In The Spotlight with Josh Stegeman
By Andrea Eisenman and Jeanie Hanley
Please welcome Josh Stegeman who lives in St. Louis, MO. He is 43 years old, has been married for 20 years, and has two children—an 11-year-old son and a nine-year-old daughter. He is a recipient of two bilateral lung transplants even though he was hesitant about having his first one. While currently doing photopheresis due to complications of chronic rejection, he is a partner in a law firm practicing worker’s compensation. If nothing else, you will see that Josh is motivated and certainly a doer. He doesn’t let much get him down or let things deter him from doing what he can. Please welcome our newest star, spotlight please!
How did you meet your wife?
We met at George Engelmann Science & Math Institute, which was a four-week summer program held at University of Missouri-St. Louis in the summer of our junior year in high school. We attended separate high schools but formed a bond at camp. Before she departed for college, we spoke about whether we would continue to date and even discussed possibly marrying each other someday. We got engaged four years later.
What do you do now?
I’m a partner at a law firm. I chose this intentionally because of my cystic fibrosis. I did not feel comfortable starting my own practice, especially if I became sick and could not fulfill my responsibilities to my clients. Also, it guaranteed me health insurance which is gold for a CF patient.
I did not tell either of my employers about my cystic fibrosis at first. After about six months, once I had established my reputation and abilities as an attorney, I revealed more of my health background. Words cannot describe the honor, respect, and loyalty my firm has shown me with regards to my health issues—including unwavering supporting through a transplant. With my recent chronic rejection in January 2020, my firm has accommodated me, allowing me to work despite reduced capacity.
How did you pick your career?
Initially, I attended college to prepare for a career in medicine. I was a double major in chemistry and biology. I worked in a lab during my first three years in college and determined that I was not enjoying my studies. In the second semester of my junior year, I made a bold decision to switch majors to political science with minors in biology, chemistry, and math. I then decided that I would try law school since I enjoyed politics.
Were there concerns about going to law school and getting a degree while having CF?
I had no concerns about attending law school even though I had CF. That was a delusion. The reality is that I was scared how cystic fibrosis would affect the rest of my life. Rather than confront that fear and deal with it, I denied it and ignored the limitations and impact it would have on me and those who loved me. I was always trying to normalize myself rather than accepting my CF and then excelling despite it. This wasn’t a healthy approach and it has been something that I have had to change since I’m dealing with my impending mortality.
I did know law school would be less burdensome than attending medical school. In the past I was able to handle being sick while attending school, adapting and persevering with a little help from my family and friends. What I didn’t expect was that my health would begin to decline more rapidly than I anticipated. I attended law school full-time my first year, but had to cut down on hours as my health deteriorated. I also started using oxygen at the suggestion and encouragement of my loving wife. My health really plummeted and I was admitted to the ICU. Fortunately, I was listed for a lung transplant and got the call for my first set of lungs two weeks after graduation.
What kind of law do you practice and how did you decide which area to focus on?
I practice workers’ compensation defense which involves litigation (trial work). When I went to law school, I knew that I wanted to be a trial lawyer. After my transplant, I was able to follow my dream and began as a civil defense litigator, but after we adopted our children, I wanted to still litigate, but in a narrower area of law, so I chose workers’ compensation.
How did you decide to have your first transplant? And your second?
My decision to get a transplant was complicated by my fear and denial of death. This fear has haunted me for my entire life. I was placed on the waiting list for new lungs; however, when I got the call I declined because I was too healthy. My CF nurse, between two hospital stays for hemoptysis, said to me that even if I didn’t want to live for myself, I made an impact on those around me. I changed my mind after hearing that perspective and agreed to being listed for transplant.
Unfortunately, chronic rejection in the form of bronchiolitis obliterans (BO) compromised my first lungs. I went from approximately 80% lung function to 20% lung function in six months. This happened eight years after my transplant. I underwent photopheresis for almost three years before my second set of lungs.
Currently, I am five years post-transplant for my second transplant but in chronic rejection again. In January 2020, my health substantially worsened due to both fungal and bacterial infections, as well as CMV reactivation. By the time we could address them, chronic rejection was an issue. I went from 70% lung function to 30% lung function in three months. I am currently undergoing weekly photopheresis treatments. I am on oxygen 24 hours a day and only have 15% lung function left at this time. Despite the blessings of these two transplants, I still have a fear of dying, which substantially impacted how I handled COVID-19 and my most recent chronic rejection.
Are you pursuing a third?
At this time, a third transplant is not an option for me. It would require me to move somewhere else while waiting for the transplant. Also, there is no guarantee that it will be successful or that I will even be listed. Plus, I have been blessed with 16 extra years now. All of my family lives near me. If I were to die, I would prefer that they be nearby—they are the true reason that I’m still here today.
How did you come to have two children?
When my wife was teaching as a high school choir director, one of her students was pregnant and wanted to give the child up for adoption. However, the student wanted an open adoption where she knew the family. She thought of my wife because she had seen my wife’s nurturing, compassionate, and kind soul in action. She approached my wife and asked five years post-transplant. Ultimately, we decided God was blessing us with this opportunity.
Because we both have siblings, we explored privately adopting another child a year later. God was working his way into our life again—our daughter’s birth mother pursued adoption after seeing our son’s birth mother choose that route. We invited her parents over to discuss their questions about the adoption process and they discovered that we were interested in adopting again. When she learned of our desire to adopt again, she asked us if we would adopt her daughter. The beauty of all of this is that we have four birth families with whom we have open relationships, and they all accept each other as family
Who or what inspires you?
She probably won’t believe this, but my wife inspires me the most. She is pure, confident, and convicted in her beliefs. She married me knowing that this life would be hard because of my disease, but she accepted me despite the pain and suffering that we have endured since our relationship began. She has not only kept me alive but showed compassion and kindness to me even when I have not reflected the same. I am also inspired by God’s Word in the Bible because if you allow it to guide your actions you will become the person God made you to be.
How has the COVID-19 pandemic affected you?
COVID-19 caused me to contradict my motto and I maintained living a life in fear. It bred fear especially because of my health decline which caused me to be very vulnerable to COVID-19. My fear was so unhealthy that it significantly damaged my relationship with my kids and wife. They were imprisoned by my fear for 18 months because I wanted to shelter in a bubble. I was so paranoid that the kids wore N99 masks in the summer to play with their friends and my wife had to take walks outside in our neighborhood wearing an N99 mask. After assistance from my loving wife and counselor, I have reclaimed my motto—"fear does not stop death; it stops life” (Vi Keeland)—about living life and not living in fear. I surmise that without that new perspective that I likely would already be dead.