Rare Disease: Fibrosing Mediastinitis

By Dawnyell, Fibrosing mediastinitis, United States, March 1, 2019

I was recently diagnosed with this rare disorder a few weeks ago called Fibrosing Mediastinitis. Currently this condition is not curable and since it was left untreated, it has caused major complications for my health.

Although it's difficult for me, I'm opening up and sharing my story about this rare disorder. I hope that there will be resources found for anyone that is dealing with this condition, so they can get help before it progresses.

I had been in the hospital for 11 days in my hometown of Cincinnati, Ohio. Then, I was blessed to be in the Cleveland Clinic under the care of a team of pulmonologists familiar with this disorder for 2 weeks.

I have scar tissue on the right lung that has grown over time and is now blocking my pulmonary vein which affects blood flow and oxygen.

Fibrosing Mediastinitis is a late complication of histoplasmosis. Histoplasmosis is a soil-based fungus that is airborne and from my understanding, it may be seen as a common cold in kids.

You may be exposed to it when you are a kid, and you may not show symptoms, or it may not be discovered until the ages of 21-40 years old.

Growing up, I was very active in track and cheerleading. I'm a vocalist, musician and was classically trained in music. I have worked in Corporate America for over 15 years and continued to work after a successful pregnancy and childbirth in 2007.

I had breathing problems in my 20's, that led me to be examined. I had X-rays, CT scans and a biopsy that found scarring on my right lung. Over the years, I had been hospitalized for asthma symptoms in my 20's and 30's. I had been treated and released.

The symptoms for histoplasmosis are similar to asthma. Shortness of breath, wheezing, coughing, chest pain, flu like symptoms, along with other signs.

In January 2018, I was hospitalized on a Monday and was there for a week for the flu. I had never had the flu. By Wednesday, I was placed on oxygen. By Friday, I was released with oxygen and instructions for home use. All of this in addition to my regular asthma breathing treatments and medication.

I had gone the entire year, not knowing, not getting a clear answer. Why was I on oxygen?

I had those same symptoms along with feeling very fatigued in December 2018. I made it through the holidays and a few doctor visits, before I was advised to go to the emergency room in late January 2019. My oxygen level had dropped to 81 percent and I was hospitalized, then transported to Cleveland Clinic.

The doctors talked with us about a plan of action and within a week, I had undergone a promising procedure, but due to the progressing scar tissue, it was unsuccessful.

This diagnosis has been really hard on my family. My husband and son (whose 11), mom, dad and family members. When I first got to Cleveland which is four hours away from my hometown of Cincinnati, my mom and dad stayed in a hotel. My husband and son stayed with me in the hospital for a few days, but as treatment continued they moved to the hotel as well.

Last week, Thursday February 21st, I was released from the hospital and placed on medication and we hope to revisit this type of procedure in the next 3-4 months

It has honestly been really hard to deal with this diagnosis. I have been an advocate for my health, so I'm trying to understand it, yet stay strong in faith and belief that I will be here to accomplish my own goals and see my son grow up.

I will continue to be an advocate for my health and would like to connect with others dealing with this rare disorder.

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