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

By Nicholas P. Dodge

I received a double lung transplant at Northwestern Medicine on January 31, 2022, after 241 days on ECMO. This is what my first year looked like. Every recovery is different, but I hope knowing mine helps you picture what is ahead.

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.

The first days: the ICU

The surgery took eight hours. I woke up with 50 staples in my chest. Two days later, on February 2, 2022, the ventilator came out and ECMO came off. For the first time since May 2021, I was breathing on my own. I wrote about the surgery itself on my Transplant Day page.

I had an epidural for pain for a few days. The doctors did not want me to get weaker, so they had me moving right away. On February 6, I was down to 158 pounds and could not hold myself upright in a chair.

Weeks two through six: inpatient rehab

Two weeks after the transplant, on February 15, I was transferred to Shirley Ryan AbilityLab in Chicago. I had lost 53 pounds. I could not walk without a walker or wheelchair. I had to relearn how to stand, walk, eat, and get dressed.

Therapy ran every day except Sundays, with physical therapy and occupational therapy. After 30 days, I could stand without falling, dress myself with adaptive tools, cut my food, and brush my teeth.

Going home

On March 16, 2022, I went home after eleven months in the hospital. Before we left, we went back to Northwestern, where they sat us down to go over each medication and why it mattered. We also met with a nutritionist, because certain foods and activities had to be avoided.

Home looked different. My family turned my office into a bedroom with a twin bed on the first floor, because I could not climb the stairs yet. We installed handrails and a temporary ramp for my wheelchair. Maureen learned from my physical therapist how to lift me if I fell, and she taught our daughters. That helped, because I did fall. Once in the foyer, then again in the family room.

The routine that rebuilt me

From March 18 to August 12, 2022, I did outpatient rehab at Shirley Ryan AbilityLab in Arlington Heights, three days a week, three hours a day. I went from a wheelchair to a walker to a cane, and eventually walked on my own. Our daughter Isabella pushed me to climb our staircase, 19 steps. I will never forget the burning in my thighs.

I tracked my oxygen and temperature using apps like MyChart. I also worked on memory challenges and learned to take notes quickly during conversations to help me remember.

The rules you live by

After a transplant, you follow one rule: never miss your medications. Those antirejection drugs are the lifeline that sustains you.

My transplant team's guidelines included no smoking, no processed meats, nothing raw like sushi, and no alcohol. I had to avoid overly strenuous activity. I cannot even put my head underwater in my swimming pool, because I might catch an infection.

At first, those sacrifices felt overwhelming. They were insignificant compared to the gift I received.

Milestones in that first year

• May 6, 2022: My first time leaving the house, with friends.

• June 26, 2022: Still using a walker, but gaining confidence and putting weight back on.

• August 13, 2022: My 56th birthday. A year earlier, I was on life support.

• October 2022: I returned to work.

• January 2023: I started driving again.

By March 2023, I had regained much of the weight I lost, reaching 198 pounds. Steep inclines still required a cane.

What no one tells you

When I first came home, the relief was almost as intense as the fear had been. But I was not returning to the life I had before. That life was gone. It feels strange to sit in your favorite chair and not recognize how it fits your body. My old lungs were gone. I could not cough the same. I needed help with almost everything, and as hard as that was, I had to accept it.

Recovery was not a straight path. Some days felt like progress. Others felt like I had slipped backward. Maureen called it "the new normal." I have never been sure that is the right phrase. What I have now is something different. Slower, softer, more deliberate.

People ask if it feels weird to have someone else's lungs. It does not. It is who I am now. I think about my donor, Tyler, every day.

Where I am now

I am more than four and a half years out. I see my transplant team every quarter. I never miss my antirejection medications. Since the transplant, I stood beside my son as best man at his wedding, officiated my niece's wedding, and Maureen and I celebrated our 40th anniversary together.

Keep reading

Relearning to Walk After the ICU

Turned Down by Five Transplant Centers: How I Still Got New Lungs

Tyler, my donor

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.