Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Hi ,It only gets to me when I feel my heart acting up. Otherwise, I put it out ofmind. The thing about heart (and lung) involvement is that it is so "there" whenit causes problems. Even so, I say a prayer and move on. My EF (1 yr ago) was52% which is the low end of normal...they are going to do another echo thisweek. My main diagnostic confirmation was arrhythmias (esp when trying to lowerthe prednisone), and the 2 thallium cardiac stress tests that showed a patchyuptake during rest (VERY clinically significant for sarcoid inflammation) andexercise. My s Hopkins physician at the Sarcoidosis Clinic looked at mytests and confirmed cardiac sarcoid. I take atenolol and vasotec and alsoprednisone and cellcept along with many other meds. The cellcept doesn't botherme at all. The pred of course has many side effects. Always feel free to ask meanything...you are not being nosey...we're all here to help and share.Blessings, Ramblin' Rose Moderator The average US Credit Score is 675. The cost to see yours: $0 by Experian. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 This is weird. I sent this message and it came back as undeliverable...then I just got this. This is from me to .Blessings,BeckyNote: forwarded message attached. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Hi ,It only gets to me when I feel my heart acting up. Otherwise, I put it out ofmind. The thing about heart (and lung) involvement is that it is so "there" whenit causes problems. Even so, I say a prayer and move on. My EF (1 yr ago) was52% which is the low end of normal...they are going to do another echo thisweek. My main diagnostic confirmation was arrhythmias (esp when trying to lowerthe prednisone), and the 2 thallium cardiac stress tests that showed a patchyuptake during rest (VERY clinically significant for sarcoid inflammation) andexercise. My s Hopkins physician at the Sarcoidosis Clinic looked at mytests and confirmed cardiac sarcoid. I take atenolol and vasotec and alsoprednisone and cellcept along with many other meds. The cellcept doesn't botherme at all. The pred of course has many side effects. Always feel free to ask meanything...you are not being nosey...we're all here to help and share.Blessings, Ramblin' Rose Moderator The average US Credit Score is 675. The cost to see yours: $0 by Experian. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Becky, it came to the moderators as undeliverable, so I copied & pasted your message & sent it on to the group. Hope that was okay. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Fwd: cardiac sarcDate: Mon, 16 Apr 2007 14:52:55 -0700 (PDT) This is weird. I sent this message and it came back as undeliverable...then I just got this. This is from me to .Blessings,BeckyNote: forwarded message attached. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: cardiac sarcDate: Mon, 16 Apr 2007 16:01:39 -0500 Hi ,It only gets to me when I feel my heart acting up. Otherwise, I put it out ofmind. The thing about heart (and lung) involvement is that it is so "there" whenit causes problems. Even so, I say a prayer and move on. My EF (1 yr ago) was52% which is the low end of normal...they are going to do another echo thisweek. My main diagnostic confirmation was arrhythmias (esp when trying to lowerthe prednisone), and the 2 thallium cardiac stress tests that showed a patchyuptake during rest (VERY clinically significant for sarcoid inflammation) andexercise. My s Hopkins physician at the Sarcoidosis Clinic looked at mytests and confirmed cardiac sarcoid. I take atenolol and vasotec and alsoprednisone and cellcept along with many other meds. The cellcept doesn't botherme at all. The pred of course has many side effects. Always feel free to ask meanything...you are not being nosey...we're all here to help and share.Blessings, Ramblin' Rose Moderator The average US Credit Score is 675. The cost to see yours: $0 by Experian. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Absolutely Rose...thank you.Blessings,BeckyRose wrote: Becky, it came to the moderators as undeliverable, so I copied & pasted your message & sent it on to the group. Hope that was okay. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Fwd: cardiac sarcDate: Mon, 16 Apr 2007 14:52:55 -0700 (PDT) This is weird. I sent this message and it came back as undeliverable...then I just got this. This is from me to .Blessings,BeckyNote: forwarded message attached. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. From: "Rose " <mamadogrose (AT) hotmail (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: cardiac sarcDate: Mon, 16 Apr 2007 16:01:39 -0500 Hi ,It only gets to me when I feel my heart acting up. Otherwise, I put it out ofmind. The thing about heart (and lung) involvement is that it is so "there" whenit causes problems. Even so, I say a prayer and move on. My EF (1 yr ago) was52% which is the low end of normal...they are going to do another echo thisweek. My main diagnostic confirmation was arrhythmias (esp when trying to lowerthe prednisone), and the 2 thallium cardiac stress tests that showed a patchyuptake during rest (VERY clinically significant for sarcoid inflammation) andexercise. My s Hopkins physician at the Sarcoidosis Clinic looked at mytests and confirmed cardiac sarcoid. I take atenolol and vasotec and alsoprednisone and cellcept along with many other meds. The cellcept doesn't botherme at all. The pred of course has many side effects. Always feel free to ask meanything...you are not being nosey...we're all here to help and share.Blessings, Ramblin' Rose Moderator The average US Credit Score is 675. The cost to see yours: $0 by Experian. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
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