Story about Fibrosing Mediastinitis .

Indian Rock Cave in Arkansas

Sep 5, 2019

By: omahaboy

Year Condition Began: 2016


I'm 12 years old. When I was 9 years old, my family and I stayed at a Wyndham resort in Fairfield, AR the summer of 2016. The resort representative recommended going for a hike near the resort and going in Indian Rock Cave to see the hieroglyphics. It was a fun hike, and the cave was neat. She talked about how thousands of bats would fly out at night and you could see a dark streak in the sky as they flew out of the cave.

Shortly after that vacation, I had a hard time breathing when I laid down at night. Tests for allergies and asthma were negative. About a year and a half later, my right leg was swollen, and it didn't get better. The doctors performed many ultrasounds, tests, and lymphedema therapy. Nothing helped.

7 months after the swelling started, I had a small toe infection and was given antibiotics. At the end of the medication (10 days later), I began feeling very sick. I was coughing and felt awful and didn't want to go to school. We went to the doctor in early November 2018, and the x-rays of my lungs looked fine. A week later, I was still getting sicker and coughing up blood. My doctor heard what sounded like a heart murmur and sent me to the hospital for an echocardiogram. They said my heart was normal, so they did a chest x-ray, and this time I had pneumonia and pleural effusion (fluid in the wall between my lung and chest). They hospitalized me for one night and gave me Amoxicillin. I went home with my antibiotics and continued to get sicker. I went back a few days later, and the pleural effusion and pneumonia were worse. They hospitalized me for 3 more days with 3 strong antibiotics and released me to get better at home with stronger antibiotics. They said the pleural effusion would be gone by Christmas.

I went home and didn't get better. I slept in a recliner because the pain in my lung was unbearable when I laid down. The pleural effusion was not gone by Christmas, confirmed by x-rays. However, I was able to sleep laying down for 2 weeks. Then it took a turn for the worse again. At the end of January, my pulmonologist did a CT Scan and discovered that I had calcified lymphnodes in my lungs and no blood flow through my pulmonary artery. They looked at the echo from November and noticed it was blocked then, too. They said it was more than likely from histoplasmosis caused by breathing in fungus spores from bats.

They put me on amphotericin, a very strong antifungal drug that made me so sick and nauseous that I didn't touch food for 11 days. My kidneys were having trouble with the medication, so they did a biopsy on my kidneys. My lungs were also scarred and damaged from the pleural effusion, so they did a couple of biopsies of my lungs. I had blood drawn daily, many chest x-rays, CT scans, MRI's, echocardiograms, and EKGs while I was in the hospital for 25 days. They were going to do surgery, but a doctor from Vanderbilt University looked at my CT Scan the day before my surgery and thankfully let them know I have Fibrosing Mediastinitis and that surgery is usually fatal. The fibrous tissues covering the veins, arteries, and organs turns hard like cement and veins can get cut and can't be repaired. So they put a stent in my artery and released me from the hospital after 25 days. I've been doing pretty well since then. New collateral veins formed on my chest, arm, and leg shortly after the hospitalization, so my SVC may be blocked. I will get it checked next week.
Story about Fibrosing Mediastinitis

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