Duke Transplant Friends

      It all started while driving to work one morning in June 1989, when I began experiencing pain in my eyes and it became very difficult to see. Immediately, I went to an optomologist who diagnosed me with sarcoidosis in the eyes. Sarcoidosis is an inflammation that produces tiny lumps of cells called granulomas that grow and clump together that can attack various organs in the body. He informed me that if I did not immediately seek medical treatment, that I would begin to permanently lose my vision in approximately three weeks. After a year of being treated with large doses of prednisone the sarcoidosis cleared up and I did not experience any problems until ten years later.

     I was always very athletic and participated in a number of sports. Several years ago, I was jogging approximately 25 miles a week, weightlifting, attending step/water aerobic classes, playing basketball and softball. Jokingly, it was my goal to be on the front cover of Muscle and Fitness by the time I turned fifty (I have less than a year to prepare). In March 1999, I noticed that it was becoming increasingly difficult to breathe while jogging. After having a number of chest ex-rays taken and performing Pulmonary Functions Tests, the doctors determined that the sarcoidosis moved to my lungs creating extensive scar tissue thereby reducing my breathing capacity. In November 1999, I was hospitalized for pneumonia in both lungs along with aspergilliosis (fungus and mold growing in my lungs). After being released from the hospital, I continued to be under the watchful care of my pulmonologist with no new significant developments.

     In 2001, for the first time, my pulmonologist mentioned the possibility of me having to undergo a lung transplant in the future. As I did not see this as an immediate concern, I just assumed that he was hypothetically speaking. Although my ex-rays and other tests were not good, I still did not give much thought about having a lung transplant.

     Despite being diagnosed with sarcoidosis and aspergilliosis, I did not consider myself sick. I was not on medication for extended periods of time and I basically lived a normal life. Over a five year span I occasionally suffered bronchial infections that required me to be hospitalized for few days. Nevertheless, I perceived each period of hospitalization as a mere minor inconvenience. By 2001-2002 I was being evaluated for a lung transplant at Inova Fairfax Hospital. I did not get along very well with the doctor so I thought it was best that I remove myself from the program and avoid the humiliation of being kicked out. In the meantime it was getting harder to complete the simplest task and consequently I was required to use oxygen on exertion.

     Over the next several years, performing minor tasks turned out to be difficult chores. I had a nagging constant cough that depleted my energy. Although I continued to work, it required hours of preparation. Once I gathered enough strength to start the day, I would take a shower and have to rest for about forty minutes; brush my teeth and rest for about another forty minutes; get dressed and by that time, I was thoroughly exhausted and debated whether it was worth going to work. Once I arrived at work, I had to sit in the car for a while before I could walk into the building.   Needless to say, I had a lot of pre-planning to do if I wanted to be anywhere on time.

          In 2004, the bronchial infections were becoming more frequent and more severe. By the end of 2004, my doctors referred me to Johns Hopkins Hospital to be evaluated for a lung transplant. I thought, “I’ll just go through the motions just to prove the doctors wrong. Yet, it was a mystery to my doctors that I could work full time as an attorney (I had just experienced the excitement of having my first published legal opinion); attend court proceedings; preside as president of the Bar Association; plan a wedding and be as active as I was based on the condition of my lungs. Reviewing my ex-rays prior to meeting me, most doctors just assumed that I was an invalid and required a wheelchair.

     One month after being referred to Johns Hopkins, they informed me that I was too “high risk” and was not accepted into their program. They suggested that I contact Duke University Medical Center, University of Pittsburgh and the Cleveland Clinic because those centers were more familiar with “high risk” patients. As I was in denial of needing a lung transplant, I took no further action and continued with life as normal. Several months later, as a fleeting thought, I decided to have my doctor refer me to Duke for an evaluation. Admittedly, I did not research any of the recommended medical facilities but blindly selected Duke on the basis of its location. In hindsight, I realize this was the best choice.

     In June 2005, my husband and I headed to Duke to begin the evaluation process. It was a long and tiresome week but I felt that it was all worthwhile because I was certain that the doctors at Duke would support my position that I did not need a lung transplant. After undergoing additional tests in November, I was surprised to receive a call in December suggesting that I should consider relocating to North Carolina. My initial thought was this had to be one big hoax! After all, how could anyone conclude that I needed a lung transplant when I could exercise daily, work fulltime and with the exception of a few short hospital stays, feel perfectly healthy?

     I continued to work full time up until a week before relocating to Durham. Reluctantly, my husband stayed at home to work while my mother accompanied me to North Carolina. At the beginning of February 2006, I started rehabilitation at the Center for Living. My passion was exercising, so to me the Center for Living was great. On or about March 6, 2006, I was activated on the transplant list and on March 13 at approximately 6:30p.m. I received the “call” from Duke. Once they received the word that the organ was “good”, it seemed like there were hundreds of people all around asking questions; filling out forms; taking vitals; drawing blood; inserting needles etc. Then all of a sudden, I was there alone for what seemed like eternity, while thinking, “when are they going to realize that I don’t need a transplant?”

     My family told me that my surgery took approximately 16 hours…much longer than was initially anticipated. The doctors knew that they had to take extreme precautions to prevent the aspergilliosis from infecting my bloodstream; however, they were astonished to find that the aspergilliosis had calcified and converted to bone. Dr. Davis and other members of the transplant team had the long and tedious task of making sure all the aspergilliosis was removed before they could transplant the new lungs.

     Far from being an ideal patient, I imagine the doctors and hospital personnel at Duke were elated when I was released. I liked being in control and having things done my way and oftentimes this led to discord with the doctors. The entire transplant process was frightening and stressful--- relocating to unfamiliar surroundings; being away from family and support network; waiting; clinic visits etc. I left Durham and returned home earlier than recommended by the doctors, only to be readmitted to the hospital and returned to the Center for Living three weeks later. Overall, I stayed in Durham for approximately seven months. Looking back over this experience, I have truly come to appreciate the excellent medical treatment I received from doctors and personnel at Duke and the staff at the Center for Living.

     Returning to a sense of normalcy was very instrumental in my recovery process. I resumed working full time in January 2007 after being out for a year. Additionally, I resumed participating in a number of professional and civic organizations. Realistically, I gave up my goal of being on the front cover of Muscle and Fitness by next year. At times, it’s hard for me to believe that I had a lung transplant almost two years ago; however taking the medications are a constant reminder that post transplant, life will never be the same.

   As I reflect over the last two years, I realize that my lung transplant had more to do with my spiritual growth and dependence on God and less about the health challenges I faced.   I felt guilty knowing that somewhere a family was grieving while I was rejoicing in receiving new lungs. I learned to be patient while waiting to be placed on the transplant list; anticipating the long awaited call and praying that it’s not a “dry” run; eagerly looking forward to being strong enough to walk and breathe at the same time without the assistance of oxygen; dreading the long days at the Duke Clinic; praying there are no signs of rejection and with great anticipation, longing for the day that the doctors would release me to go home. Then, I had to confront my fears of returning home---fear of being too far away from Duke Medical Center in the event of an emergency; remembering to take and refill my medications on time and learning how to protect my health post transplant. The anxieties that a lung transplant patient experiences is the reason we share a common bond that few others will ever understand.

     Since my transplant, I am much more appreciative of life and my relationship with Christ. I welcome each day as a precious gift from God and a wonderful new beginning. No, life will never be the same for me…but without the lung transplant experience, I might not have experienced my remarkable spiritual journey.