Relearning to Walk After the ICU

By Nicholas P. Dodge

After 241 days on ECMO and a double lung transplant, I could not stand on my own. I could not sit up without help. This is what it took to walk again.

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.

What months in bed did to my body

For ten months, except for the last few weeks, I was bedridden. I developed drop foot on my left side. Drop foot happens when certain foot muscles are weakened or paralyzed.

At Advocate Christ Medical Center, the team pushed me to stand in a Kreg bed. By then, even being upright was difficult. It let me start putting weight on my legs again. Videos from my physical therapy at Christ Medical Center are on my Video Journey page. Before my transplant, my hands were so shaky and weak that Maureen had to feed me.

Six days after the transplant, I was down to 158 pounds. I had lost 53 pounds in all. Most of my muscle mass was gone.

"They could help me walk again"

Days after my surgery, two representatives from Shirley Ryan AbilityLab came to Northwestern Medicine. They ran tests to see if they could rehabilitate my legs. Despite the drop foot, they agreed to take me on. I almost cried when they said they could help me walk again.

On February 15, 2022, I was transferred. Shirley Ryan AbilityLab is one block from Northwestern. The transfer still took over an hour.

The first look in the mirror

I will never forget seeing myself in a mirror for the first time. I cried. I looked like a skeleton. My eyes were sunken, my arms were like sticks, and all the muscle was gone. My voice was a whisper.

The next 30 days would be the hardest. Getting out of bed was a major challenge. Standing with help from two nurses was tough. I felt like a small child, needing help to stand, walk, eat, and get dressed. In my mind I kept saying, "You can do it." My body said no.

What rehab actually looked like

Every night before bed, the staff gave me a schedule for the next day. There were no days off except Sundays. Most days mixed physical therapy and occupational therapy. My physical therapist was Devon Butts. My occupational therapist was Samantha Conrad.

The first two weeks were brutal. I would finish four therapy sessions in a day and collapse into bed. Even the thought of getting into the wheelchair made me break out in a sweat, because I knew what came next.

One nurse, smaller than my 24 year old daughter, helped me to my feet. The look on my face must have said it all, because she smiled and said, "It's not about how big I am. It's about how I move the weight." She was right. She used a belt around my waist to keep me balanced. When I started to fall, she grabbed the belt and my shorts at the same time. That led to more than a few wedgies. Brutal.

One day, I was shuffling around the track in a walker, with Devon holding the strap around me. For the first time, I thought I was going to lose it and burst into tears. Devon sensed it. She turned to me and said I would be okay and to keep going. I did not cry. I kept pushing.

One step at a time, literally

When I started, I could not make it up a single step without Devon lifting me from behind. Every day, she made me climb the same staircase. On March 15, 2022, graduation day, I made it to the top with her help.

Sam taught me how to dress, groom myself, shower, and eventually make my own coffee. We practiced for weeks, letting go of the walker to reach the shelves and fill the pot. Just before graduation, I made a pot of coffee for both of us. She took off her mask to take a sip. It was the first time in all my hospital stays that I saw a caregiver without a mask.

Around week two, something shifted. I had a little energy left after my sessions. A song came into my head: Feeling Stronger Every Day by Chicago. I listened to it every day until I came home.

Walking at home

I went home on March 16, 2022, in a wheelchair. I did outpatient therapy at Shirley Ryan AbilityLab three days a week, three hours a day, until August. I fell in the foyer, then again in the family room. It was humbling to have my daughters pick me up after always being the one to lift them.

Our daughter Isabella pushed me to walk our staircases, 19 steps each. The burning in my thighs is something I will never forget. But at least I was not falling anymore.

Over the following months, I went from a wheelchair to a walker to a cane, and eventually walked on my own. I still remember the first time I circled the neighborhood. In January 2023, I drove again. By March 2023, steep inclines still required a cane.

Maureen remembers it this way:

"I'll never forget the triumphant look on his face when I walked in and saw him standing up from the wheelchair without help. That's a real warrior."

What I learned

You truly do not appreciate your ability to walk until it is taken away. I have a new respect for anyone who uses a wheelchair, a walker, or a cane. Recovery is not passive. It demands all of you, physically, mentally, and emotionally.

Keep reading

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

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

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.