Got up at 7:15 showered, breakfast and out the door at 8:40. We got to our appointment 25 min. early so I got my computer out, hooked up the headphones and they called us in.
Well, how do you go about telling everyone you love that your disease is killing you? There you have it. He showed me the ct scans on the computer and compared it with the 2004 scan and they were shockingly different. The EKG was abnormal, the lung function was abnormal from the scaring from the sarcoid. I need to see a gastrointerologist for the reflux which he called regurgitation. He did not say that there was a restriction in my throat but the reflux, scarring, possible cardiac involvement and anxiety may be causing that sensation. He told me that I really am getting air in and out but the noise is from said mentioned items. I am being scheduled with cardiology to rule out his suspected sarcoid in the heart. If that doesn’t scare you then I don’t know what will. I came here for news, it’s just not good news. I am crying and cant seem to stop. Just give me time to get used to the idea that my life will never be like it was. Is it no wonder that I am sometimes sad and cry a lot. I am to ree a rhumatologist tomorrow and he will give the pulmonologist more of an idea of the best meds to take. He already said prednisone is the one to start with. We will start with 3 months then come back to get lungs, heart, bp, blood work, ct’s, and bursitis checked for progression.
I cant keep talking about that…I am sitting in front of a huge wall of windows about 150 feet long and 12 feet high on the 17th floor. I am looking to the east. The fall colors are out and the traffic is moving and the sun is shinning. It’s SO beautiful and yet I am so sad. … I have to go back to the pulmonology desk to get my cardiology appmt. In about 20 min. Ralph ran back to the hotel to get our binder of tests because the lung doc. Asked if we had the previous lung function tests and this is the first time any doc has asked for any of them and this is the first time we decided to leave them in the room instead of hauling them around. I hope the heart test is this week yet. I am pretty sure I will have to come back again next week. I hope I don’t have to stay the weekend but Ralph said we will do what we have to do. And we will.