Lung Transplant Saves Chicago Woman From Lung Disease ‘Nightmare’

After years of battling lung disease and struggling to breathe, Denise Diaz is now able to do what was not possible before – go back to work, walk several miles and even travel overseas – thanks to a double lung transplant. Now, Diaz will participate in the American Lung Association’s LUNG FORCE Walk to support other people waiting for organ transplants or those who are in recovery. Below, Diaz shares her full story in her own words:

It started with planning a wedding. My fingers felt stiff and sore, swollen and red. I had my engagement ring resized so that Scott could slip it on my finger on October 26, 1996, our wedding day in Seattle.

Three weeks post-honeymoon, I got my diagnosis. Scleroderma, 710.1, diffuse. The meaning of the diagnosis was devastating – lifelong disease management in a life that would perhaps last another 7 years or so. I would be lucky to turn 40.

My doctor measured my lung function and noted in his assessment that a stem-cell transplant may be in my future.

Years later, my disease progression seemed to slow to a crawl. Yes, there were circulatory problems in my extremities, but everything was manageable. Life went on.

Then, without warning and without a notable cause, my lungs got worse. My pulmonologist had told me that “endgame” was a lung transplant, casually, like saying that my eyes will need glasses as I age. Surely I would die of something else before that. I was 50.

But I was feeling worse, and rapidly. I began to notice that my walk up the “L” stairs was so taxing that I would sit down, seeing stars and feeling the panic rise until my breathing slowed and heart stopped pounding. Then I would stand and go on with my commute.

After a business trip to Miami where I lost control of my bladder in the lobby of the Fontainebleau just trying to walk to a meeting I was leading, I went home and tried to recover. The bad cold I had was not going away and I was so weak that getting dressed made me feel like I had run 5 miles.

“Scott, I need to go to the ER,” I said, and off we went. I knew I was going to be admitted. I even packed a bag.

There at Northwestern, I was diagnosed with pulmonary hypertension, described to me as a “deadly, progressive disease,” that would kill me in 1-2 years if I did nothing.

Then, my breathing got worse. After a year of oxygen, I felt another decline. This time my anxiety took the wheel and started driving the car, fast. My lungs were getting worse.

The next time I had a rheumatologist appointment, I burst into tears when he walked in. I suggested they hospitalize me to find out why I continue to decline. They did, and after more tests I progressed through three drugs that sadly, did not work. That endgame scenario my doctor had so offhandedly described had arrived.

I began to work towards getting a transplant to save my life and possibly buy me a few more years with my family. The docs call it “trading one set of issues for another.” This meant, for me, trading one year to live for five. It was less of a choice than it was an imperative.

The wait was nine days, then the surgery commenced. I did well in recovery for the first ten days, then I had a stroke, and an episode called Takotsubo cardiomyopathy (broken-heart syndrome). It’s likely that my scleroderma, with the circulation damage it had caused over the years, drove the complications.

That bought me three months of recovery in the hospital, where I struggled to walk, talk, and was unable to eat because I will still on a feeding tube. But Scott came every day, and friends from the west coast flew out to help care for me at the hospital and at home. The nausea and fatigue were debilitating.

Recovery at home brought new challenges of post-hospitalization. I was still incredibly nauseated and incontinent. I was in physical and occupational therapy three days a week for three hours each session. I cancelled frequently, so exhausted and so sore that I could barely stand or walk.

But slowly, my health improved. The feeding tube was removed and I had my first liquid - lemonade, and my first food - an orange. Now I can walk several miles, I went back to work, and I have traveled domestically and overseas. The nightmare is essentially over.

I am so very grateful to my donor’s family, who had to make a dreadful decision to end their loved one’s life. I am trying to identify this family, but have had no luck yet. They saved my life and I hope they want to meet me and hear their loved one’s lungs breathing inside of me.

My gratitude also extends to my friends and family, who pulled me through it. I always tell these people: I have no way to thank you except to keep fighting. And when I feel like giving up, I remember my promise.

Diaz will participate in LUNG FORCE Walk on Sunday, August 12 at 10 a.m. The event kicks off at the Stadium Green at Soldier Field, and includes a three-mile walk along Lake Michigan, as well as a one-mile option for those with lung disease. It is free to register and participate, but fundraising is encouraged. More information and registration is available at LUNGFORCEWalkChicago.org.

To learn more about Denise’s story, read her blog at www.breathedeep.wordpress.com.

Photo: (Left) Diaz with 12-year old son, Brooks. (Right) Diaz in Tuscany two years post-transplant.