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tiss (@tiss)

Fibrosing mediastinitis

Lung Health | Last Active: Mar 7 11:05am | Replies (28)

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I’ve been doing okay, a lot better than I was prior to coming to Mayo.

I was diagnosed in April. Last October I had to have an emergency pericardial window due to excess fluid around my heart. I developed blood clots in my left leg that went to my lungs- while in the hospital they discovered the mass in my chest. It wasn’t until late March that we ended up going to Mayo, as we thought the mass wasn’t anything to be concerned about. (We had done biopsies and another surgery to try and remove some of it, and everything came back negative) But in February/March, my breathing started getting bad again. We finally discovered that the mass was growing around my airways, so we came to Mayo.

They put a stent in my left airway to open it up since it was almost completely closed. The stent was in for about a week because it got filled with mucus/tissue from my body rejecting it, and my left lung had partially collapsed. They took the stent out, and I did 2 IV treatments of rituximab, as well as I’ve been on prednisone.

Overall I’m doing a lot better than I was. My breathing is better. I think my lungs were functioning at 63% when I came to Mayo the first time, and this last visit I was up to 74%. Certainly not great, but a whole lot better than where I was.

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Replies to "I’ve been doing okay, a lot better than I was prior to coming to Mayo. I..."

I'm glad you are doing better. There is a closed Facebook group on FM and there is good information. Did you see Dr Piekart at Mayo? That's who we were hoping Matt might be able to see. I hope the infusions work for you.