Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Sher, Wow, I bet you're glad you're home and can rest and process all this now. It is alot to take in isn't it? The good news is definitely good because as you pointed out NSIP is much slower to progress than IPF. My doctor at Duke told me he has seen people with NSIP who've been "stable for decades". So here's wishing that for both you and I, right?! The PH is and unknown quantity at this point. So we'll wait and see what the tests show. The good news even about pulmonary hypertension though is that it is at least somewhat treatable using things like Tracleer and Viagra (Revatio). I'm glad you've got Dr. Raghu overseeing your care now. You will be much better served by him than you have been by your pulmo who was only seeing you occasionally. I will be praying that the mass in your pelvis is nothing serious. For now just rest and take it all in a little at a time. By the way PH can absolutely cause SOB. That's one of the most prominent symptoms of PH. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, October 18, 2009 1:53:38 PMSubject: Re: Sher>>Peggy  Well Peggy, good news and bad news. I haven't had time yet to research the 'bad' news... I was in Seattle (UWMC) for nearly a full day...Dr. Raghu is a man with patience, direct eye contact and answers all questions until I was wrung out and then I forgot some! How lucky I am to have him overlooking my care. He does not think I have IPF but instead NSIP. (Good news). He suspects PH, (bad news). Wants me have an echo with a 'wire' inserted into the heart to confirm. He thinks I may have an underlying heart condition as well. He confirms PF, "You do have Pulmonary Fibrosis". He hopes to confirm NSIP because it is slow progressing. ..even slower than the IPF and it can be treated using.Viagra or Tracleer (sp). He mentioned a third med but I can't remember now. I guess the PH can cause SOB too...(?) I'm thinking now that may be the reason I have SOB but sats are low 90s... As I said, I haven't had time to do any specific research. I'll go to the Files first. AND...can you stand more? There appears to be a 'mass' in my pelvic region. Go for Pelvis Ultrasound on the 21st. Dr. Raghu was not pleased that my pulmodude sees me seldom and I've had ONE blood gas drawn in 3 years! BTW, the blood gas shows my carbon dioxide HIGH and O2 is LOW. My fingers are tired too. Enough for this post...I'll add what I remember when it tired out memory re-boots. I haven't read all the posts so I hope this finds you feeling better today and stronger. Love ya girlfriend. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Sher Hey Ladybug, How is it going ?? I do hope you are having good days. I think of you and just know you are hurting is upsetting. Keep us posted. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
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