I Want My Old Life Back
My name is Nikki, and I am from northwest Tennessee. I am the mother of 3 amazing kids, and I am also engaged to my wonderful fiance. Before mid-February, my career was as a full-time Physical Therapist in the home health setting. Enjoying my daily workout sessions and running 3–4x’s a week was a big part of my life. My current medical conditions include hypertension controlled with medication, and asthma, controlled with maintenance medications. In the past, my asthma was classified as “moderate intermittent.” Occasionally I would have flare-ups; however, I have had no exacerbations over the past five years.
On Jan 15, 2021, I had the 1st Moderna COVID vaccine with no side effects other than localized arm soreness. On Feb 12, 2021, I had a 2nd dose of the Moderna COVID 19 vaccine. 48hrs after the second dose, I had an onset of severe nausea/vomiting. 72hours after the injection, I began having difficulty breathing. I was still working and seeing patients; however, I had to use a rescue inhaler multiple times. My breathing continued to worsen. On Feb 17, I became so ill I had to go to E.R. and was hospitalized. On Feb 19 (one week post-injection), I had to be placed on the ventilator due to respiratory failure. The hospital treated me for an allergic reaction with epinephrine and other medications to address what appeared to be an asthma exacerbation.
After a few days, I was weaned off of the vent; however, this did not last long because two days later, I was intubated again. I developed bilateral pneumonia and MRSA (a blood infection). After a 3rd time of having to be intubated and placed back on mechanical ventilation, I was life-flighted to a larger hospital. I developed laryngospasms but was able to be weaned back off the vent and, after a week, was able to be released home on supplemental oxygen.
I was readmitted to the hospital three days later, being life-flighted to a larger hospital due to increased shortness of breath and blood clots (DVT, possible Pulmonary Embolus). I spent time in the I.C.U on BiPAP machine and was given an extensive treatment of blood thinners. Once again, I was released home after about a week with home health therapy and nursing services due to weaknesses that had developed.
Home health helped to manage my medical conditions, breathing, and medications. I was home only for a few weeks when I started to feel a little better with breathing. I noticed I began to have more difficulty with my blood pressure fluctuating between hypertension/hypotension and tachycardia (increased heart rate). I also started having more nausea, vomiting, chest and upper abdominal pain, night sweats, dizziness, and abdominal distension (I looked eight months pregnant). I went to a cardiologist who stated my heart was good and that my persistent symptoms were G.I./respiratory. I ended up going to the E.R., where an Abdominal CT was performed. Other than elevated liver enzymes, doctors could not find a source nor reason for my symptoms.
Soon after returning home, I noticed blood in a bowel movement. I was dizzy upon standing and fell, hitting my head and side of my body on the floor, resulting in a trip to the E.R. I was then life-flighted to a larger hospital for shortness of breath and a G.I. bleed. Also, when coming out of anesthesia for my endoscopy/colonoscopy to find the source of the bleed, I began having breathing trouble. This time doctors identified that my lungs were clear, but the tightness was coming from my throat and thought it was due to vocal cord dysfunction/laryngospasms. At discharge, they released me home and set me up with a vocal cord specialist appointment.
An E.N.T./vocal cord specialist performed another laryngoscope. I was evaluated by their speech pathologists, who confirmed I was having a vocal cord closure and diagnosed me with Paradoxical Vocal Fold Movement Disorder/Vocal Cord Dysfunction. She gave me exercises to perform when having trouble breathing. These exercises should open up the upper airway/vocal cords and should prevent the need for reintubation, as long as lungs/bronchi are clear and asthma is under control.
I was home a little less than a week when my breathing worsened, and exercises were not helping. At a follow-up appointment with a pulmonologist, my doctor was alarmed by the increasing struggle to breathe on oxygen. He stated I needed to be admitted to the hospital immediately. I was quickly whisked away by wheelchair across the complex to the hospital’s I.C.U. My breathing took a quick turn for the worse. I underwent intubation for the 5th time since Feb requiring life support. After emergency intubation and inserting a nasogastric tube, I was sent to yet another larger hospital on my 4th life-flight.
I spent the rest of the week in the I.C.U. while the medical staff tried to wean my lungs off the vent. My lungs had improved; however, after multiple days of trying to wean me off the vent, they were unsuccessful due to severe laryngospasms. It was decided to extubate in the O.R. under general sedation to relax the spasms/vocal cords. Under anesthesia, laryngospasms continued, and after multiple attempts to extubate, a tracheostomy was necessary to maintain the airway open. The Surgeon E.N.T. stated that the tracheostomy would be necessary for the “foreseeable future” as they were unsure of the source of the laryngospasms. The spasms appeared to be neurologically based. Doctors wanted to ensure the spasms would not occur again, and until they could find the source, the tracheostomy was to be left in place. This would avoid the need for emergency reintubation/secondary tracheotomy to maintain an open airway.
During the hospitalization, it was also noted I had a decrease in sensation of both legs, increased difficulty walking with bilateral foot drop, and the neuro team finding positive/abnormal reflexes. I was having muscle cramps, twitching, and pain. I was so weak I could not get out of bed and transfer without significant assistance. Once they pulled the urinary catheter, I was not able to void it. It was noted that my bladder was full, and I did not feel the urge to urinate much less initiating voiding. As a result, I had an in/out catheter procedure.
Multiple blood tests, full spinal and brain C.T./MRIs, and neuro evaluations were performed daily. An exact source was unable to be found. Nausea and vomiting were ongoing. The medical staff failed to wean me off a feeding tube, stating I had developed Gastroparesis. I kept the nasogastric tube upon discharge for tube feedings supplemental nutrition.
Along with the G.I. issues, I was also having trouble with speech and swallowing. I was discharged to an inpatient rehabilitation hospital still to have nursing help with medication and trach management. I attempted to regain more strength with P.T. and O.T. and improve swallowing, breathing, and speech with speech therapy. After a couple of weeks, I returned home with a tracheostomy requiring supplemental oxygen/suction/humidifier machine for breathing management, nasogastric tube for feedings, and multiple medications. It was advised that therapy services continue in a home health setting due to severe weakness and limitations in mobility.
To summarize, I am 7months post-COVID 19 injections. I have been hospitalized multiple times from Feb–May, during the first 100 days since all this began. I spent over 60 days in the hospital with a total of 20 days; intubated on the ventilator. This included inpatient stays at six different hospitals, including multiple days in I.C.U.s requiring five separate intubations on mechanical ventilation for breathing support, four life-flights from smaller hospitals to larger hospitals. Since June, I have had multiple follow-up visits with doctors and specialists, including Primary Care Physicians, Cardiologists, Pulmonologist, Urologists, Gastroenterologist, Neurologists, and E.N.T./Voice Specialist/surgeons trying to manage, treat, and diagnosis the current impairments. I have also continued PT/OT/ ST in a home health setting and progressed to outpatient P.T., exhausting all but a couple of therapy visits that my insurance allows.
Despite continued interventions to improve strength and mobility, I have gone from using no assistive device to a cane, then switching between a walker and forearm crutches in the home mobility/short distances and requiring the use of a wheelchair for longer distances. I use bilateral A.F.O.s (ankle-foot orthosis/braces) to help with bilateral foot drop.
I have a tracheostomy, which I have been told is long-term, given I am still having idiopathic laryngospasms cutting my upper airway off completely at times. I have to use suctioning/ humidifier/supplemental oxygen machines to assist in airway and breathing management. I still have significant weakness, mainly in my legs and right hand. I have muscle cramps, fasciculations, spasticity, and pain, especially at night after increased activity during the day.
I have to self cath for urinary voiding/retention, 2–4x/day. The urologist performed urodynamics testing showing I have hypotonicity in my bladder with minimal to no neural activity when the bladder is full, showing a neurogenic bladder. It has been suggested that implantation of a bladder stimulator or suprapubic urostomy to assist in ease of self cath/urination. I cannot work and have difficulty with regular daily activities. I become very fatigued, attempting to watch and be a part of my childrens’ extracurricular activities.
I am on 21 different prescription medications, not finding any significant improvements with current medical conditions, but mainly symptoms and management of states are the main focus as the actual root or cause seems to be of continued question and confusion. During all of my hospital stays and my medical doctors’ appointments, I have had various responses from doctors, nurses, and other healthcare providers. Some doctors believe that the vaccinations directly caused all my symptoms, but there is no way to prove it as the products are new. They witnessed several patients post-vaccination having an array of medical problems ranging from respiratory to neurological to cardiovascular. Some patients were in the hospital at the same time I was in the I.C.U. Other physicians ignore the vaccine component treating only the symptoms and conditions, not relating one thing to another using a whack-a-mole approach.
A few doctors said flat out, “No, it’s not related.” Still, when asked why it can’t be related, they would divert the conversation based on the fact I had asthma before. I was also told “it was a coincidence,” being that I was already predisposed and would have developed these medical problems with time with or without the vaccine.
I’ve also had some not say one way or another. Still, you can almost feel the biased nonverbal body language as you are written off for suggesting it is related to the vaccine. Most of the time, these health professionals say, “Well, I’m not sure what is causing it, but I believe it will get better,” or “Sometimes things happen, and we never know the cause.” I also get the “Correlation vs./Causation” analogy.
In general, it feels like healthcare providers are afraid to relate an adverse event post-vaccination. They are fearful it would deter others from getting the vaccine and be ostracized as anti-science. It doesn’t make any sense. Admitting and treating side effects and adverse reactions should not have the stigma and shame associated among healthcare providers and the public.
I was censored on social media. My personal story was removed with a violation of community group standards by “sharing misinformation.” I don’t understand when all other medications and medical procedures have adverse reactions and side effects. Doctors seem so readily available to investigate and find treatment for all of those. Still, yet with this one product, it is so different. I have never been a “conspiracy theorist”, having always supported vaccines and received all of mine, and have never thought twice about the larger government health organizations and intentions, but how can I not begin to question why and what’s going on as different now? Suppose this vaccine is for the greater good and helping reverse this pandemic by keeping people safe. One would think healthcare providers and government organizations would want to be on the side of caution and investigate reports like these thoroughly?
It is easy to discredit and ignore those who have had medical responses that destroy our lives and health when we are not personally experiencing it. However, when you are one of those numbers, those statistics that don’t seem to be reflected in national reporting numbers, it’s a completely different story for you, your family, and caregivers. This experience is like being in the ocean surrounded by water, seeing a lifeboat approaching, and becoming excited in anticipation of getting help. Still, instead, it ends in helplessness, confusion, frustration, and fear, as they yell, “Hey, the next boat will help you,” or they just flat out ignore you as they pass by.
I want to be heard. I want others going through a similar post-vaccine adverse reaction to know they are not alone. I want our medical community and government to help us, not shame and ignore us. I want to be helped. I want my health. I want to have hope that things will get better. I want my old life back. I want to work again. I want to enjoy my kids, my fiance, and LIFE! I am not an anti-vaxxer, I was pro-vax, and I was trying to do my part and help; now, where is my help and my voice?
