Any one with fibrosing mediastinitis?

I found out I have fibrosing mediastinitis. The lung Dr's here in Indiana can not do anything. I am waiting to get a appointment with Mayo. I am o e the waiting list now. But I have been sick for 6 months now. In and out of hospital. I can not seam to get any better. I am afraid I will get sick again and get put back in the hospital. Talking with Mayo it will not be until may or later that I can get in. Any one have this and know what I can do?