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

By Nicholas P. Dodge

If your loved one has been told they need a lung transplant and the hospitals are saying no, I know that feeling. I spent 241 days on ECMO. Partway through, five transplant centers declined my case. I still received a double lung transplant. This is how it happened.

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.

When transplant became the only option

By October 2021, I had been on ECMO for four months. My medical team at Advocate Christ Medical Center reached a sobering conclusion. ECMO had reached its limits. The only remaining option was a lung transplant.

Maureen walked into my room that day and found me upset and depressed. ECMO was meant to be a short term solution, but I had been on it much longer than anyone expected, and my lungs were not improving. We were both scared. This felt like our last option, and it had to succeed.

It was the only time real fear took hold of me. Could my body handle the surgery? Would there even be a donor match in time?

Five doors closed

The hospital began requesting transfers for transplant evaluations. During COVID, hospitals across Chicago were overwhelmed. Five transplant centers in the Chicago area declined my case because of capacity limits and the high risk nature of my condition. My team even contacted out of state hospitals with transplant teams. There was no availability.

Each rejection felt like a door slamming shut. Then COVID restrictions tightened again. After Christmas in December 2021, the hospital banned visitors. Maureen and I could only talk by phone and FaceTime. We missed New Year's Eve together.

The people who kept searching

My medical team never stopped. Dr. Devang Joshi was one of the surgeons who told me a double lung transplant was my only option. I later learned that he and the team were actively reaching out to other hospitals to secure a bed and a donor for me.

One evening, a doctor said something I needed to hear: "We're not giving up on you. Your story isn't over." Those words reignited my will to keep fighting.

While we waited, I kept working. The Kreg bed let me stand and start putting weight on my legs again. It was not easy, but it helped prepare my body for the transplant.

The call

On January 19, 2022, at about 8:30 in the morning, a nurse came into my room. Northwestern Medicine had accepted my case and had a bed ready.

After eight months at Christ Medical Center, I thought I would feel nothing but relief. I felt everything at once. When they wheeled me out, I could hear the staff clapping and cheering, but I was strapped in too tightly to wave goodbye. The ambulance drove the 20 miles from Oak Lawn to downtown Chicago without stopping once.

I was wheeled into room 975 on the 9th floor, with the Chicago skyline in the window. Maureen was allowed to visit again.

From testing to transplant in twelve days

Over the next three days, I went through intensive testing to confirm my body could survive a double lung transplant. The team kept asking me the same question: "Are you sure you want to do this?" They meant it. I had to promise to commit to rehab, take my antirejection medication every day, follow strict rules, and never give up. They called it a social contract.

On January 28, 2022, I was placed on the national lung donor waitlist with a score of 94 out of 100. That meant surgery was urgently needed.

Two days later, on the evening of January 30, the lung team told us they had found a match. On January 31, 2022, I received a double lung transplant. My donor was a sixteen year old named Tyler.

What I would tell your family

I cannot tell you what will happen in your case. I can tell you that a no from five hospitals was not the end of my story. If you are waiting right now, know this: there are people working for you that you will never see. Some of them will be in the operating room. One of them is a family you may never meet.

Keep reading

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

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

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.