Histoplasmosis related Fibrosing Mediastinitis

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My son Cody was diagnosed with this awful disease the Fall of 2011 after months of misdiagnosis. He had just graduated high school in 2010 & started his first year in college to become a game designer. His symptoms started shortly after his 19th birthday in the Spring of 2011. The months followed he was having the following symptoms: uncontrollable cough which resulted in vomitting, weight loss & a slight pressure in his chest. He was treated for acid reflux & allergies. No medication or treatment would help. He lost 116 pounds withing a few months so his thyroid was tested for hyperthyroidism, which came out good.

Our doctor along with me saw that nothing was helping so he ordered a chest x-ray. That is when they spotted a mass which was located at the bronchial split. We were then sent to a specialist to get a biopsy. After he looking at the x-ray he mentioned 2 things, lymphoma or fibrosing mediastinitis. But until he gets a biopsy there was no saying which one. He went on to tell us that we should hope it was lymphoma because he could at least fight it & worst case scenario he had fibrosing mediastinitis. He scheduled Cody for a mediastinoscopy, got a sample & sent it off. After the procedure he came out to tell us that after years of doing this procedure the sample he got did not look like lymphoma. So we waited.

A couple weeks later it was confirmed & we were then sent to our University Hospital & Clinics. This was the Fall of the same year. Then the battery of tests began & our journey began.

After 4 years of in & out of the hospital from hemoptysis, collapsed lung, stent procedures, occluded bronchial tube & chemical induced comas, Cody lost his battle October 2015. Fibrosing Mediastinitis was not the cause but one of the symptoms of the disease, pulmonary arterial hypertension, was what led to his demise. He was 23 years old. I miss him terribly.

Since his diagnosis I have researched eveeything I could about the disease. I also raise awareness for people with a rare disease through a national organization. I am doing what I can as one person to get more research done but have hit brick walls in the process.