What It's Like to Wake Up After Months on Life Support

By Nicholas P. Dodge

When your loved one finally opens their eyes after weeks on life support, you hope they will come back the way they were. I can tell you what it was like from the inside. I spent 241 days on ECMO, and I woke up more than once.

I am not a doctor. This is my experience, not medical advice. Your loved one's medical team is the only reliable source for their situation.

Going under

On May 17, 2021, the doctors gave us a choice: a ventilator or risk not surviving. The thought of being intubated terrified me, but I had no other option. I cannot remember the exact moment they put the tube down my throat. Everything just went dark.

At the time, I had no idea what ECMO was. I had never even heard of it. On June 4, 2021, while I was unconscious, I was placed on ECMO and transferred to Advocate Christ Medical Center.

The first time I woke up

For about twenty days, I was on both the ventilator and ECMO. I would not wake up until they could remove the breathing tube. It was a slow, cautious process. The tube was miserable, and I was on heavy pain medication to tolerate it. The ventilator came out on June 24, 2021.

Maureen remembers that moment this way:

"I'll never forget his blue eyes as he looked up at me. He was in a fog and didn't recognize me, but I didn't care. He was awake and off that ventilator. It took some time for his voice to recover after having the tube down his throat for weeks."

I could not speak. They gave me a small whiteboard, but my motor skills were so weak that writing was hard. Maureen says that led to some colorful expletives. Through practice in physical therapy, I went from whispering to speaking.

When your mind plays tricks on you

While I was on life support, my mind drifted between reality, dreams, and what felt like something in between. I knew I was on ECMO and understood what it meant, even when nothing else made sense.

I hallucinated spiders that looked like bubbles crawling all over the walls. When I asked a nurse to remove them, she kindly said, "Of course." It was the medication, but I did not know that then.

The nightmares were worse. They felt real. In them, nurses I trusted turned on me. When I woke up, the fear stayed. The next time one of those nurses walked in, I was scared of her, even though she was one of the people fighting hardest for me. I hated that feeling. When you are that sick and weak, your mind can play tricks on you.

Maureen saw it from the chair. She would find me with my eyes closed or staring out the window. Sometimes she caught me talking to the air as if someone were there. She understood that much of it was the medications and ICU delirium.

The weight you do not see

After enough weeks and months, I realized the real battle was not in my lungs anymore. It was in my mind. Each day felt the same. Repetitive, draining, and unending. I started feeling depressed. I stopped watching TV for three months and just lay in bed asking, "Why me?"

The mental struggle was just as real and intense as the physical one. Nearly four years later, I still remember those dreams. I am in a better place now, which lets me write about them without anxiety.

Waking up with new lungs

After my double lung transplant at Northwestern Medicine on January 31, 2022, I woke up again. I could hear Maureen and our daughter Sydney talking nearby. I turned my head and opened my eyes. Maureen said, "There he is," and they rushed to the bed.

My head felt lighter, as if a heavy weight had finally lifted. After all that time surrounded by machines and noise, everything went silent. I turned my head in every direction just because I could. I kept thinking, was this all a dream?

I felt happy and scared at the same time. My first thought was whether I would ever walk again.

Two weeks later, at Shirley Ryan AbilityLab, I saw myself in a mirror for the first time. I cried. I had lost 53 pounds. My eyes were sunken, my arms were like sticks, and my voice was a whisper.

What I want families to know

Even when I was lost in my own head, I could still feel it when Maureen leaned down to kiss me. Her presence, her touch, and her calm made me feel at home. I was not alone. Your loved one may not recognize you at first. They may say strange things. Keep showing up anyway.

Keep reading

Can You Survive Months on ECMO? My 241 Days on ECMO

Relearning to Walk After the ICU

What to Expect After a Double Lung Transplant: The First Year

When Your Spouse Is on ECMO: A Caregiver's Story

Read the full story

A Life Returned: How Love, Loss, and a Stranger's Gift Gave Me a Second Chance, by Nicholas P. Dodge and Maureen G. Dodge, is the full account of my 241 days on ECMO, my double lung transplant, and the long road home. Maureen wrote it with me from the chair beside my bed.

Available on Amazon in paperback and eBook.