Story by April Duncan.
Thirteen years ago, I lost my first husband to cystic fibrosis. I knew he had the disease when I met him, but that didn’t matter to me. I fell in love with a person, and he was my person. The oxygen tank he carried around during our first few months never bothered me. I was in love. Just four months into dating, he received a double lung transplant.
I remember him saying to me if I wanted to leave, he wouldn’t hold it against me. People with cystic fibrosis at the time of Josh’s death, lived to their early twenties. Leaving never crossed my mind, but now as an adult I know why he said it to me. I was 18 when I met him, fresh out of high school and beginning college. But I stayed. I stayed through the double lung transplant, his recovery from such a major surgery, and the complications that came afterwards. He was embarrassed by the colostomy bag, understandably so. He had to wear it for months following the transplant. But even that didn’t scare me. Looking back, it made me realize how strong a man he was. This man had his lungs ripped out, replaced, and a month later had ten inches of his intestines removed! Months passed and he was in acute rejection. He was already on anti-rejection medications, but rejection can still occur. The body sees it as a foreign tissue and attacks. Even with a transplant, cystic fibrosis is always present. It is a genetic disease. A transplant gives the person fresh Lungs, but the disease scars them until they again resemble Smoker’s Lung. Cystic Fibrosis will always be present.
We continued to have a typical young relationship over the next two and a half years. I say young, because we’d bicker over just about anything and everything! He had a strong presence about him. And even still, I adored him. He was the editor in chief at our community college and I was a writer/photographer under him. We visited family frequently, traveled together with family to Mexico, and he went to New York City with our newspaper crew. He wanted nothing more than to keep living. He once told me, he was living for me. And frankly, I was living for him. He endured Intravenous immunoglobulin (IVIG) treatments used to normalize a compromised immune system, long hospital stays, 30 plus pills he had to take daily, the High Frequency Chest Wall Oscillation aka ‘vest treatments’ used to dislodge mucus from the bronchial walls, the nebulizers, the chronic coughing. None of that mattered! I saw a man, a brilliant man who just got the short end of the stick when it came to health.
The day he asked me to marry him, was a day I knew deep down I didn’t have long to be with him. He was on oxygen 24/7 and in a motorized wheelchair because walking took a huge toll on his lungs. His doctors said a second transplant may not be an option so again, he told me I could leave. At that point, he was in chronic rejection. Hospital stays were frequent and long. But never did it cross my mind to leave so I would answer him with a kiss and “I love you.”
Things were looking pretty grim in late April. We were in the emergency room at Barnes-Jewish Hospital of Saint Louis. He looked directly into my eyes and said, “let’s get married.” I told him okay. We looked into Once Upon a Wedding, which assists those with chronic illnesses. But by the end of the day, we decided to get married at the courthouse due to how fast his disease was taking a toll on him. We were number 40 something at the courthouse, and we expressed to all the couples in front of us if it would be possible to skip ahead since the oxygen tank carries only so much and we only had a small battery in his motorized wheelchair. Everyone agreed and we moved from 40 to number two. I was happy. Really happy.
Exactly one week after we were wed, I received a call that he was going to the hospital and that I needed to come now! When I got there, he could barely breathe and was only able to mouth the words “I love you” before the elevator doors closed and he was taken to the ICU. That was the last time I saw him awake. He was in respiratory distress and had to be ventilated and placed in a medically induced coma. The days in the ICU were long and honestly hard for me to remember. The support we received was amazing. His mom and I were everything to him. As was the rest of his family. Days after we were married, he posted on Facebook how grateful he was to have me and his mom in his life. After two and half weeks, his pulmonary (lung) doctor pulled us aside and said that we need to think about the end. We decided to take him off life support on June 3, 2011, giving family and friends time to say their goodbyes. I hadn’t seen my husband awake in over three weeks since we were married. That day will forever be the worst day of my life. I will never forget how I screamed “NO!” over and over again when they called the time of death. How my mom cried beside me when it was her time to see him after he passed. Knowing he was surrounded by family who loved and adored him, gives me peace. He was a 24-year-old man who loved everyone and was loved by so many.
Even with such tragedy comes a continuation of life. I told him how much I wanted to be a journalist, even with as bad as I was with my interviews! About two years after he passed, I got on with my life. I remarried, divorced, and went into the medical field which never crossed my mind, until after he passed. I started off as a pharmacy technician, then went on to be a pediatric patient care technician. I spent some time on the pulmonary floor and now I am a pediatric certified medical assistant in specialty medicine. In 2020, I started volunteering with the Cystic Fibrosis Foundation – Gateway Chapter and I am so happy that I can make a difference in honor of his memory.
May is Cystic Fibrosis awareness month, but our awareness doesn’t stop at the end of the month. If you want to get involved, message me. But also consider helping us in finding a cure by donating to this great organization so that one day we can make CF stand for Cure Found.
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