Tanya Noblitt, LCSW, ARDS SurvivorLike my fellow survivors and their loved ones, ARDS came from out of left field for me.

In early March 2023, on the cusp of turning 35 years old, I went to the local emergency room with a dermatological cyst. It was small and they started me on antibiotics. Two days later, I went to the emergency room at the bigger medical campus. I was still having pain and wanted to be done with it. After being unable to tolerate topical anesthetic, a surgeon made the decision to admit me for twilight sedation and management of what looked like a very small problem. This tiny problem started a chain of events that turned my world upside down.

I later learned that my mom received a call that afternoon from the hospital telling her to get there, and fast- “she’s crashed.” A lot of that is a blur for my family as they rushed to the hospital and all they knew was that I was in respiratory distress. The intubation tube was too big for my airway and the surgeon had done an emergency cricothyrotomy. They were eventually able to get access, however having the larger tube caused inflammation which became a problem when I was later reintubated.

I have glimpses from when I was starting to be weaned off the ventilator the first time around. I was experiencing delirium on top of all the medications pumping through my system. My mom and sisters were standing around me and were explaining that there were complications after the procedure, quite a bit of time had passed since the day of. I had developed sepsis and ARDS. My blood sugar was over 600 and I was spiking fevers of 104 and above. I had chest tubes in both lungs. I was moved into the prone position and put on Heli-Ox. I had more medications being pumped into my body than I can now name. I have no doubt that a lot of my delirium was from my brain being in overdrive from the meds.

The treatment team did SBT’s, or spontaneous breathing trials, every day. My neurological status was constantly being checked. When I first came off the vent, I was put on a full BiPap machine. I had a really hard time with this and kept pulling it off due to confusion and discomfort. Unfortunately my vitals continued to drop, and I had to be reintubated.

That’s when they noticed that I had a laryngospasm, meaning my vocal cords involuntarily spasmed and blocked my airway. It’s very possible that this was also the precipitating event that led to the onset of respiratory problems.

I think the most terrifying moment that I remember from my hospitalization is being reintubated. I remember my mom and aunt trying to encourage me to tolerate the BiPap as a large team of providers surrounded me. I stopped fighting. I remember the Respiratory Therapist very clearly- her salt and pepper hair, her quick movements, and comforting words. She was the only person who talked to me, acknowledged me as a terrified patient.

I stayed in the Trauma ICU, then stepped down to the medical ICU when I was successfully extubated. I was put back on BiPap, then hi flow oxygen. I had failed my first swallow study and aspirated, resulting in pneumonia on top of everything else I had going on. I was allowed 4 ice chips per hour and my mom diligently counted them out. Each ice cube was the best thing I’d ever tasted. I finally passed my third swallow study and was able to move to an ICU stepdown floor. I had my first shower in weeks. I can’t even describe how it felt. I think it took about 5 more showers before I felt clean.

When I was on the medical unit, I demanded to go home. The compromise was that I would go to my mother’s house and stay with her for as long as I needed. My mom is a nurse and overall an amazing support and she took such great care of me.

What I wasn’t prepared for was the physical and emotional aftermath. My body felt like jell-o for months. I was extremely fatigued. Being unable to even get yourself to a bathroom takes away your dignity, and I spiraled deep into depression and post-traumatic stress disorder.

I found myself on facebook, and I searched “ARDS.” That’s when I was connected to the ARDS Alliance and the absolutely incredible weekly support group via Zoom. I was alarmingly fresh from my own hospitalization, and I had the opportunity to meet people in all stages of recovery. There are survivors, and family members of survivors and those who lost their health battles. We all share a common thread and every week I look forward to being wrapped up in their warm hug, whether it’s lighthearted conversation or talking about the tough stuff that no one else would really understand.

My recovery has been complicated by two further hospitalizations due to weakness, numbness, and tingling in my legs and feet which has me using a cane as I continue to work on my endurance. I had declined acute rehabilitation when I was discharging from the hospital because I was still in shock and wanted to get as far away as possible. I wound up going to acute rehab in August 2023 and it was truly what I needed to find my new groove.

In November 2023, I left my job within the very healthcare system that had provided my care, as they were (ironically) unable to accommodate my recovery though I had been promised time and time again my position was secure. I found myself making an unexpected career move and it’s been a blessing. I know I am incredibly lucky to be able to work a flexible schedule that allows me to continue seeing my doctors and focusing on really recovering-from the inside out.

If I were to pass along any words of wisdom, within this first year of recovering, it’s to be prepared for not only the physically unexpected but also the emotional. Get a therapist, attend the support groups, lean on the people you love. Do things that make you happy. Being close to death is not something you can push down. That goes for caregivers and loved ones, too! The people we love also went through a trauma and need to have their own ways of support and coping.

Set small and achievable goals for yourself every day. I started off with walking a few steps every hour. And if you’re unable to meet that goal, give yourself grace and forgiveness. Listen to your mind and body. If you have a loved one who can help manage setting follow up appointments, driving you to them, and any of your other needs, it’s helpful. If not, a lot of insurance companies have case managers and may be able to help you arrange for the supports you need.

We are resilient. We are survivors. We are caregivers and loved ones. We have been through so much and through all that darkness, there is light- you are not alone. We’re in this together, no matter what stage you’re in of your ARDS experience.

And I absolutely would not be continuing to make progress without my family, friends, and the support I’m so very grateful for every Tuesday night on Zoom