TRICIA:
My name is Tricia Edgell (Lewandowsky) and I was diagnosed with Fibrosing Mediastinitis in October of
2004 and have the form that develops from Histoplasmosis. I was 32 years old when I was diagnosed and
have lived in Michigan my entire life. I'll never know how or when I contracted histoplasmosis and I've come
to realize that it's not really important anyway!
I have two stents in my Superior Vena Cava and two stents in my right pulmonary artery. In both cases,
the stents were able to open up my veins for blood flow. Prior to the stents my SVC was completely closed
off due to blood clots and scar tissue and my body developed collateral veins to carry blood back to my
heart. My treatments have all occurred at Vanderbilt Medical Center in Nashville, Tennessee. My
symptoms, like many of you, include fatigue, swelling, chest pain, headache and fullness in my neck.
Living with Fibrosing Mediastinits has been difficult and the past two years have taught me about the
things that really matter. I tend not to worry as much about the little things and appreciate the simple gifts.
I've had to learn my limitations and listen to my body in order to live a balanced life.
I remember how scared I was when I was first diagnosed and how alone I felt. I found
fibrosingmediastinits.com which was launched by Nita Rice and I remember feeling hope and elation as I
read the interview with Dr. Loyd. So many of my questions were answered and I began to realize that
others have and are surviving this rare disease.
I have learned so much from many of you who share this disease and it is my hope to capture our history
and stories in order to help others who will be diagnosed in the future. We are a small group by number
but by working together we can make a difference!
Contact me at:
tlewy1@yahoo.com
My name is Tricia Edgell (Lewandowsky) and I was diagnosed with Fibrosing Mediastinitis in October of
2004 and have the form that develops from Histoplasmosis. I was 32 years old when I was diagnosed and
have lived in Michigan my entire life. I'll never know how or when I contracted histoplasmosis and I've come
to realize that it's not really important anyway!
I have two stents in my Superior Vena Cava and two stents in my right pulmonary artery. In both cases,
the stents were able to open up my veins for blood flow. Prior to the stents my SVC was completely closed
off due to blood clots and scar tissue and my body developed collateral veins to carry blood back to my
heart. My treatments have all occurred at Vanderbilt Medical Center in Nashville, Tennessee. My
symptoms, like many of you, include fatigue, swelling, chest pain, headache and fullness in my neck.
Living with Fibrosing Mediastinits has been difficult and the past two years have taught me about the
things that really matter. I tend not to worry as much about the little things and appreciate the simple gifts.
I've had to learn my limitations and listen to my body in order to live a balanced life.
I remember how scared I was when I was first diagnosed and how alone I felt. I found
fibrosingmediastinits.com which was launched by Nita Rice and I remember feeling hope and elation as I
read the interview with Dr. Loyd. So many of my questions were answered and I began to realize that
others have and are surviving this rare disease.
I have learned so much from many of you who share this disease and it is my hope to capture our history
and stories in order to help others who will be diagnosed in the future. We are a small group by number
but by working together we can make a difference!
Contact me at:
tlewy1@yahoo.com
