Linda’s Story

In November 2009, I was an active 59-year old wife, mother, step-mother, and grandmother, national trainer, attorney and litigator, when I heard the words “You have moderate to severe emphysema.” Those six words changed my life. Before then, I thought of myself as a person in excellent health who had gotten a little older and a little out of shape. After struggling to keep up while on a campus tour with my daughter, I asked for testing of my lung function. The results were not good. I had smoked in college and a year or two after, quitting by my mid-20s, but otherwise lived a healthy life. How could this be?

I learned that emphysema (COPD) is the fourth-leading cause of death in the United States. I was determined to live a long life and remain as active as I could for as long as I could. I immediately began to take the medicines and inhalers prescribed, participate in a pulmonary rehabilitation class to increase my stamina and functioning, and learn about the disease and how to manage it.

The first two years went pretty smoothly. I improved my stamina and maintained good oxygen saturation levels when exercising without supplemental oxygen. Then things took a turn. In early 2012, I was struggling more to breathe. Then, while on a trip to Chicago with my husband to see a play, I had my first exacerbation. I thought I was going to die. I couldn’t get air in or out. I ended up in the ICU at a Chicago hospital, then I was transferred to another hospital. From that point on, I got sicker, ending up in the hospital with more exacerbations every few months. I also began using supplemental oxygen. At first, I only needed it at night and when working out. Then, I needed it when walking or moving. Eventually, I was on four or more liters of oxygen 24/7.

My world was getting smaller. I tried to remain as active as I could be, including working out. However, there were fewer “good” days. Most days, I struggled to walk from one room to another. The things I could do became more limited, even with the tremendous help and support of my amazing husband, family, friends and co-workers. It often took me an hour and a half to shower and dress in the morning because I had to rest frequently to catch my breath. Walking the few steps to our garage felt like I was climbing Mt. Everest.

In June 2014, I stopped working. I just couldn’t do it anymore. I then was evaluated by the transplant program to determine whether I would be a candidate for a lung transplant, the only treatment option left. To qualify, one must be sick enough to need the surgery (die without it) and healthy enough to survive it. It’s a narrow window. At the end of July, I learned that I qualified to be placed on the transplant list. It was a big decision, but I decided I was ready. I had the wonderful and complete support of my husband and family. They knew I didn’t want to continue to struggle every day any longer.

On August 11, twelve days after I was listed, I received a call, and heard “We have lungs for you.” I couldn’t believe it. Yet, I was as calm as I’ve ever been. I had total confidence in my medical team, I had the abiding love and support of my family, and I firmly believed in my own ability to make it.

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When I awoke after surgery, my surgeon told me, “You have beautiful lungs!” It felt that way to me. I could breathe – really breathe – again! I walked around the nurses’ station twice without supplemental oxygen two days after surgery. I left the hospital after nine days. I got stronger each week. Two months after my transplant, I walked from our house to a Badger football game, the first in several years. A year after my transplant, I was able to carry my two-year old granddaughter on my back as we came home from the park. I was healthy and strong again. Unbelievable!

Ten months after my surgery, I met my donor’s family. I learned about my beautiful, generous, loving donor: a mother, daughter, and wife. When we met, her mother said, “I just want to feel you breathe.” We all held each other and cried. It is almost impossible to imagine that one family’s grief and profound loss can co-exist with another family’s joy and profound gain. But it can. One family’s hope that their loved one’s gift will give life to another leads to another families deep gratitude for the gift of life and chance to live again. It was an amazing and moving experience. I am so fortunate to have met them so we all could thank them in person. We remain in contact, a continued gift for which I am eternally grateful.

One of my goals before surgery was to be able to dance again. As I was being wheeled into surgery, my son played “Dancing Queen” by ABBA. Everyone smiled. Then, one year after my transplant, on a beautiful summer night, surrounded by my family and friends, I sang and danced to “Dancing Queen” on the rooftop of the Monona Terrace. I had the time of my life!