cindy j
User
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Meeting w/ surgeon and registering for Clofazimine - 2010/01/24 03:42
I will meet with my surgeon next week. I had an appointment with my Pulmonologist last week. After being on the treatments for over 32+ months, he says I have the most tenacious case he has ever dealt with. They showed me the list of failed medications, I didn't realize how many it had been, about 13-15. The Pulmonologist is now registering with the FDA to put me on Clofazimine. The new CT results showed too many nodules to count all over the right lung and I went form one large cavity, to four, three in the upper lobe and one in the middle. If I remember its the AFB, that is now a 4+. For over 2 years they have been telling me they wanted to remove the upper right lobe. They now want to remove the entire right lung. I must admit, it freaked me out a little, because I travel for a living, singing and speaking and I am only 40 years old. Any input on lung removal and Clofazimine is greatly appreciated. Thanks to this message board I know I will hear plenty good reports telling me all will be fine, smiles. Just needed to get this off my chest (no pun intended, ha), with people who understand. Thanks for listening. Will also post on the other message board.
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