Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009  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 Oh, it hurts to know that my MamaSher is feeling so down. Let's have a cuppa tea tomorrow afternoon and forget for awhile our ailments. I'll do all the brewing and bring some cookies to boot. Know that I love your and am boosting you know who to get you in fine shape. Jack79/IPF - UIP/dx06/05 Maine 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...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 I'll bring the cake and cookies. I have plenty left from my party yesterday.. Oh did we have a great time.. I am onehappy camper today. 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." Oh, it hurts to know that my MamaSher is feeling so down. Let's have a cuppa tea tomorrow afternoon and forget for awhile our ailments. I'll do all the brewing and bring some cookies to boot. Know that I love your and am boosting you know who to get you in fine shape. Jack79/IPF - UIP/dx06/05 Maine From: Sher Bauman <bofus6 (AT) verizon (DOT) net>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...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Sher, I am so glad you were impressed with Dr. R. and that he took his time with you. I Like the NSIP part. The other is yetto be proven so lets just think the BEST.. I so want you to get some relief. Winter is coming and with it arthur pain... I am just sorry.I wish there was a quickie cure for all of us.. MASS--- NO NO NO.. you'll see they're mistaken.. I refuse for you to have to deal with anymore.. 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."  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 Sher Glad you enjoyed it. The Revatio and Tracleer would be for the PH. The other med he may have mentioned might have been Iloprost or Remodulin. It will be nice to have your NSIP confirmed as thats something you've thought now for a while. Also a reminder that often IPF is diagnosed too quickly by those not experienced in differentiating. Yes, PH can cause shortness of breath too. Sorry to hear about the pelvis issue but hopefully it will all check out ok. > > 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  Pink,,, me too! How are you??? 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 19, 2009 Report Share Posted October 19, 2009 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, 5:37 PM  Pink,,, me too! How are you??? 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 19, 2009 Report Share Posted October 19, 2009 Sher doing fine right now thanks 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, 5:37 PM  Pink,,, me too! How are you??? 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 19, 2009 Report Share Posted October 19, 2009  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...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 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...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009  Peggy, yes there are some here who have been here since I came on and I feel close to you. I've been trying to Skype you but not connecting. I wonder if I'm not doing something right... 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 19, 2009 Report Share Posted October 19, 2009 Sher It is me... I haven't had Skype on for a while. I have been so very tired and a lot going on here. I will turn it on . send me an e-mail when you want to get on and we'll do it. I haven't heard from for a little while. We have to all get together and Skype. I am taking my computer to Chatt. so we can Skype to anyone that wants to. 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, yes there are some here who have been here since I came on and I feel close to you. I've been trying to Skype you but not connecting. I wonder if I'm not doing something right... 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 November 22, 2009 Report Share Posted November 22, 2009 Hi Sher, I'm glad you liked Dr. Raghu and most of all that you are comfortable with him. He covers a lot of information during the visit doesn't he? You know you can contact his nurse, Carolyn, and she will send you his written summary of the visit you had with him. I have her e-mail address if you want it, just let me know. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, October 18, 2009 10:53:38 AMSubject: 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...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009  .... thanks, I have her email address and we have already communicated a few times. I also have Raghu's summary. I'm now making it my life purpose to be sure my pulmodude is in tandem with Raghu. The pulmodude has not been very attentive to returning pho calls and answering questions. I had to press 'his back to the wall' and now he does seem more attentive. I think it's because Raghu is at the wheel and pulmodude more or less carries out Raghu's orders. I'll be going back again in Jan. When do you go back? 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 November 22, 2009 Report Share Posted November 22, 2009 Yup, that's how it works with my pulmo doc and Raghu too. Raghu would prefer I be his patient alone, but Group Health won't go for it. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, November 22, 2009 12:39:54 PMSubject: Re: Sher>>Peggy  .... thanks, I have her email address and we have already communicated a few times. I also have Raghu's summary. I'm now making it my life purpose to be sure my pulmodude is in tandem with Raghu. The pulmodude has not been very attentive to returning pho calls and answering questions. I had to press 'his back to the wall' and now he does seem more attentive. I think it's because Raghu is at the wheel and pulmodude more or less carries out Raghu's orders. I'll be going back again in Jan. When do you go back? 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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