Originally Posted by
me2
My experience is a lot like yours Sangye, both with the disease and the response of my doctors. I know we have talked about this before. I haven't had a direct conversation about smoldering disease with my doc but he treats me like I'm doing fine as long as I'm not physically sitting in his room.
I have had smoldering , and more than smoldering, disease for over 12 years now.
I will say that I am doing better than five years ago, or two years ago, but I'm a fair piece from healthy. I'm encouraged and for the length of time that I have been sick and the many serious events and hospitalizations I have had it is surprising that today my message is hope.
If I can go through all that, for that long, and be feeling like I'm gaining ground... well, its amazing. And I hope my good friends here can find recovery faster and more robustly- I've had that happen too.
Your Dr Seo sounds like a wonderful Dr and a good person. I have a favorite Dr who treated me initially over thirty years ago, but he is not perfect and has made mistakes and has his blind spots too. He might say the same about me.
I am optimistic that treatment and treatment options will continue to evolve for us especially as we stay involved and help the good Drs to ask good questions.
I get Rituxan a week from tomorrow and tracheal dilation shortly after that. For me class is still in session.
Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.
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