My Journey with Wegener's
In August 1982, at the age of 18 years old, I was very much looking forward to starting college at the University of Wisconsin-Whitewater. Within the first few weeks of college, I noticed that cysts were forming on my cheeks and were leaving weeping, bloody depressions in my face. Soon after that my gums became painful and swollen and I began to have nosebleeds. On occasion, I returned home to see a dermatologist and a periodontist. Gum tissue samples resulted in a diagnosis of ANUG (Acute Necrotizing Ulcerative Gingivitis). I was told to brush with a mixture of baking soda and hydrogen peroxide. For my apparent acne-like lesions, Acutane was prescribed. With no positive results, the lesions on my face became larger, deeper and spread, with all symptoms persisting for the duration of that 1st semester.
Six weeks into the second semester of college it became obvious that I was in real trouble and had to leave school. My list of symptoms included severe hearing loss, tinnitus, exhaustion, night sweats, fever, cough, shortness of breath, bloody stools, amenorrhea, loss of appetite, fainting spells and substantial weight loss. The hearing loss seemed to warrant surgery to relieve the pain and pressure. By the morning of the surgery, I weighed just 85 pounds and had sustained a fever for over 2 weeks. The surgery was canceled and further investigation was begun. I was admitted to Glenbrook Hospital, in my hometown of Glenview, IL. An x-ray discovered a mass the size of an eggplant on the upper left lobe of my lungs. The doctors believed that there were looking at a diagnosis of 1 of 3 fatal diseases; Hodgkin's Lymphoma, Bone Marrow cancer, or a rare form of Leukemia. They assumed the worst and prepared my parents for my mortaility. Dr. Richard Derman, a blessing and a hero in my life, sat down next to me on my hospital bed, cradled me in his arms while my parents, sobbing, looked on told me that they’d make me “as comfortable as possible.” I admit to being kind of mad at him for making my parents so upset.....I replied to him, " I don't know what you said to my parents to make them so upset, but it's not true, I'm gonna be fine". My father always credited me for being a real fighter......small, but mighty. God gave me the gift of passion and drive.
Biopsy results came back inconclusive, but negative for cancer. The mass on my lung was cancer negative. What was wrong? The Wegener’s diagnosis was finally made when a piece of my lung tissue was sent to the National Institutes of Health (NIH) in Bethesda, Maryland. A doctor, who was leading research on a little known disease called Wegener’s at the time, Dr. Anthony Fauci, was the diagnostician. I have yet to meet him but I owe him my eternal gratitude for saving me when there was little hope left. Dr. Fauci was later appointed by President Ronald Reagan to head up research on the National AIDS Crisis, and recently received the Presidential Medal of Freedom for his efforts. I live, in large part, due to this man's brilliance and am honored to be on his list of lives that he has saved.
I was in the hospital for nine weeks to the day. During that time I had 5 surgeries and several procedures. Initially, I was treated for over 2 ½ years with immunosuppressive therapy. I lost most of my hair. I had many setbacks the first year and often described the battle I was in as "getting nowhere, slowly". One night I prayed to God, “Please bring me home to You, I can’t do this anymore.” I woke up the next morning and said “Well then, God, you clearly have plans for me - let’s get to work”. The path has not been simple, easy or perfect.....what in life is? Yes, I have had 30 surgeries to date, live with chronic pain and challenges that would drive the most sane man to insanity. Wegener's didn't happen TO me, it happened FOR me. Truth.
I have recently undergone treatment for a relapse of Wegener's (and a secondary form of Vasculitis called Relapsing Polychondritis) after a 25 year remission.....one of the longest recorded remissions, I am proud to say. I focus on the future and the wonders of life that remain for me. One day at a time.....is all I know and all I have. I have survived thus far and Praise His Holy Grace for the gift of my challenges and trials that have strengthened me in ways I never thought possible.
Thanks for taking the time to read more about my journey.
Blessings- Jennifer
Six weeks into the second semester of college it became obvious that I was in real trouble and had to leave school. My list of symptoms included severe hearing loss, tinnitus, exhaustion, night sweats, fever, cough, shortness of breath, bloody stools, amenorrhea, loss of appetite, fainting spells and substantial weight loss. The hearing loss seemed to warrant surgery to relieve the pain and pressure. By the morning of the surgery, I weighed just 85 pounds and had sustained a fever for over 2 weeks. The surgery was canceled and further investigation was begun. I was admitted to Glenbrook Hospital, in my hometown of Glenview, IL. An x-ray discovered a mass the size of an eggplant on the upper left lobe of my lungs. The doctors believed that there were looking at a diagnosis of 1 of 3 fatal diseases; Hodgkin's Lymphoma, Bone Marrow cancer, or a rare form of Leukemia. They assumed the worst and prepared my parents for my mortaility. Dr. Richard Derman, a blessing and a hero in my life, sat down next to me on my hospital bed, cradled me in his arms while my parents, sobbing, looked on told me that they’d make me “as comfortable as possible.” I admit to being kind of mad at him for making my parents so upset.....I replied to him, " I don't know what you said to my parents to make them so upset, but it's not true, I'm gonna be fine". My father always credited me for being a real fighter......small, but mighty. God gave me the gift of passion and drive.
Biopsy results came back inconclusive, but negative for cancer. The mass on my lung was cancer negative. What was wrong? The Wegener’s diagnosis was finally made when a piece of my lung tissue was sent to the National Institutes of Health (NIH) in Bethesda, Maryland. A doctor, who was leading research on a little known disease called Wegener’s at the time, Dr. Anthony Fauci, was the diagnostician. I have yet to meet him but I owe him my eternal gratitude for saving me when there was little hope left. Dr. Fauci was later appointed by President Ronald Reagan to head up research on the National AIDS Crisis, and recently received the Presidential Medal of Freedom for his efforts. I live, in large part, due to this man's brilliance and am honored to be on his list of lives that he has saved.
I was in the hospital for nine weeks to the day. During that time I had 5 surgeries and several procedures. Initially, I was treated for over 2 ½ years with immunosuppressive therapy. I lost most of my hair. I had many setbacks the first year and often described the battle I was in as "getting nowhere, slowly". One night I prayed to God, “Please bring me home to You, I can’t do this anymore.” I woke up the next morning and said “Well then, God, you clearly have plans for me - let’s get to work”. The path has not been simple, easy or perfect.....what in life is? Yes, I have had 30 surgeries to date, live with chronic pain and challenges that would drive the most sane man to insanity. Wegener's didn't happen TO me, it happened FOR me. Truth.
I have recently undergone treatment for a relapse of Wegener's (and a secondary form of Vasculitis called Relapsing Polychondritis) after a 25 year remission.....one of the longest recorded remissions, I am proud to say. I focus on the future and the wonders of life that remain for me. One day at a time.....is all I know and all I have. I have survived thus far and Praise His Holy Grace for the gift of my challenges and trials that have strengthened me in ways I never thought possible.
Thanks for taking the time to read more about my journey.
Blessings- Jennifer
