As I approach June 15, 2012, the eighth year anniversary of my double lung transplant, I want to express my appreciation to the staff at the Lung Transplant Program at Barnes Jewish Hospital in St. Louis, MO.
For years in the 1990s, I had a non-productive cough. The local pulmonologist sent me to get a chest X-ray which came back with a diagnosis of COPD. He believed I had pulmonary fibrosis and did not agree with the COPD diagnosis. He asked me to go to St. Louis or Denver to get a high resolution CT scan. On Valentine’s Day in 2000, I had a CT scan of my lungs at Barnes Jewish Hospital in St. Louis, MO. The radiologist reported that I had pulmonary fibrosis.
I went that summer to the National Jewish Research Center in Denver for a second opinion that included testing and a biopsy. Their diagnosis was idiopathic pulmonary fibrosis. They treated my disease. My Denver doctor wanted me to get on the list for a lung transplant and agreed that Barnes Hospital in St. Louis would be a good choice.
After four days of testing in December, 2000 at Barnes, Dr. Trulock told me that I was accepted into the program and would be put on a waiting list for a lung transplant. I continued my treatment in Denver and went yearly to Barnes following their instructions for preparation for a transplant. They gave me directions for the various requirements to be eligible to receive a transplant–immunizations, dental health, weight reduction, pulmonary rebab, transportation to the hospital within two hours of being called, etc.
In 2003 when my decline in lung function leveled off, they told me to go on the inactive list until I was closer to needing a transplant. That fall my declining numbers led my doctors to have me return to the active list. In the spring of 2004, my wife and I started preparing in earnest for moving to St. Louis for the transplant. The staff of the Barnes Lung Transplant Program helped us prepare for transplant–assisting in giving us suggestions for housing, pre-transplant education, post-transplant education, where to go and what to do when you receive the call to come for the transplant, etc. Their preparation was thorough and professional.
In April 2004, My president and dean allowed me to leave my college classroom three weeks early, and we moved to a furnished apartment in St. Louis near Barnes Hospital. On June 15, 2004 Dr. Myers performed my double lung transplant. Dr. Trulock, head of the medical transplant team, Dr. Hashem, and others have given me excellent care both before and after my transplant. Barnes provides pre-transplant and post-transplant coordinators, including Jan, Stacie, Tracey, Laura, Carol, who can be reached twenty-four hours a day when needed. Being highly knowledgeable, they are helpful in assisting one in dealing with any problem that arises. Tiffany and others who answer the phone when I call the Transplant office help in any way they can.
During the first year after my transplant I faced many problems, ten times making the 300-mile trip to Barnes from my home near Joplin, MO. I had mild rejection two times, but medication took care of it. In spite of some limitations, I have been grateful for this extension of my life. I retired from the college classroom in 2006 to spend more time with my family and do some writing.
In the last few months, I have had some challenges. In December 2011, my breathing function declined significantly and was diagnosed as chronic rejection of my lungs–a scarring of the small airways in the lungs. I received four days of infusion treatment at Barnes and returned home. In March 2012, I was coughing and ill. A swab test indicated I had RSV–a respiratory virus that is extremely serious for immunosuppressed persons. Again I had four days of treatment in the hospital for this virus. This year has been an uphill battle.
I am deeply grateful to the staff at Barnes Jewish Hospital for my lifesaving transplant. They know what they are doing in dealing with transplant patients. They care for you as a person, not just as a patient to be treated. A week after my March hospitalization at Barnes, I got a call from a nurse asking how I was doing, if I had any questions, and if they could do anything for me. Later I got a card signed by workers on the floor of my hospital room wishing me well. The staff has been as interested in keeping me as well as possible after transplant as they were before transplant.
I write this to say thank you to each person at Barnes who has served me in any way these past twelve years. I give tribute for a job well done. It would be impossible to assess the significance of your work of saving and extending lives. Keep up the good work.