Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2...like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-support Sent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Thanks MB.My walk was without O2; guess that's why they stopped it so quickly!  I'm sure my sarcoid is still active because of the gallium scan I had in December.  It still shows up in lacrimal, salivary glands, nose and lungs.  My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough......Subject: Re: Visit to MUSCTo: Breathe-Support Date: Tuesday, January 12, 2010, 8:21 PM  Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2...like a stone. I'm worried that yours did that with oxygen.  You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk.  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2010 Report Share Posted January 12, 2010 Roxanne I share Beth's response and was wondering if you asked why he suggested discontinuing the treatment for Sarcoid? I do know that sometimes doctors do feel Sarcoid can go into fairly quiet periods. I hesitate to say dormant, although thats what they would say. The reason is that the disease is so complex, I'm not certain how one would know if it was affecting any part of the body. So by dormant or quiet, I guess I'm saying it wouldn't reflect in labs and in the most obvious signs. I even had a doctor theorize based on a very early lab (ACE) that I might have Sarcoidosis that had then gone dormant. The other doctor then said, if then it was dormant how was he suppose to diagnose it plus what then would he be expected to do for it. I do know some doctors argue over how long to continue the medications. Now, you should be very alert if you do come off the meds to watch for signs that the disease is resuming activity and manifesting itself. As to the echocardiogram and right heart catheter, run, don't walk, to get them done. I don't mean to panic you but PH is scary and treatable. I will continue my crusade to all for regular echos and for right heart catheters in the event deemed appropriate. I was also going to ask about the six minute or 80 foot walk. The drop you described is exactly what mine would do without oxygen. If you weren't on oxygen, I'm not sure then why they didn't put you on it to complete the walk. If you were on it, not sure why they didn't turn it up. > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2...like a stone. I'm worried that yours did that with oxygen. > > You are in my thoughts and prayers. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > From: Roxanne Wooten t.rox1@... > To: Breathe-support > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > >  > Hi all, > I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. >  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Roxanne,What did they say about your PH?To: Breathe-Support Sent: Tue, January 12, 2010 8:53:32 PMSubject: Re: Visit to MUSC Thanks MB.My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now..Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/ Gerd I pray you enough......From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point.. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development.. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Roxanne, Well now I'm even more confused. I don't understand why they stopped your walk as opposed to just giving you oxygen and since you know the Sarcoid is still active I don't understand why they stopped the treatment. Why not add the PH treatment to the regimen? But then I'm not a doctor and he must have a rationale for what he's doing. The PH is definitely most urgent. I second Bruce's urging to be evaluated post haste so that treatment can begin. Please keep us posted and you are in my prayers! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, January 12, 2010 8:53:32 PMSubject: Re: Visit to MUSC Thanks MB. My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 interesting the rt's where i go for the 6 min walk, keep O2 ready just in case i need it during the walk i would hope they would start the o2 and let me continue with the walk does anyone else know what they do in this situation? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Visit to MUSCTo: Breathe-Support Date: Tuesday, January 12, 2010, 8:53 PM Thanks MB. My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 thanks mary beth, you answered my question before you got to read it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 8:02 AM Roxanne, Well now I'm even more confused. I don't understand why they stopped your walk as opposed to just giving you oxygen and since you know the Sarcoid is still active I don't understand why they stopped the treatment. Why not add the PH treatment to the regimen? But then I'm not a doctor and he must have a rationale for what he's doing. The PH is definitely most urgent. I second Bruce's urging to be evaluated post haste so that treatment can begin. Please keep us posted and you are in my prayers! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 12, 2010 8:53:32 PMSubject: Re: Visit to MUSC Thanks MB. My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Bruce,I had so many questions to ask but something happened to my brain when he said "PH"; I simply went blank.  I'm not sure I remember the rest of the visit.  My husband was there and asked questions.  He says the doctor feels my lung sarcoid is "almost" in remission based on my labs and last gallium scan. The other places where I have it---salivary, parotid and lacrimal are not causing any real problems and thusly need not be medicated at this point.  He did advise continued 6 month exams with my eyes. My husband said it was his opinion that the doctor believes that if we agressively treat the PH, that the sarcoid problem will remiss on its own within the next couple of months (I've been in a flare for over 2 years).  This is a disease that comes and goes on its own which is one reason it is so hard to diagnose and treat.  Your doctor was correct in his statement on how to treat it if its in remission or dormant.  I've sent an email to MUSC this morning asking some questions that I forgot:  1) Will there be no further damage done to my lungs by ceasing medication now? 2) If I didn't know I had this disease anyway in the beginning, how will I know if I need to seek medical attention for it in the future when or if I flare again? What kind of symptoms will indicate the need to medicate?3) Since this disease is systemic, is it likely to flare in another place and not back in my lungs?4) Is my fibrosis and possible PH now considered primary to sarcoid?5) What about the vitamin D situation?6) How about my rehab in the meantime?  Can I continue until I have the PH resolved?I'm sure there are more and as I think of them I'll ask him.  He was so nice and told me pretty much what happened----I was overwhelmed, but when I left I immediately started remembering questions I had failed to ask...So he told me to call him or email him and he'd answer right away.Can you think of other questions I have forgotten?Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....Subject: Re: Visit to MUSCTo: Breathe-Support Date: Tuesday, January 12, 2010, 10:17 PM  Roxanne I share Beth's response and was wondering if you asked why he suggested discontinuing the treatment for Sarcoid? I do know that sometimes doctors do feel Sarcoid can go into fairly quiet periods. I hesitate to say dormant, although thats what they would say. The reason is that the disease is so complex, I'm not certain how one would know if it was affecting any part of the body. So by dormant or quiet, I guess I'm saying it wouldn't reflect in labs and in the most obvious signs. I even had a doctor theorize based on a very early lab (ACE) that I might have Sarcoidosis that had then gone dormant. The other doctor then said, if then it was dormant how was he suppose to diagnose it plus what then would he be expected to do for it. I do know some doctors argue over how long to continue the medications. Now, you should be very alert if you do come off the meds to watch for signs that the disease is resuming activity and manifesting itself. As to the echocardiogram and right heart catheter, run, don't walk, to get them done. I don't mean to panic you but PH is scary and treatable. I will continue my crusade to all for regular echos and for right heart catheters in the event deemed appropriate. I was also going to ask about the six minute or 80 foot walk. The drop you described is exactly what mine would do without oxygen. If you weren't on oxygen, I'm not sure then why they didn't put you on it to complete the walk. If you were on it, not sure why they didn't turn it up. > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2...like a stone. I'm worried that yours did that with oxygen. > > You are in my thoughts and prayers. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ____________ _________ _________ __ > From: Roxanne Wooten t.rox1@... > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > >  > Hi all, > I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr.. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. >  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 ,I am not even sure that I have PH yet.  The doctor at MUSC said after review test and in particular my PFT's that he suspects PH is my problem.  His recommendation is another echo and right heart cath right away.  I've already placed a call to my pulmo to get things started.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM  Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen.  You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point.. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk.  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development. .  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 MB and Bruce,My suspicion about the walk is that he saw something on the PFT and evaluated my lack of need for O2 when sitting quietly and maybe saw something and wanted a short walk to confirm it---I don't know what else to think.  As I said in my original post, I am in shock--pity my pulmo when I see him.  I've started a list.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough..... From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM  Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2.... like a stone. I'm worried that yours did that with oxygen.  You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk.  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Pink Normal is that they switch to oxygen and up it when necessary. Most only walk me with oxygen but last one that wanted to start without, I wore the oxygen and as it dropped, I turned the oxygen on. I will be out of the 90's in less than 20 feet and to 80 within less than 30 seconds without oxygen, so I have to be ready to juice up quickly. > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: Visit to MUSC > To: Breathe-Support@ yahoogroups. com > Date: Tuesday, January 12, 2010, 8:21 PM > > >  > > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. >  > You are in my thoughts and prayers. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > >  > > > > > > Hi all, > I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. >  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Roxanne Great questions. PH does make your mind go blank and all one can do is hurry to get the testing done. All the time you'll hope you don't have it, but understand that if you do have it, there are meds for it. In terms of cause and effect the sarcoid remains primary. However, in terms of of urgency of attention the PH would be the most critical and then the organs the sarcoid was most impacting, in your case probably the lungs. That doesn't mean the sarcoid isn't still important, but it means PH always elevates to great attention when any fear of it so it can be addressed before it really takes off. Doesn't mean however to then ignore others. I've got a very simple personal comparison. My lungs are my most critical situation. But my kidneys are functionally about the same level as my lungs. It's just they seem to have been stable for a while and at this rate unlikely to expire before my lungs. So, while I monitor them regularly my concentration is on my fibrosis. If we could figure out a connective tissue disease was impacting both then its treatment would jump and it might become the primary disease causing all the other situations. If my lymph nodes suddenly flared and lymphoma became an issue then it would probably take the lead. And, after my echo showed likely PH, PH became my biggest concern, until I had the catheter and it was ok. > > > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale > > for stopping the treatment for the sarcoid..... I mean I completely > > get checking for PH, as untreated it will kill you faster than > > fibrosis or sarcoid but I'm confused about stopping the sarcoid > > treatment. Maybe he thinks the sarcoid is dormant right now? That > > must be it and your sob he suspects is actually caused by ph.. > > > Sorry I'm kind of thinking out loud, you must be reeling a bit > > from this. Please let us know what his full report says. I'm > > most interested. When you did the 6 minute walk and you dropped to > > 81 was that with oxygen or without oxygen? Mine drop like that if I > > try to walk without O2...like a stone. I'm worried that yours did > > that with oxygen. > > > > > > You are in my thoughts and prayers. > > >  > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >  > > >  > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Roxanne Wooten t.rox1@ > > > To: Breathe-support@ yahoogroups. com > > > Sent: Tue, January 12, 2010 8:06:29 PM > > > Subject: Visit to MUSC > > > > > >  > > > Hi all, > > > I've just returned from a very long day in ton SC at the ILD > > center.  I was originally referred to Dr. Marc Judson who is the > > head of the department and also a specialist in sarcoidosis. > > > I took all the standard tests---blood workup---6 min walk, PFT, and > > xray.  We went over my life history and he reviewed the tests and > > reports sent to him from all my other doctors and the new tests.  > > I'm in a state of shock--he told me that he recommends stopping all > > treatment for sarcoid!  Apparently, he doesn't think the sarcoid is > > what we should be worrying about at this point. He affirmed the > > probability that the sarcoid caused the fibrosis.  He suspects I now > > have pulmonary hypertension and will recommend to my current pulmo that > > he get another echo and right heart cath right away. Did I say shock? > >  I'm still trying to digest it.. I should have a written copy of his > > report in a couple of days and will know all the numbers and such. I can > > tell you that I walked about 80 feet and my sats dropped from 94 to 81 > > at which time they stopped my walk. > > >  I will call my pulmo tomorrow and see if he wants to see me > > earlier than my appointment in March.  I'm not sure if this is a > > positive or negative development.  I do know that I'll be glad to > > give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > > > > > Roxanne, 59, South Carolina > > > 2006 Asthma/ PF > > > 2008 PF/ Sarcoidosis/ Gerd > > > I pray you enough..... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Roxanne Could have been his " walk in support of prescribing oxygen " . This would keep it on record for insurance purposes. > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: Visit to MUSC > To: Breathe-Support@ yahoogroups. com > Date: Tuesday, January 12, 2010, 8:21 PM > > >  > > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. >  > You are in my thoughts and prayers. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > >  > > > > > > Hi all, > I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. >  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Bruce, Just curious when were you first diagnosed and was your very first diagnosis IPF and then did you develop the PH quite awhile later? Do you have other complications and is your reduced kidney function also a direct result of the fibrosis? You and Beth are both a world of knowledge and I appreciate that so much. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 mb that's what i thought the o2 is ready to use as soon as you need it during the walk Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 10:11 AM PinkNormal is that they switch to oxygen and up it when necessary. Most onlywalk me with oxygen but last one that wanted to start without, I worethe oxygen and as it dropped, I turned the oxygen on. I will be out ofthe 90's in less than 20 feet and to 80 within less than 30 secondswithout oxygen, so I have to be ready to juice up quickly.>>> From: Beth mbmurtha (AT) yahoo (DOT) com>> Subject: Re: Visit to MUSC> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, January 12, 2010, 8:21 PM>>> Â>>>>> Wow Roxanne that is shocking. I'm trying to understand the rationalefor stopping the treatment for the sarcoid..... I mean I completelyÂget checking for PH, as untreated it will kill you faster thanfibrosis or sarcoid but I'm confused about stopping the sarcoidtreatment. Maybe he thinks the sarcoid is dormant right now? Thatmust be it and your sob he suspects is actually caused by ph.> Sorry I'm kind of thinking out loud, you must be reeling a bitfrom this. Please let us know what his full report says. I'mmost interested. When you did the 6 minute walk and you dropped to81 was that with oxygen or without oxygen? Mine drop like that if Itry to walk without O2... like a stone. I'm worried that yours didthat with oxygen.> Â> You are in my thoughts and prayers.> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com>> To: Breathe-support@ yahoogroups. com> Sent: Tue, January 12, 2010 8:06:29 PM> Subject: Visit to MUSC>> Â>>>>>> Hi all,> I've just returned from a very long day in ton SC at the ILDcenter.  I was originally referred to Dr. Marc Judson who is thehead of the department and also a specialist in sarcoidosis.> I took all the standard tests---blood workup---6 min walk, PFT, andxray.  We went over my life history and he reviewed the tests andreports sent to him from all my other doctors and the new tests. ÂI'm in a state of shock--he told me that he recommends stopping alltreatment for sarcoid!  Apparently, he doesn't think the sarcoid iswhat we should be worrying about at this point. He affirmed theprobability that the sarcoid caused the fibrosis.  He suspects I nowhave pulmonary hypertension and will recommend to my current pulmo thathe get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of hisreport in a couple of days and will know all the numbers and such. I cantell you that I walked about 80 feet and my sats dropped from 94 to 81at which time they stopped my walk.Â>  I will call my pulmo tomorrow and see if he wants to see meearlier than my appointment in March.  I'm not sure if this is apositive or negative development.  I do know that I'll be glad togive up prednisone, plaquenil, methotrexate and quarterly gallium scans!>> Roxanne, 59, South Carolina> 2006 Asthma/ PF> 2008 PF/ Sarcoidosis/ Gerd> I pray you enough.....> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 oops, it was Bruce who responded i was just filing my 6 min walk and pfts comparing 6 min walks -- in sept, sats were in high 90s in Dec, sats were in mid to low 90s but i walked an additional 40 feet with lower sats pfts -- one number goes up, another number goes down, hence, still in the stables wonder if this bronchitis affected my disease Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 10:11 AM PinkNormal is that they switch to oxygen and up it when necessary. Most onlywalk me with oxygen but last one that wanted to start without, I worethe oxygen and as it dropped, I turned the oxygen on. I will be out ofthe 90's in less than 20 feet and to 80 within less than 30 secondswithout oxygen, so I have to be ready to juice up quickly.>>> From: Beth mbmurtha (AT) yahoo (DOT) com>> Subject: Re: Visit to MUSC> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, January 12, 2010, 8:21 PM>>> Â>>>>> Wow Roxanne that is shocking. I'm trying to understand the rationalefor stopping the treatment for the sarcoid..... I mean I completelyÂget checking for PH, as untreated it will kill you faster thanfibrosis or sarcoid but I'm confused about stopping the sarcoidtreatment. Maybe he thinks the sarcoid is dormant right now? Thatmust be it and your sob he suspects is actually caused by ph.> Sorry I'm kind of thinking out loud, you must be reeling a bitfrom this. Please let us know what his full report says. I'mmost interested. When you did the 6 minute walk and you dropped to81 was that with oxygen or without oxygen? Mine drop like that if Itry to walk without O2... like a stone. I'm worried that yours didthat with oxygen.> Â> You are in my thoughts and prayers.> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com>> To: Breathe-support@ yahoogroups. com> Sent: Tue, January 12, 2010 8:06:29 PM> Subject: Visit to MUSC>> Â>>>>>> Hi all,> I've just returned from a very long day in ton SC at the ILDcenter.  I was originally referred to Dr. Marc Judson who is thehead of the department and also a specialist in sarcoidosis.> I took all the standard tests---blood workup---6 min walk, PFT, andxray.  We went over my life history and he reviewed the tests andreports sent to him from all my other doctors and the new tests. ÂI'm in a state of shock--he told me that he recommends stopping alltreatment for sarcoid!  Apparently, he doesn't think the sarcoid iswhat we should be worrying about at this point. He affirmed theprobability that the sarcoid caused the fibrosis.  He suspects I nowhave pulmonary hypertension and will recommend to my current pulmo thathe get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of hisreport in a couple of days and will know all the numbers and such. I cantell you that I walked about 80 feet and my sats dropped from 94 to 81at which time they stopped my walk.Â>  I will call my pulmo tomorrow and see if he wants to see meearlier than my appointment in March.  I'm not sure if this is apositive or negative development.  I do know that I'll be glad togive up prednisone, plaquenil, methotrexate and quarterly gallium scans!>> Roxanne, 59, South Carolina> 2006 Asthma/ PF> 2008 PF/ Sarcoidosis/ Gerd> I pray you enough.....> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 One does wonder about the rationale at times. I’m currently in the process of trying to switch from MUSC to the Mayo Clinic in ville, FL since it’s closer to where I live. I’ve spent the past two weeks going through the battery of tests that each new pulmonologist seems to have to have. Nothing really unusual about any of it until I got to the six minute walk. Mine consisted of sitting at 6 liters for 10 minutes, then doing the walk at that flow level. Since I am on oxygen only for exertion at 3-4 liters, this 6 min walk didn’t make any sense to me at all. Bob Dopher 67 IPF 04/07 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Beth Sent: Wednesday, January 13, 2010 8:02 AM To: Breathe-Support Subject: Re: Visit to MUSC Roxanne, Well now I'm even more confused. I don't understand why they stopped your walk as opposed to just giving you oxygen and since you know the Sarcoid is still active I don't understand why they stopped the treatment. Why not add the PH treatment to the regimen? But then I'm not a doctor and he must have a rationale for what he's doing. The PH is definitely most urgent. I second Bruce's urging to be evaluated post haste so that treatment can begin. Please keep us posted and you are in my prayers! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten To: Breathe-Support Sent: Tue, January 12, 2010 8:53:32 PM Subject: Re: Visit to MUSC Thanks MB. My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now. Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/ Gerd I pray you enough...... From: Beth <mbmurtha (AT) yahoo (DOT) com> Subject: Re: Visit to MUSC To: Breathe-Support@ yahoogroups. com Date: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com> To: Breathe-support@ yahoogroups. com Sent: Tue, January 12, 2010 8:06:29 PM Subject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/ Gerd I pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Bob you could have insisted that the 6 min walk be at 3 or 4 liters they used to want me to use o2 during the walk since the previous walks i didn't use o2, i insisted on not using o2, it was there if needed you need to compare apples to apples, you can't compare apples to oranges this is an instance where you have to tell them you know your body, they just have to document what is happening with your body Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: RE: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 11:04 AM One does wonder about the rationale at times. I’m currently in the process of trying to switch from MUSC to the Mayo Clinic in ville, FL since it’s closer to where I live. I’ve spent the past two weeks going through the battery of tests that each new pulmonologist seems to have to have. Nothing really unusual about any of it until I got to the six minute walk. Mine consisted of sitting at 6 liters for 10 minutes, then doing the walk at that flow level. Since I am on oxygen only for exertion at 3-4 liters, this 6 min walk didn’t make any sense to me at all. Bob Dopher 67 IPF 04/07 From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Wednesday, January 13, 2010 8:02 AMTo: Breathe-Support@ yahoogroups. comSubject: Re: Visit to MUSC Roxanne, Well now I'm even more confused. I don't understand why they stopped your walk as opposed to just giving you oxygen and since you know the Sarcoid is still active I don't understand why they stopped the treatment. Why not add the PH treatment to the regimen? But then I'm not a doctor and he must have a rationale for what he's doing. The PH is definitely most urgent. I second Bruce's urging to be evaluated post haste so that treatment can begin. Please keep us posted and you are in my prayers! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 12, 2010 8:53:32 PMSubject: Re: Visit to MUSC Thanks MB. My walk was without O2; guess that's why they stopped it so quickly! I'm sure my sarcoid is still active because of the gallium scan I had in December. It still shows up in lacrimal, salivary glands, nose and lungs. My husband who went with me says he felt like Dr Judson indicated that the PH was a more immediate problem right now.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. You are in my thoughts and prayers. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC Hi all, I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Patti Mine is quite complicated. Early 2006, my counselor insisted the doctors were missing something so lots of pursuits down neurological path were underway. I knew at minimum i had peripheral neuropathy and balance and gait issues and sleep disorder. But I'd had serious gerd and esophagus problems and swallowing issues so after lots of endoscopies, it was actually my neurologist who insisted to my gastroenterologist that I have CT's to look for any external causes on my esophagus. The esophagus issues had been treated for several years as well as a Colon resection in 2005 for a precancerous tumor and continued monitoring for cholesteotoma which led to two tympanoplasty with mastoidectomies (ear) in 1997 and 1998. June, 2007, CT's of chest and neck revealed swollen lymph nodes. Too many to count in neck and some larger ones in chest. They also revealed that I had Interstitial Lung Disease but no one looked at or mentioned that except the radiologist. Meanwhile, oncologist and I decide to just watch the lymph nodes with follow up CT's. Now, I see primary and have been complaining since early 2006 that I just couldn't exercise. He attributed it to old and out of shape. Also, I had a severe chronic sinus condition and allergies and hay fever contributing. But I told him no. That I had three times that was far beyond any of that. Three times I did something and thought I'd never get my breath again. I just had to lay in the floor and hope each time and wait. Now I know my saturations were in the 50's or 60's those times based on gaining future understanding of how it feels. So he does a six minute walk. Typical slow walk around office with his nurse expecting nothing, no steps or anything, and...... She tells him the results. He says " thats worse than I would have expected " . From there to quick referral to pulmonologist to does PFT's and HRCT's including on inspiration and expiration. Diagnosis ILD, probably UIP. This is now August 2007. Oxygen ordered, overnight oximeter ordered and oxygen needed for night too. October 2007, VATS. Confirmed UIP in spite of several atypical things. Meanwhile had had many connective tissue tests but none felt to show anything. Oh, as to kidneys, they were around 60% in 1997 so got them checked and now closer to 40% and remaining fairly stable but monitored every three months or more. April 2008, University of Chicago. Dr. strongly suspects connective tissue and even NSIP but working with pathologist is back to absolute conclusion its UIP even if some atypical on CT. This made third review of the biopsy slides. Dr. there says based on many factors, she believes underlying connective tissue disease such as undifferentiated connective tissue disease or polymyositis. Come home and to new highly rated rheumatologist who works and works to find all sorts of signs of things out of range but nothing to diagnose a connective tissue disease. He came close a couple of times. Sent me to oncologist for three different cancers (nothing found). Sent me to two neurologists and nothing found. Sent me to another rheumatologist and now he wants me to go to another. Meanwhile echocardiograms indicate possible PH so I go to UTSW and get checked further including right heart catheter, VQ, and cardiac MRI. Conclusion, no PH at this point but right ventricle is severely dilated and other parts are moderately so with some regurgitation. So come back in six months (March). Meanwhile, I start making appointments at Duke to review it all and follow through on Rheumatologists desire. Oh at various times he has suspected Lupus (wants kidney biopsy to check for that) Polymyositis, Dermatomyositis, Sarcoidosis, Scleroderma. So heading off to Duke soon for one or two trips there. Total conditions then as of today: 1-UIP 2-Possible connective tissue so undifferentiated connective tissue 3-Renal Insuffiency 4-Hearing loss from surgeries and disease 5-Tinnitus 6-Mild Vertigo 7-Hay Fever 8-Allergies 9-Chronic Sinus disorder 10-Deviated septum 11-Weak lower esophagus 12-GERD 13-Globus/Tight upper esophagus 14-Swollen lymph nodes 15-Vision problems 16-Peripheral Neuropathy 17-Balance and Gait problems 18-Abnormal Pain responses (lack of response) 19-Sleep disorder 20-Low vitamin D 21-Elevated homocysteine level 22-Foot problem-probably plantar faciatis 23-Severe skin problems and itching 24-Damage to right ventricle due to UIP 25-Prior precancerous colon tumor so monitoring oh and mainly managed by counseling we can add in 26-Chronic Depression 27-Anxiety 28-Social Anxiety 29-Panic Disorder 30-Obsessive Compulsive Personality Disorder (not obsessive compulsive disorder-this one is more perfectionism type thing). Thats all I can think of now. Sounds awful but really doing quite fine. New doctor got my records before seeing me and thought I would need assistance just getting around the office. Ultimately she said, you're doing fine. You're really doing quite well. Not what I would have expected (she was a neurologist). As to all the conditions, I'm not worrying about them right now. The itching is top on my list today. But off to Duke soon and see if any new findings or conclusions. > > Bruce, > Just curious when were you first diagnosed and was your very first diagnosis IPF and then did you develop the PH quite awhile later? Do you have other complications and is your reduced kidney function also a direct result of the fibrosis? > > You and Beth are both a world of knowledge and I appreciate that so much. > > Patti > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Pink Well, that and that you walked faster so sats were down some. Thats the whole thing that annoys me about the walk, I can change the sats based on how fast I go. > > > > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > > Subject: Re: Visit to MUSC > > To: Breathe-Support@ yahoogroups. com > > Date: Tuesday, January 12, 2010, 8:21 PM > > > > > >  > > > > > > > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale > for stopping the treatment for the sarcoid..... I mean I completely > get checking for PH, as untreated it will kill you faster than > fibrosis or sarcoid but I'm confused about stopping the sarcoid > treatment. Maybe he thinks the sarcoid is dormant right now? That > must be it and your sob he suspects is actually caused by ph. > > Sorry I'm kind of thinking out loud, you must be reeling a bit > from this. Please let us know what his full report says. I'm > most interested. When you did the 6 minute walk and you dropped to > 81 was that with oxygen or without oxygen? Mine drop like that if I > try to walk without O2... like a stone. I'm worried that yours did > that with oxygen. > >  > > You are in my thoughts and prayers. > >  > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > >  > >  > > > > > > > > > > > > > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > > To: Breathe-support@ yahoogroups. com > > Sent: Tue, January 12, 2010 8:06:29 PM > > Subject: Visit to MUSC > > > >  > > > > > > > > > > > > Hi all, > > I've just returned from a very long day in ton SC at the ILD > center.  I was originally referred to Dr. Marc Judson who is the > head of the department and also a specialist in sarcoidosis. > > I took all the standard tests---blood workup---6 min walk, PFT, and > xray.  We went over my life history and he reviewed the tests and > reports sent to him from all my other doctors and the new tests.  > I'm in a state of shock--he told me that he recommends stopping all > treatment for sarcoid!  Apparently, he doesn't think the sarcoid is > what we should be worrying about at this point. He affirmed the > probability that the sarcoid caused the fibrosis.  He suspects I now > have pulmonary hypertension and will recommend to my current pulmo that > he get another echo and right heart cath right away. Did I say shock? >  I'm still trying to digest it.. I should have a written copy of his > report in a couple of days and will know all the numbers and such. I can > tell you that I walked about 80 feet and my sats dropped from 94 to 81 > at which time they stopped my walk. > >  I will call my pulmo tomorrow and see if he wants to see me > earlier than my appointment in March.  I'm not sure if this is a > positive or negative development.  I do know that I'll be glad to > give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > > > Roxanne, 59, South Carolina > > 2006 Asthma/ PF > > 2008 PF/ Sarcoidosis/ Gerd > > I pray you enough..... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Bob He wanted to see if with enough boost you could fly. He's one of the Brothers. > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: Visit to MUSC > To: Breathe-Support@ yahoogroups. com > Date: Tuesday, January 12, 2010, 8:21 PM > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. > > > > You are in my thoughts and prayers. > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > _____ > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > > > > > Hi all, > > I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > > I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. > > I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Pink I don't like the six minute walk now, although I feel strongly it should be a part of the annual physical for everyone. But I know now how I can walk and how much oxygen I need and don't need a walk to figure it out. My regular pulmonologist doesn't have me do any but Chicago and UTSW and such do. > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: Visit to MUSC > To: Breathe-Support@ yahoogroups. com > Date: Tuesday, January 12, 2010, 8:21 PM > >  > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. > >  > > You are in my thoughts and prayers. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > >  > >  > > > > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > >  > > > > > > Hi all, > > I've just returned from a very long day in ton SC at the ILD center.  I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > > I took all the standard tests---blood workup---6 min walk, PFT, and xray.  We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests.  I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid!  Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis.  He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock?  I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. > >  I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March.  I'm not sure if this is a positive or negative development.  I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hadn’t considered that possibility…. From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Bruce Sent: Wednesday, January 13, 2010 11:18 AM To: Breathe-Support Subject: Re: Visit to MUSC Bob He wanted to see if with enough boost you could fly. He's one of the Brothers. > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: Re: Visit to MUSC > To: Breathe-Support@ yahoogroups. com > Date: Tuesday, January 12, 2010, 8:21 PM > > > > Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph. > > Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen. > > > > You are in my thoughts and prayers. > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > _____ > > From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com> > To: Breathe-support@ yahoogroups. com > Sent: Tue, January 12, 2010 8:06:29 PM > Subject: Visit to MUSC > > > > > Hi all, > > I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis. > > I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk. > > I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans! > > Roxanne, 59, South Carolina > 2006 Asthma/ PF > 2008 PF/ Sarcoidosis/ Gerd > I pray you enough..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hey watch the brothers talk.... be nice they were my Grandmothers cousins..lol Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Bob, So how did your saturation hold up on the walk at 6L ? Last night I was sitting here just watching TV hating the hurricane blowing up my nose so I had turn it down to between 3 & 4 L. and if I sat very still I stayed 92 or 93.. I am going to become a very quiet person just to give my nose a break. I have a bit of a sore throat and my ears are hurting a little so I need the break. As long as I'm not blue I'm good to go. lol Hang in there. enjoy the days while you can still get out and around this house sitting is a huge pain in the booota Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.