Stegeman Slays CF with Transplant

Joshua Stegeman
Second Wind St. Louis
Board Member
January, 2006

God blessed me with a wonderful and fulfilling life before my transplant, especially considering my parents were told I wouldn’t live past the age of five. I am currently 27 years old and received my bi-lateral lung transplant on June 2, 2005. I consider that date just as important as my birthday now; it gave me new life.

I was diagnosed with cystic fibrosis at the age of two. For those who are unfamiliar, cystic fibrosis is a genetic respiratory disease that affects not only the lungs, but the entire body, and the fatalistic symptom of cystic fibrosis is its effect on the lungs. The severity of symptoms ranges along a wide spectrum because of myriad mutations of the gene. I carry the most common gene mutation, which results in fairly severe symptoms. I was fortunate to avoid the hospital during my childhood by using home health care. My parents played a vital role in maintaining my health and medical care, including having to fight many battles for better treatment of my disease. I was always very active; I played sports, engaged in extra-curricular activities, and even began working at the age of 14. I continued to work until October 2002, when I became too ill to continue working and attending school at the same time.

Despite the presence of my disease, I have always sought to be as normal as possible. I was fortunate enough to find the love of my life, Amanda, in my final year of high school. We continued our relationship through our undergraduate careers and were happily married on June 16, 2001, despite a serious hospitalization related to my cystic fibrosis a week prior. Amanda provides undying support and concern for my health and treatment. Most of all she provides an outlet of communication to channel my thoughts and feelings, and I cherish that most of all.

When I ceased working in 2002, I was in my second year of law school at Saint Louis University. It was at this time that I began to use portable oxygen and a concentrator at home to treat my pulmonary hypertension. It was an adjustment to carry oxygen with me, but I soon acclimated, as well as those around me. I actually entered law school as a full- time day student while working in the evenings; however, I was hospitalized several times during my first two years; therefore, I became a part-time student for the remainder of my schooling. I finished my legal studies in December 2004, and began working for a circuit court judge in the City of St. Louis. Unfortunately, I became severely ill in February 2005. It was at this time that I reconsidered the possibility of a lung transplant. Initially, I had been listed for transplant in October 2001. When I accumulated the two years of waiting time, I deactivated in November 2003, because I felt a transplant was not necessary. Frankly, I was not certain that I wanted a transplant because of my philosophy regarding the natural laws of life. It was the words of my cystic fibrosis nurse that led me to reevaluate my beliefs and realize that a transplant offered me the opportunity to give something back to the world.

When I became ill in February 2005, I had to quit working and began using oxygen twenty-four hours a day because my lung function fell to around ten percent. After two hospitalizations, the last one, life threatening, I realized that my condition was not going to improve. Recalling my refined view of a transplant, I decided to at least reactivate, and then make the decision whether to receive the transplant. During the period before my reactivation and the transplant, I regained some lung function. My intention was to use this time to study to take the bar examination in July 2005, and also do pulmonary rehabilitation at Barnes. I was reactivated as a transplant candidate on May 18, 2005. I was blessed with another miracle when I received the phone call on June 2, 2005, telling me they had matching lungs. It was impeccable timing and quite unexpected since the doctors had indicated a transplant wasn’t expected until sometime in August (in fact we didn’t even have a bag packed)! I was on cloud nine when I entered the hospital for my transplant. I can still recall the day after when I awoke from the transplant. The sun was shining brightly into my room and it was at that moment I realized God was shining down upon me because the transplant was successful! I experienced few problems during my stay in the hospital. I began walking with assistance after the second day, and didn’t need oxygen after the third day. On the fifth day after all my chest tubes were removed, I breathed deeply and could feel the bottom of my lungs for the first time in my life – it was the most amazing feeling and at that point no matter what happened the transplant was worth it! The biggest complication was the development of diabetes and learning to control my blood sugars with insulin. However, I would much prefer having control over my diabetes, than the lack of control I had over my cystic fibrosis.

They released me from the hospital after nine days and I began pulmonary rehabilitation immediately. I was amazed at how quickly I began exercising at a level greater than pre-transplant. After my first bronchoscopy, I had some rejection, but it was treated appropriately, and since I have not experienced any rejection. I also had a small infection, but that was treated with I.V. antibiotics. The chest pain was probably the worst suffering I experienced, but it was minor compared to the awesome feeling of truly breathing with full lung capacity.

I successfully completed pulmonary rehabilitation at the end of August 2005. At the beginning of September, I returned to work part-time through the end of October. I have been working full-time since November and am now preparing to take the February bar examination. The amount of energy I possess is incredible, so I continue to exercise about five times a week. I also religiously monitor my blood pressure, temperature, oxygen saturation, and spirometry to make certain I catch any fluctuations as early as possible.

I am most grateful to God for allowing me this opportunity to continue to have an impact on others. I cherish the donor’s gift to me and intend to use my new lungs to their fullest extent. Immediately prior to the transplant, my life expectancy was only thirty years. With the transplant, I now hope to celebrate my 50th wedding anniversary by dancing the night away with my wife.