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

By Nicholas P. Dodge

If someone you love was just placed on ECMO, you may have heard that it is meant for days or a few weeks. I was on ECMO for 241 days. I survived it, received a double lung transplant, and I am writing this more than four and a half years later.

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.

How I ended up on ECMO

On April 23, 2021, I tested positive for COVID at a walk in clinic. Three days later, at 4 a.m., I could barely breathe. Maureen drove me to the emergency room at Good Shepherd Hospital in Barrington, Illinois. My oxygen level was 69%. They told me I was not going home.

My lungs kept failing. I spent days lying face down. On May 17, 2021, I was put on a ventilator. My oxygen levels stayed unstable, even at the highest setting. The doctors told Maureen there was nothing more they could do and advised her to get ready. She refused to accept that. She asked the nurses to contact other hospitals.

On the morning of June 4, 2021, Maureen got a call that my oxygen was dangerously low. When she arrived, a perfusionist and a doctor were in the room. They told her they had another way for me to breathe. It was called ECMO. A surgeon was available to insert the cannula, and I was transferred that same day to Advocate Christ Medical Center in Oak Lawn. Years later, I learned that Dr. Deborah Tabachnick from Rush University Medical Center played a critical role in that procedure.

What ECMO did for me

ECMO pulled my blood out of my body, added oxygen, removed carbon dioxide, and sent it back, because my lungs could not do the job anymore. A large tube was sutured into my neck.

There were more than a few times I stopped breathing. Just stopped. The ECMO never failed. It was doing the breathing for me.

A team of perfusionists ran my machine around the clock. Not once, during the entire time I was on life support, did a single issue occur with it. I believe that was because of their meticulous care. They were the ones keeping me alive.

How rare is a stay that long?

ECMO is typically designed to support someone for a few days or, at most, a few weeks. Andy Jaley, one of the perfusionists who cared for me, wrote this in the foreword to my book:

"Few remain on it for long, but Nick stayed on it for over 7 months. That is not a typo. It is a medical outlier, nearly unheard of in our field."

What those months were actually like

For about twenty days, I was on both the ventilator and ECMO, unconscious. I could not wake up until they removed the breathing tube, and they had to be sure I could survive on ECMO alone first. The ventilator came out on June 24, 2021. For months after that, ECMO alone kept me alive.

Most mornings started at 4 a.m. with a chest X ray. At 6 a.m., I was moved into a chair, where I sat for six hours because sitting up was better than lying in bed. Later, I negotiated to stand for hours in a Kreg bed instead. It helped prepare my body for the transplant.

I was always cold. I slept under a seven pound weighted blanket. I had vivid hallucinations and nightmares that felt real. I went months without eating and had a feeding tube through my nose. For three months, I refused to turn on the TV. On my 55th birthday, August 13, 2021, I went outside for the first time since April. It lasted about fifteen minutes before I got sick.

In November 2021, I went back on the ventilator. They moved the ECMO to the other side of my neck because it started to bleed.

When ECMO stops being the answer

By October 2021, my medical team reached a sobering conclusion. ECMO had reached its limits. My lungs were not improving. The only remaining option was a double lung transplant.

Five transplant centers in the Chicago area declined my case. On January 19, 2022, Northwestern Medicine accepted me. On January 31, 2022, I received new lungs. On February 2, the ventilator came out and ECMO came off. For the first time since May 2021, I was breathing on my own.

What got me through

I never once thought I was going to die. Not once. The only time real fear took hold of me was when they told me I needed a double lung transplant.

It was not heroic. It was stubbornness. It was deciding, again and again, that giving up was not an option. For me, mindset, family, faith, and the people around me made survival possible.

Maureen was there almost every day. The one way drive took an hour or more. In eleven months, she put 12,000 miles on the car. My brother John came after his graveyard shift with coffee and breakfast. My kids and friends kept showing up. Every night, Maureen and I said The Our Father together.

One of my favorite quotes is from Winston Churchill: "If you're going through hell, keep going." I think about it almost every day.

If someone you love is on ECMO right now

I cannot tell you how your story will go. I can tell you that the perfusionists, nurses, and doctors who ran my machine never gave up on me, and that I could still feel it when Maureen leaned down to kiss me, even when I was lost in my own head. Keep showing up. It matters more than you know.

Keep reading

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

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

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.