Crystal Lively

Director, ARDS Alliance Inc.

My story starts March 11th of 2020, the early days of the what would become the Covid19 pandemic. Locally everything was shutting down as a precautionary measure in Houston Texas, the big news that morning was the Rodeo closing. 

But my mind was other places much more important that day. My husband and I had been going thru IVF for 3 years and after everything, we were pregnant. We had a heart beat but a few days before they’d told us she wasn’t going to make it.  She wasn’t growing fast enough and the heart beat was too slow. They’d confirmed a miscarriage and I was there that morning for a D&C and Hysteroscopy to see if they could find out why, medically, she stopped growing and the pregnancy failed.  I was in a million places at the time not sure of our next steps.  But I knew I had my husband by my side and my parents were flying in the next day for a pre-planned trip. Originally, it’s when we planned on telling them we were 12 weeks pregnant.  Instead, it would be a different kind of mood and now I’d have to tell them the rodeo was canceled.

As I prepped for surgery that morning my mind was heavy, but we’d been here before and I knew I’d make it through.  I thought, we’d be okay and try again, like always. What I didn’t know is when I was placed on anesthesia things would go very wrong over the next 2 hours. I experienced something called Negative Pressure Pulmonary Edema (NPPE). This caused my trachea to spasm continuously and fluid poured in my lungs. I was placed on a ventilator and immediately put in a medically-induced coma with <2% chance of survival. I was diagnosed with Acute Respiratory Distress Syndrome (ARDS) and Acute Respiratory Failure with hypoxia. They told my husband if I survived, I’d need a lung transplant.

I was transferred to the Surgical ICU where staff worked to get the fluid out of my lungs as I was experiencing severe sepsis and septic shock. My husband was given two choices: ECMO or a specialty bed, RotoProne. The medical team really felt it best to go with ECMO due to the seriousness of my situation I need the additional oxygen support. My husband knew from all of our IVF testing and rounds I clot extremely fast. He discussed it with the medical team and he chose to go with the specialty bed to start.  A Representative came and trained the staff on how to use the equipment properly, as this was specialty equipment and had to be brought in from San Antonio.  I was placed into the RotoProne bed and rotated side-to-side in a prone position (facedown) for the next several days, allowing fluid to drain from my lungs and keep excess pressure off my lungs and heart.

Everything was very touch and go for several days. About a week in a mucus plug formed partially blocking the intubation tube and they had a crash cart and team on standby as my vitals were critically low. Once the blockage was cleared, I was placed back into the prone position and stayed in a medically induced coma for several more days.  Just shy of 2 weeks I was extubated and placed on a Bi-PAP to assist with my breathing. Eventually I was moved to 10 liters of oxygen without the BI-PAP.

I didn’t know at the time but I’d been suffering from severe ICU Delirium and Psychosis. Due to coronavirus concerns in the hospital and the fragile state of my lungs, I was moved from the Surgical ICU to the cancer wing where there would be no COVID-19 patients. Physical and Occupational therapy were started and slowly, I began to relearn how to move, sit up on my own and to try stand and walk assisted, basic tasks of daily living. There were some big complications with strained ligaments, drop foot, the full loss of use of my right arm & over all muscle depletion head to toe. I would have a long road to recovery here, but my lungs were better than expected and this they advised was good news as I wouldn’t need the lung transplant after all.

March 26th 2020, with lock down, now fully in place due to coronavirus, we were advised to plan for discharge to home with in-home care including a Nurse, Physicians Assistant, Physical Therapist & Occupational Therapist. My husband arranged for an oxygen system, walker and shower chair that I would need. Even though my right lung was still filled 25% with fluid, I was discharged after 16 days.

I’m recovered now. I have scars I carry with me that will permanently serve as a reminder of what happened. I do believe my husband’s choice that day saved my life. Early on, I joined a support group on Facebook for those who have experienced ARDS.  Not everyone has the same exact journey, but it is nice to talk with people who understand what I’ve been through. I have learned that I have Post Intensive Care Syndrome (PICS), the disability that remains after surviving critical illness comprised of impairment in cognition, psychological health, and physical function of the intensive care unit survivor. I also have Asthma now and still deal with exhaustion.

I’ll forever be changed because of this experience. But it is this experience and the last couple of years talking to others that inspired me to network with Paula and Susan and get ARDS Alliance set up.  I want to make a difference for survivors, for families in crisis, for families who’ve lost loved ones to ARDS and last but not least, the medical staff that work with the patients and their families.  I want them know they’re not alone in this journey. Together we can create a supportive and inclusive network to help improve lives of everyone impacted by ARDS.

Crystal Lively - Director

Early on, I joined a support group on Facebook for those who have experienced ARDS.  Not everyone has the same exact journey, but it is nice to talk with people who understand what I’ve been through.