Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 sherr glad to hear about the good news sorry to hear about the bad news Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sher>>PeggyTo: Breathe-Support Date: Sunday, October 18, 2009, 1:53 PM  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...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Thanks Bruce for your input. You and MB are so good to respond and give accurate answers! I think the Remodulin was the third med he mentioned. Now comes the hard part...the waiting. For Raghu's note to be typed up and sent out and then the wait for 'someone' to call me. When I get my copy I'll get on the phone and try to get an appt. He also wants another sleep study. He wasn't very receptive to my pulmodude being lax in following up on my care. As soon as the notes from Raghu settle in to the different docs and appropriate testing is scheduled I will look for another pulmodude. Maybe before. I just don't want to make things complicated. Now on to the Files... 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...
Guest guest Posted October 20, 2009 Report Share Posted October 20, 2009 Peggy it sounds like you are feeling better Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Sher>>PeggyTo: Breathe-Support Date: Monday, October 19, 2009, 5:07 PM Hi Sher, Yes I did get it. I thought I had answered you.. OD.. LOL Love the good news hate the bad. If you need a heart cath just do it.. thats the wire your referring to. I know you know I am right there with you. I GET IT. YOU are NOT alone.So don't be scured and just keep posting.. you'll feel better. Much Love and warn gentle hugs to you my friend.. 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."  Peggy...did you ever get this post?? 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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