A Fibrosing Mediastinitis story

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I have been living with this disease for nearly 12 years. I have 7 stents in my super vena cava (SVC) I started out getting 3 then after some more symptoms came back I have gotten 4 more. I see Dr Doyle and Dr Loyd at Vanderbilt in Nashville TN

When I would wake up in the mornings my face would be swelled and eyes were almost swelled shut. When I would bend over and raise back up I would get dizzy.

I went to my Dr and he done some tests and put me on diflucan for 6 months that seemed to help some. He sent to a infectious disease dr and he really couldn't find anything, so with that being said my Dr then just gave up so I decided to chance my Dr and found one that would take me in.  Well here we go again some more test and his own test. He didn't like what he was seeing and he referred me to the Dr at Vanderbilt and that is when my life changed. I finally got diagnosed after 3 years of not knowing. After the Dr's at Vanderbilt did their own test they realized what they were dealing with. One even made the comment I can't believe you aren't already 6ft under or had a stroke yet.. I told them God was looking after me.

This is a rare disease and the drs in my hometown just look at me when I have to make a trip to the ER. My dr keeps check on me and my symptoms and when I feel the need that I need to make a trip to Vandy then he sets it up with them there along with my symptoms.

I still work a 12 hour swing shift job.

I had to give up my hobby of playing softball which I had played for nearly 30 years before quitting.

Hopefully one day that they will find a cure for this.