My name is Emily Olson Williams and I was diagnosed with Histoplasmosis related Fibrosing Mediastinitis in June
2008. I am 27 years old and, for the last 6 or 7 years, had been feeling more and more short of breath…something
that I decided was probably due to my gradually becoming more out of shape, which my family thought was crazy
because I’ve always been relatively active. For the past 2 years I have been getting sick every December and
dealing with an ongoing cough until about March, sometimes later. I also am randomly afflicted with pleuritic chest
pain…something that one doctor, 4 years ago, said was a pulled muscle. For some back history, I was given my first
CT scan when I was about 16 for pnuemonia-like symptoms and pleurisy. The pulmonologist saw scar tissue on my
lungs and said that I had probably had Histoplasmosis when I was younger, but that it looked as if it had gone away
and that I was just left with the scarring. I had been living in Mississippi since I was 7 years old at that point, a region
known for many cases of Histo. We didn’t think more about it until 2003 when I came in with chest pain and my new
doctor, in Seattle, ordered a CT scan. She too saw scarring, but because the doctor’s office in MS had not kept my
older scan, had nothing to compare it with to see if there was any growth. She said that it would be interesting to
see if there was some growth in about 3 years, but, because I wasn’t showing any symptoms at the time, that I was
probably all right. Three years later, I went to a specialist and had another CT scan done and he said that my right
lymph node was a little swollen. He told me that I might have a slight infection or there was a slight possibility that I
had sarcoidosis, an autoimmune disorder. He checked my lung function, which he found to be only very slightly
lower than normal and, because my blood was very well oxygenated, he told me to get a follow-up in about 6
months. That winter, 2007-08 was especially hard and my coughing was rougher than usual and lasted about 4-5
months. I went in to see a doctor at the health center at my school, University of Washington, and we discussed the
past 8 years. She thought that I should see a second pulmonologist and referred me to one at the Univ. of Wash.
Medical Center. They ordered a new CT scan and I went home to keep planning my wedding and wait to find out
the results. My fiancé and I were doing some shopping when the doctor called me about my results. She said that
my lymph nodes, on the right side, were grossly enlarged and that the mass was pushing into my heart. Needless
to say, we were completely freaked out! I went in for new testing; I had an echocardiogram, a bronchoscopy, a VQ
scan and multiple blood tests. Finally, my doctors told me that it was probably one of two disorders, mediastinal
granulomar or fibrosing mediastinitis; I was told that the FM was the one I didn’t want, as there is no cure. To be
sure, they ordered a mediastinoscopy. I got married that weekend, on June 14 and , 3 days later on June 17, I went
in for surgery and a biopsy. A week later, I was tentatively diagnosed with FM. I was put on Itraconazole to see if it
would have any effect on the growing lymph nodes. My husband and I drove from Seattle to Virginia at the end of
July so that he could attend law school this year. We were lucky enough to be able to see Dr. Jim Lloyd at
Vanderbilt on the way and he told me that I definitely have FM. After settling in to our new home, I went to see my
new pulmonologist at the Univ. of Virginia to get an MRI. We were investigating the possibility of placing a stent in
my right pulmonary artery which is almost completely closed off. Right now I only have about 5% blood flow to my
right lung, making that lung pretty much useless. The MRI showed that the artery had too long of an affected area
and was probably too closed off for a stent and that the Intraconazole had not reduced the lymph nodes. The good
news was that there was no progression in the disease, so we are grateful for that. This disorder has had a huge
effect on my life and the lives of my family members, as I’m sure everyone else with FM can testify. My husband and
I have been advised that it would be possible, but probably extremely hard and potentially devastating, for me to
carry my own child. We have, for the time, decided that adopting would be a great option, but it has been hard for
us to give up on having our own baby. I am extremely lucky in that the only symptoms I have continually are extreme
shortness of breath with anything cardiovascular in nature, panic-inducing tightness in my chest, slight, but
constant, coughing and periodic pleuritic chest pain. I know that I could be in much worse shape and feel blessed
that I am not. This disorder has also taught me about what really matters in life, as hallmark as that sounds, and I
take better care of myself and my loved ones. I also think that I am a happier person than I was before, despite the
anger and, sometimes, depression. I realize how beautiful everything is and I try to enjoy every moment.
Emily Olson Williams