Fibrosing Mediastinitis Disablitity

Can this cause a disability where you won’t be able to work any longer?

hi my name is Mary and I live in maryville tn. I have had this disease since 1978. I was living in ashland Ohio at the time. In 1999 we moved to tn I didn’t have any problems until I moved to tn. I had to go on disability and I am on oxygen 24 hrs a day. I haven’t been able to see a doctor because I don’t have any insurance and you have to be on disability for 2 years before you get insurance.

Hey Mammie,

I am new to this disease or diagnosis as well and from what I can research in some cases or most cases it eventually does. I was diagnosed back in Sept 2006 after being sick for over a year with multiple hospital stays with pneum. My chest x-rays and CT Scans kept showing something but the doctors here where I live didn’t exactly know what it was. The local pulmonary doctor did a bronch and thats when they found out what all was wrong with . . . pieces of the puzzle started fitting. I was sent to Atlanta to a Critical Care Intervention Pulmanologist who as soon as he saw it knew exactly what was wrong. I became the talk to the Pulm. wing at the hospital (Emory University Hospital). I know that my husband and I have been discussing becoming as debt free as possible so I can come out of work maybe this time next year due to how fatigued, tired and the amount of chest, back and side pain that I have all the time. Along with the headaches, swelling, etc. I have FM in my airways (not the arteries and veins) and it also covers about 1/2 of my right lung.

Penny-Atlanta

P. S. I am originally from Tennessee just northeast of Knoxville. Where are you from.

Haivng no insurance can make trying to maintain some kind of control of this disease twice as hard. I too don’t have insurance and have been turned down for disability twice already. But what is there to do. I had to go visit my lung doctor last year and it was $300 just to get in to see him no counting the test and stuff that had to be done. I wouldn’t have went but had begun spitting up blood again and got concerned.

I was just diagnosed with FM a month ago after extensive testing and a recent hospital stay. I’ve been back to see my MD and she has told me that I will be able to work at a desk job, not to go back to my current employer. But this causes a problem since my insurance is through my current employer and I don’t want to loose my health insurance. I’ve spoken to my manager and have explained to him that a desk job is all that my MD will allow me to do at this point and he has stated that there is no desk job for me at the company. I don’t want to quit my job and loose my health insurance, after all who is going to cover me now with this diagnosis on my health record. I feel like I’m between a rock and a hard place and don’t know what to do. Any advice?
Reba