Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Sher I think Tina wants to go everywhere....more power to her, too. I'd love to come to all gatherings, but there is a limit to what I can do. > > > > > > Ok, the doctor called last night at 9:30pm. She was going over > > > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) > and > > > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided > > they > > > were no longer going to treat my NSIP with Cellcept as the feel this > > is > > > not what is causing my issues as of late! > > > > > > Now they were going to ween me off the cellcept and my current pred > > > (which I have been on 15mg for a year) and introduce Zithromax or > > > Biaxin for the RB! There have been studies in Japan that chronic use > > > of either has show to help the RB. > > > > > > I am so confused right now? > > > > > > Anybody else go through these med changes for the intersitial > > diseases? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 I know Bruce, for us too...we pay double everything. Sure wish I could have been born rich instead of so good lookin'. It truly would be so much easier if we didn't have to worry about breathing, wouldn't it? And, the money we usually spend on 2-3 trips/yearly seems to be dwindling w/ more and more Rx. You get the drill. I'm so glad you have your chair. What a wonderful way to get around for you! Take some pictures for us so we can see when you get back...or along the way. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Oregon Get Together SherI think Tina wants to go everywhere....more power to her, too. I'd loveto come to all gatherings, but there is a limit to what I can do.> > >> > > Ok, the doctor called last night at 9:30pm. She was going over> > > everything (CAT-scans, PFT's and MY lung biopsy results from 2000)> and> > > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided> > they> > > were no longer going to treat my NSIP with Cellcept as the feelthis> > is> > > not what is causing my issues as of late!> > >> > > Now they were going to ween me off the cellcept and my currentpred> > > (which I have been on 15mg for a year) and introduce Zithromax or> > > Biaxin for the RB! There have been studies in Japan that chronicuse> > > of either has show to help the RB.> > >> > > I am so confused right now?> > >> > > Anybody else go through these med changes for the intersitial> > diseases?> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 I do love to travel! I want all of my trips to include somebody from this Board....I am so excited about San . And, I will be in Houston for the Pulmonary Hypertension Association International Conference from June 19-22, 2008. I think I told you all that I had won a scholarship to attend this conference, didn't I? If not, I am telling you now. I had to write an essay and they picked me! All of the expenses for that trip are paid for by the Association scholarship. I hope to come away from it loaded with information and spirit. My pulmonologist from the Cleveland Clinic is one of the speakers at the event too! I was excited to learn of that. Anyway, my trips will be well thought out and planned according to finances, like most of us here. But, I want to go to as many " get togethers " as possible. And, while in Houston, I am hoping somebody from this Board is able to meet with me. Anybody interested? We could have a " mini get together luncheon " , or something. God Bless, Tina IPF PH Ohio > > > > > > > > Ok, the doctor called last night at 9:30pm. She was going over > > > > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) > > and > > > > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided > > > they > > > > were no longer going to treat my NSIP with Cellcept as the feel > this > > > is > > > > not what is causing my issues as of late! > > > > > > > > Now they were going to ween me off the cellcept and my current > pred > > > > (which I have been on 15mg for a year) and introduce Zithromax or > > > > Biaxin for the RB! There have been studies in Japan that chronic > use > > > > of either has show to help the RB. > > > > > > > > I am so confused right now? > > > > > > > > Anybody else go through these med changes for the intersitial > > > diseases? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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