose 2/12/21, less than 36hrs post V, I had nausea and GI issues and then breathing trouble. Exactly one week post V, secondary to hypoxia from respiratory failure, I was placed on the ventilator for the first time. This was the first of 5 times on the vent, 4 life flights, 6 different hospitals in 2 different states, 1 inpatient rehab facility for a month, Outpatient and home health PT/OT/SLP, Outpatient Pulmonary Rehab, 2 surgeries including tracheostomy and implanting suprapubic catheter, placement of feeding tube for a month, ongoing monitoring of 5 different specialists and my Primary, multiple tests/imaging, and 24medications… And yet still a year later, no huge improvement and more questions than answers. During this time I went from 3 meds to 22 medications, from walking/ jogging and working out to only able to walk short distances with a crutch and requiring wheelchair for longer distances and requiring supplemental oxygen and a tracheostomy to breathe, being an active mom of 3 to struggling to find enough energy to get up and do normal daily care, from working full time as a Physical Therapist to now unable to work, going from having previous diagnoses of mild intermittent controlled asthma, Mild HTN, and occasional migraines to.... having added all the following diagnoses: Respiratory Failure with hypoxia, Severe/moderate restrictive lung disease, Severe Persistent Asthma, idiopathic laryngospasms, vocal cord dysfunction, gastroparesis and needing a feeding tube at one point, GERD, GI bleed, Blood clots, Bacterial Pneumonia, Sepsis, Unspecified Neurological Disorder, neurogenic bladder requiring suprapubic catheter placement, muscle weakness, Ataxia, Hyperreflexia, Gait Abnormality, spasms, acute and chronic pain, critical myopathy, and Systemic Inflammatory Response Syndrome. I have been getting passed from doctor to doctor with no real answers just treating the symptoms with bandaids until the next big thing pops up. Last year my medical bills added up to more than 1 million dollars billed to insurance and between what was not covered and billed to me/ medical equipment/ and loss wages this added up to thousands in bills just last year that still continue. I’m currently trying to save up enough money obtain a better wheelchair as mine is too heavy and did not prove support I need, a portable oxygen concentrator so I don't have to haul O2 tanks around, and pave our driveway to come closer to the house to gain easier and safer access to my home. I’ve been blessed to be able to pay monthly bills throb since savings and my previous work benefits but all these medical and other expenses are becoming overwhelming. I've just started a Facebook business Nikki’s Nik-Naks to attempt to sale some crafts I've been making to help offset these expenses but it's not taken off yet.
A year ago I had no idea how much my life would change medically, physically, socially, emotionally, and financially... one shot, one decision to do what I thought was doing my part as a healthcare provider, was the one event that would forever change my life and set forth a cascade of medical and life events that I and my family are still having to deal
I just want the SAME medical support and effort to figure out what is going on in my body, AS THE SAME amount of effort, financial, and social backing that was put into the support and promotion of the one thing that caused it! ❤ #Realnotrare #IWantToBeHeard
My updates page and full story can be found at:
https://www.facebook.com/groups/185616776242361/?ref=share
My video with the full story and pics of my journey can be found at:
https://youtu.be/sNH8akbyYMw
https://www.lifefunder.com/helpnikki
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