Updated: Jul 13
Patti was discharged with only 4L of Oxygen and an inhaler and sent home to figure out how to clear her lungs and heal on her own. (Basically, good luck and take care)
Written by Carolyn Andrews (Author www.TrueStoriesofCovid19.com) Story shared by Patti Gilliano
Patti Gilliano, age 56, Executive Nurse Leader/Athlete, Meridian Idaho (pictured here with her husband Steve, after completing a 10-mile run in Red Rock Canyon in Las Vegas)
MY COVID-19 STORY:
I have been a nurse for 34 years and have also combined a wellness career and fitness programs in my life since I was 18 years old. I have no comorbidities and have trained almost daily. I ran nearly 2 miles a day, have been active in Orange Theory training 5-6 days a week, and in high-intensity interval training (F45) 3-4 times a week, Pre-COVID-19.
I have been in Executive Nursing Leadership and Administration for 9 years of my career, as well as having held multiple roles as a nurse in perioperative, critical care, and emergency. I thought I had seen it all until I watched patients unfolding with COVID-19 earlier this year. I felt, as did many medical professionals, that we had been hit with something unknown, that we were "just giving our best guess" on how to treat. Many patients survived, especially with mild symptoms, and were discharged home but we later learned that many that had been discharged still had lingering symptoms and serious after-effects that still needed follow-up care and rehabilitation.
Many recovering at-home that were not gravely ill, were refused to be seen again, as they were still showing a positive Coronavirus result, or doctors were telling them to wait it out and they would likely improve. These patients needed a “mobility” plan to reset their system or their symptoms linger, as the damage is done in their bodies, causing them to develop long term issues. (This group of Survivors is known in the COVID-19 world, as Long-Haulers) Long-Haulers are people who have not fully recovered from COVID-19, weeks or even months after first experiencing symptoms. Post-viral syndrome, or post-COVID-19 syndrome, refers to the constellation of symptoms Long-Haulers are experiencing)
The week of August 24th, 2020, I became a Coronavirus Survivor and am, at the writing of this story, (October 14th, 2020) now considered a Long-Hauler.
What in the world has happened to me? Well prepared, I masked and socially distanced, did IV vitamin C twice a month, took all my vitamins and supplements including D3, and Zinc, and a host of others. I eat lean, a clean diet that no one in my family likes but is a diet that helped fuel my body; no one could keep up with me at work or for a run. So when I say healthy, I felt ready to pass on COVID knocking at my door.
Life was full of challenges this year due to Coronavirus. Downsizing left me looking for a new role, so I had been relatively quarantined from July into August. My husband of 3 years, Steve, and I had sold our house in another state and flew to St. Louis and back July 30th- August 1. We were prepared for our trip and took all the required precautions: hand sanitizer, masks, and vitamins with us on our trip- we used them religiously. We did what we thought was everything possible, to keep us from contracting the virus. Sadly, it wasn't enough.
About a week to 10 days after our trip, my COVID-19 experience began with chills. I had them throughout the day and the night and it almost felt like burning and cold skin. I really thought maybe I was peri-menopausal, but it was not a hot flash. I justified this symptom as the usage of a new thermal burn I was using for fitness training. WRONG!
Friday, August 21st, my husband came home from work with a severe headache, sinus congestion, he was just not feeling well and my nursing instincts kicked in and I thought he might have symptoms. We had also been dealing with smoke blowing from the West forest fires, so I told him to just take it easy but if he didn't start feeling better, that he needed to test for COVID-19, as he has comorbidities and the virus could become very dangerous for someone immunocompromised.
That weekend I started to feel tired, and a little winded. Steve continued with symptoms and by Tuesday, August 25th, I drove him to a testing site. Friday, August 28th, his results were positive. That same night I started to get sick: nausea, diarrhea, and chills worsening. Saturday progressed and I could not get up without feeling sick and just completely winded. Sunday I was worse and began to experience abdominal pain over my stomach. I had intolerable burping with a feeling of a cardboard stick working its way from the back of my throat wedging my stomach open. Breathing became more difficult, nausea worse and chills, but no fever.
Monday, August 31st, I went to the ER, I asked for hydroxychloroquine or Ivermectin ( we had used Hydroxy successfully in our hospital through June 30th, but now it was banned). I was familiar with Ivermectin from successful use in other states from doctors I knew. It was found to be quick, effective, and outpatient halting symptoms.
In the ER my O2 saturation levels were 92-94%, chest x ray showed atelectasis and the doctor confirmed that "yes, just a little of your left lower lobe is collapsed in your lung". It was suggested that I go home, get into bed and rest, drink fluids, and use NSAID's, with no other support offered. He felt since I was so healthy otherwise that I should be fine, but told me to return if I got worse. I was dismayed and told him I was really struggling and without anything to shut this down I was scared. At the time I do not think he mentioned labs or was not concerned by them. I was too sick to think or ask about labs, and my husband who was mildly ill had brought me and was not allowed in with me, so I couldn't push harder to insist on treatment. So as suggested, I returned home to try to recover and watch my symptoms closely.
Tuesday, the next day, I was worse and all of my symptoms were just increasing. I was able to get a Tele-med appointment with my doctor. In my opinion, it was uneventful because he couldn't listen to my lungs, heart, take any bloodwork, or suggest any further evaluation, as we were just face to face on the phone. I asked him for a script for hydroxychloroquine or Ivermectin and he responded that one was locked down, and the other he had not heard of so he could not prescribe it. He ended our call with, "If it gets worse, don't wait, go to the ER": if pulse ox drops lower than it already was (90-92%) or my lips turned blue, that I should go straight to the ER.
That morning I was so nauseated, when I stood up, I passed out and felt I needed to get help and treatment. I gave it a few hours, while mostly hyperventilating. As I inhaled, the only way to describe the way it felt to breathe in, was like "sucking air in outer space". By night time, following about 5 episodes of nausea, lightheadedness, and passing out, I told my husband I have to get to the ER, or I was not going to make it. He drove me back to the same ER, and now they were ready to do something.
In the ER another doctor felt that my chest X-ray looked worse than the one from two days ago, and because my pulse ox was now 88-90%, he was going to admit me. I laid there from 12:30 am until 4:30 am just on oxygen. I asked for some IV fluids, but they declined, as they "didn't want to overload me." I knew that I needed something and was persistent, so they gave me half a bag of IV fluids, and then later agreed to give me the rest of the bag.
I was at our satellite ER, so an ambulance took me over to the hospital. I was admitted to ICU and was given fluid and now with lab work FINALLY completed, it showed significant inflammation and elevated D-Dimer levels which could cause a blood clot or PE and I was immediately started on a blood thinner.
Once the doctor came in around 8 a.m, I was adamant that I had to have something, before I ended up ventilated. I did not hear back right away from him, as permission had to be obtained for Remdesivir and at this point outside of being given anti-nausea meds and an antacid, I was still no better.
I contacted a physician I knew at the hospital and a colleague asking them to look into my plan of care. Within a few hours I was signing consent forms for 6 doses of Remdesivir and convalescent plasma. I started to show some improvement and was on 4-5L of oxygen. I spent the rest of my 6 day stay on the COVID unit in med-surg. The treatments helped and although still on O2, I could walk now as far as the bathroom. I was sent home with an inhaler, 4L of oxygen, no anticoagulant, but I was given meds for indigestion. I was given the "take an aspirin and call your doctor in the morning" line and sent home to figure it out. Really? Leaving the hospital on oxygen, what do I do tomorrow and the next day?
The next day I called my doctor, set an appointment to see him to figure out what to do from here. How do I get off oxygen? How do I get better? Rehab? Tests? I arrived at the hospital with a D-dimer level over 1500 and left at 600, normal is 500, so I was still at risk for a pulmonary embolis. Ready to follow up with the doctor 2 days after discharge I received a call that morning from them. Two different people called opposite of the other. The first said I could not come in because I had a COVID-19 diagnosis. The other said I couldn't come in because my husband had a COVID-19 diagnosis- he was back to work already.
I was beyond livid and I said "you need to escalate, I need my lungs assessed as well as my heart". "I also need to know what I can AND should do from here!?" They worked it out for me to be seen in the car. The doctor listened to my lungs and now understood why I was so concerned. I still could not breathe in and even feel it. Using a spirometer, I could barely hit 500 on a scale of over 3500. Not good. How was I going to get better? He decided to order a repeat Chest X-ray and CT of my lungs.
I expressed my concern with the head pain I had and the uncertainty of how my heart was being affected. (I was having lows of 40 bpm, and high's over 95 bpm, at rest). He agreed with my causes for concern and ordered labs. Multiple calls back to the office, it took a few days to get the labs ordered and the chest X-ray, and the whole thing was a debacle but I did feel well enough to get out on September 18th, with my O2 tank. The labs showed still 600 D-dimer levels; risk for PE/Clot. The chest X-ray apparently looking worse than on admission.
The prior two weeks I was hydrating, and really boosting herbs, vitamins, and just foods that I could tolerate as my appetite was just not there. There were all kinds of challenges coordinating doctor office visits, calls to insurance, to get approval for the CTs, but an echo of the heart could be done without prior approval??
I was home for 2 weeks, and still not receiving the help that was needed to heal me and my diseased lungs, so I decided to help myself. Armed with my pulse ox reader, and my heart rate monitor, and O2 tank, I decided, with my husband at my side, that I would create a cardiopulmonary rehab program, because my lungs felt full of liquid cement and if I didn't get them breathing and moving soon I was going to lose the fight to clear and repair them.
My gym was gracious and supportive, proud that I wanted to slowly but steadily rebuild myself. Saturday, September 19th was my first day of "my self-designed program": I walked a while, rowed a while and lifted some weights. I kept my heart rate no higher than 110 and pulse ox at 98 or better, so I boosted from 4L to 5L and it worked well. The best part as I did this routine day by day, was that I felt things moving in my lungs, like breaking apart chunks of ice, after I was done I felt good. Each day for the last 10 days I have slowly progressed just as if I were at a formal cardiac rehab facility. If no one was going to look at my life prior to COVID-19 and see how healthy and well I had been, I was damn sure I was going to heal thy self.
That night after the first workout I started looking for literature, and support. I found many articles to fuel my ideas and to provide me hope while I also learned about the group that I had unwillingly become a part of: "The COVID-19 Long-Haulers".. (not a group that I hope anyone ever has to get into, but it IS filled with so many great members.). I chatted on the support groups and learned tips on what to watch out for, avoid, or try. I asked questions, as I could not find a doctor locally to prescribe Ivermectin and I searched a doctor out of state, as literature was indicating that it would kill any remnants of the virus. In doing so I also found some help and ideas to consider; a hyperbaric trial. I had such tightness in my lungs to start, but with the work done in the last 10 days, it had improved greatly. I was down to 2 L of oxygen, but during workouts, I was still at 5L.
In my digging for any kind of solution, I found a brochure someone had given my husband on Prolozone therapy. It was from a Holistic center in my area. I made an appointment on September 24th, and we discussed my health history and current status. I did the IV and felt fine. I got home and my lungs felt even better than my workout that morning. I had been trying to stay off of oxygen for minutes to hours prior and I had moved to about 2 hours off of O2. That Thursday night I was able to progress to about 2-3 hours without oxygen. I woke up the next morning and found upon removing my oxygen, I could stay at O2 saturation levels of 97-99%. I have been able to be off of O2 since then unless I go to do do my workout. I am progressing and feeling better.
Sadly the delay in limited doctor office hours, calls to voicemail and constant follow ups with insurance and such, I learned there's recertification, and then a third party must also approve in order to get tests done. As of today I still have not gotten the CT head and lungs. The downside I am seeing is on the survival of COVID, the plan and care are greatly remiss. I, knowing what to do, and what to ask is not common for those in the general public without medical training, or sadly, the older person who has no family or friends, to look out for them. On one of the support groups, I read about a 51-year-old just laying in bed on O2 a few weeks out of the hospital and not progressing. She is at risk for clots, pneumonia, and just withering away without any-one to encourage her to do more than just lay in bed, to help herself heal. It's very sad that many people who have been effected are this helpless and don't know what to do. I feel if I did not have the medical background that I did, that I may not be here telling my story today.
I am sharing my story and speaking out because we need to get a game plan together, to treat and help our Survivors to progress and get back to the level of health that they had, Pre-COVID-19. I am appalled at what I have read from 3 different groups nationally, and I really cannot give too deep advice or suggestions, as it could be misinterpreted and I cannot prescribe medication, nor is that the forum. I know that if a Front-Line professional, with a medical background, could encounter what I encountered, there are people out there who are just not getting treatment: they are scared, still having after-effects and health issues, they don't know where to go and are getting bounced around for weeks and months and in many cases told that this is just "in your head and just anxiety" and in some cases are prescribed anti-anxiety medication.
There are centers out there, doing studies and who are willing to see post COVID people and CAN help them. These centers offer the promise of hyperbaric treatment for lungs, and Prolozone, to treat multi systems.
I am a Survivor, a Fighter, and will continue to support and connect with others and work with them, as I am getting stronger every day. I plan to continue to provide help, to continue to get the word out and raise awareness, make connections, refer people to look at articles and places to help with Post- COVID care.. They need it, now not months from NOW!!
I hope you found my journey and quest forward helpful; I am grateful to those who were able to help me get approval to receive Remdesivir and Convalescent plasma, as I know that they were not completely approved yet by the FDA. Those doctors that helped push these through to me, helped me to still be here for my family TODAY. I am forever grateful.... In closing, you will be definitely be hearing more from me, as my journey with COVID-19 will not be for naught.. Patti Gilliano
My husband and best friend, Steve. At a holiday party,
My boys and I, Brendan, Dillon, and Dalton. My world!
My youngest son Dalton and I, Pre-COVID-19. I both felt and looked healthy.
Me the day after discharge from the hospital, just the 4L of oxygen and I, left to figure the rest out.
Me, today. October 14th, 2020.. a Survivor, a Fighter, and back to my athletic self -coming back stronger than I was before!!