tag:blogger.com,1999:blog-7924439865196022375.post1815393741325295866..comments2024-03-28T03:16:58.351-04:00Comments on A Matter of Life and Breath: Everything You Ever Wanted to Know about My Lungs (But Were Afraid to Ask)Piperhttp://www.blogger.com/profile/01992462169607238118noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-7924439865196022375.post-60310092258147963102009-08-04T18:09:05.739-04:002009-08-04T18:09:05.739-04:00I answered your question under the comments Piper!...I answered your question under the comments Piper! Some other might find the info useful, otherwise I would have just emailed you.<br /><br />RonnieAnonymoushttps://www.blogger.com/profile/06849674714471543078noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-23749509975310004592009-08-04T12:22:11.574-04:002009-08-04T12:22:11.574-04:00Might sound like a shitty way to go but I hope its...Might sound like a shitty way to go but I hope its the port and you can get it removed, clear the fevers, feel normal and then get another one in the other arm :)<br /><br />Sending vibes up to NYC from Philly :)Amyhttps://www.blogger.com/profile/12354849302798817593noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-73056267792642537112009-08-04T09:57:03.064-04:002009-08-04T09:57:03.064-04:00Can we be anymore alike??? My PFTs were up when I ...Can we be anymore alike??? My PFTs were up when I went in the hospital and I was having fevers of 102+. We knew it wasn't because of a PICC or Port because I didn't have one. I am on my last few doses of IV antibiotics and guess what...fevers again. I hate this cycle. My thoughts are with you.<br />Hugs,<br />StephanieCFstephhttps://www.blogger.com/profile/12808675789017622773noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-32639015416248520052009-08-04T01:26:08.404-04:002009-08-04T01:26:08.404-04:00I wish I had something more constructive to say. I...I wish I had something more constructive to say. I don't. But I wanted to leave a comment anyway, because I wanted you to know I'm thinkin' of ya and always look forward to your blog posts, be they happy, sad, frustrated, poetic...; I like 'em any which way you deal 'em!whatsherfacehttps://www.blogger.com/profile/02767972427264230975noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-61620548474097524952009-08-04T01:20:39.646-04:002009-08-04T01:20:39.646-04:00Hi -- de-lurking to (and, oh, I really hope this i...Hi -- de-lurking to (and, oh, I really hope this isn't too annoying or creepy) say, first, I'm so sorry you're feeling crappy, it sounds like it has be a hell of a year health wise (to put it lightly) and, well, I hope you start to feel better soon. <br /><br />And, second, have they tested for EBV? I'm sure they have; your docs sound great. The reason I ask is that Will, my partner, who also has CF and is post tx had a number of the same types of symptoms post tx (fevers that wouldn't go away, body aches all over, enlarged spleen) and they turned out to be a run away EBV infection. It was the enlarged spleen that really got me thinking about it, since that is common with EBV. (We watch EBV really closly since those infections have a direct correlation with Will's two bouts of PTLD and one bout of Hodgkin's lymphoma, but I think the cancer/EBV connection is strictly a transplant-related thing owing to the new lungs being EBV positive for EBV antibodies when Will didn't have any EBV antibodies pre tx.) So, sorry if this has offended in any way and really don't mean to meddle, just to offer this experience in case it helps in any way. Best,<br />ElizabethElizabethhttps://www.blogger.com/profile/13523429512301405181noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-50003997556458698382009-08-03T23:00:57.769-04:002009-08-03T23:00:57.769-04:00Wow Piper! I wish you were feeling better and rid...Wow Piper! I wish you were feeling better and rid of the fevers. It sounds like your doctor is totally awesome and 250% on top of things... as are you of course!!! I hope you can avoid lockup and if it is the port that's causing the issues that you'll bounce back lickedy split! <br /><br />And hey, no need to apologize for your blog tone or lack of posting or anything. Don't go adding any sense of obligation on yourself or anything silly like that. We luv you just the way you are! It's the real PIPER package! :D {{Hugs}} ~JulietJuliet Pagenoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-37146473263618737962009-08-03T21:32:53.686-04:002009-08-03T21:32:53.686-04:00Man you have a lot going on! I would kill for 97% ...Man you have a lot going on! I would kill for 97% on room air, so keep up whatever you're doing :) That stinks about a possible port removal....could your body be attacking? Is it possible to reject a port? I know literally nothing about them. <br /><br />I'll be thinking of you.<br /><br />RonnieAnonymoushttps://www.blogger.com/profile/06849674714471543078noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-26460472266935622712009-08-03T20:21:01.074-04:002009-08-03T20:21:01.074-04:00Hang in there Cyster! 97% pulse ox! Sweet!Hang in there Cyster! 97% pulse ox! Sweet!Heidihttps://www.blogger.com/profile/07791278701579085418noreply@blogger.com