Guest guest Posted November 5, 2008 Report Posted November 5, 2008 saw transplant doc yesterday the FVC L was down significantly since July seriously talking transplant transplant doc will contact pulmonary who I see next Wednesday transplant doc will discuss increasing prednisone with pulmonary transplant doc wants to see me in 6 weeks i think i am psychologically getting myself ready to be listed made a list of quality of life issues really scared prior to pulmonary doc, will do 6 min walk and full PFT'sPink Joyce IPF 3/06 Pennsylvania Quote
Guest guest Posted November 5, 2008 Report Posted November 5, 2008 Joyce, It is scary and it does take mental preparation to even imagine coping with this. You are in my thoughts and prayers! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: breathe-support Sent: Wednesday, November 5, 2008 7:35:43 PMSubject: transplant doc saw transplant doc yesterday the FVC L was down significantly since July seriously talking transplant transplant doc will contact pulmonary who I see next Wednesday transplant doc will discuss increasing prednisone with pulmonary transplant doc wants to see me in 6 weeks i think i am psychologically getting myself ready to be listed made a list of quality of life issues really scared prior to pulmonary doc, will do 6 min walk and full PFT'sPink Joyce IPF 3/06 Pennsylvania Quote
Guest guest Posted November 5, 2008 Report Posted November 5, 2008 Joyce, Yes, it is very scary. How much prednisone are you on now? I upped mine when my sats started slipping again ( from 10 to 12.5) . It worked and I am back to using oxygen only when I am moving and sleeping. I am also using Flovent (steroid inhaler). I know the side effects are dismal, but I decided to risk side effects to keep living a fairly normal life. I so admire Gwynne and Judy and for going through with the transplant, but like you I am still scared to death of it . I will be praying that God gives you peace about whatever decision you make. R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: transplant docTo: breathe-support Date: Wednesday, November 5, 2008, 4:35 PM saw transplant doc yesterday the FVC L was down significantly since July seriously talking transplant transplant doc will contact pulmonary who I see next Wednesday transplant doc will discuss increasing prednisone with pulmonary transplant doc wants to see me in 6 weeks i think i am psychologically getting myself ready to be listed made a list of quality of life issues really scared prior to pulmonary doc, will do 6 min walk and full PFT'sPink Joyce IPF 3/06 Pennsylvania Quote
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