tag:blogger.com,1999:blog-7924439865196022375.post4554904385773923252..comments2024-03-28T03:16:58.351-04:00Comments on A Matter of Life and Breath: Here's The Tricky PartPiperhttp://www.blogger.com/profile/01992462169607238118noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-7924439865196022375.post-1263607784127976932010-06-30T14:41:25.090-04:002010-06-30T14:41:25.090-04:00Another great post! Thank you so much for sharing ...Another great post! Thank you so much for sharing ALL the things that one might experience after transplant. It is so helpful to those of us on the other side still facing the process. You are a great example of rolling with the punches!Debbiehttps://www.blogger.com/profile/13719508133174812581noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-65793716504595596692010-06-30T14:22:45.915-04:002010-06-30T14:22:45.915-04:00Yay for 45%! You are doing so awesome! I love your...Yay for 45%! You are doing so awesome! I love your positive attitude! Your totally inspiring!Lydia Russellhttps://www.blogger.com/profile/15185110070411224807noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-44070379974631719892010-06-30T12:13:26.286-04:002010-06-30T12:13:26.286-04:0045% WOO HOO!!! Prednisone sucks but you're a p...45% WOO HOO!!! Prednisone sucks but you're a pro at it by this time so I'm sure you can pull through it.Stephanie aka PinkPigghttps://www.blogger.com/profile/10335686929376267791noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-79226843652927958222010-06-29T10:46:55.029-04:002010-06-29T10:46:55.029-04:00oh wow. my bad run this morning and melt down is ...oh wow. my bad run this morning and melt down is nothing compared to what you are going through...and with a good attitude and gratitude. I'm going to go be thankful now. Thanks for the positive inspiration and sharing your storyChristinahttps://www.blogger.com/profile/02527827359630897863noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-65149995126050672222010-06-29T00:49:01.944-04:002010-06-29T00:49:01.944-04:00Congrats on the PFTs Piper!! I'm looking forw...Congrats on the PFTs Piper!! I'm looking forward to upwards climbing numbers. :) I hope the pred burst helps the inflammation and you find the extra awake-time helpful to get better acquainted with your new lungs and all the stuff you weren't able, didn't feel like or didn't get around to do pre-Tx! :) ~JulietJuliet Pagenoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-7715940700108468662010-06-28T20:56:27.038-04:002010-06-28T20:56:27.038-04:00True confession, P. I am sort of full of anxiety n...True confession, P. I am sort of full of anxiety now so I only skimmed this post, but from what I saw, you are still the Trooper of us all. Sigh. I will read the rest tomorrow, I swear!!Cystic Galhttps://www.blogger.com/profile/11917081885417514672noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-87541469294369968222010-06-28T19:28:46.549-04:002010-06-28T19:28:46.549-04:0045% 2 weeks out???? Holy cow, that's amazing!!...45% 2 weeks out???? Holy cow, that's amazing!!! You will be seeing 100% before you even know it! Way to go!!!<br /><br />Glad you didn't freak out about the rejection. No biggie as you already know!! :) That pred burst will take care of it and your pfts definitely aren't reflecting it!!!<br /><br />I don't remember my first clinic post-tx.. been years, but I'm sure I was overwhelmed as well. Duke does a lipid panel at my yearly check up (where you have to hold off on eating until after blood draw), but other than that (unless they are doing a bronch or other NPO procedure) you should be fine eating beforehand. <br /><br />Definitely a BIG welcome to the wonderful world of post-tx. It does come with complications, but nothing like coughing and hacking and nebs and O2. :) <br /><br />You are doing AMAZING!!!Christyhttps://www.blogger.com/profile/07257412116217529657noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-26616849761070649752010-06-28T16:39:20.054-04:002010-06-28T16:39:20.054-04:00Thanks so much for that update. You have a way of ...Thanks so much for that update. You have a way of describing things that makes me feel like I'm right there with you.<br /><br />Btw, what was your pre-op FEV1? <br /><br />I'm not a CF'er, but I do have end-stage severe asthma. My baseline FEV1 is generally in the mid 30's to low 40's, so I kinda have an idea of what your breathing must feel like at 45%.<br /><br />Anyways, so glad to hear that you're doing so well.It's incredible how fast you are progressing.Stevehttp://breathinstephen.comnoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-36051896500990061362010-06-28T16:16:21.800-04:002010-06-28T16:16:21.800-04:00i love reading your blog piper. i don't alway...i love reading your blog piper. i don't always get a chance to comment, but every post reminds me of the emotions and thoughts that are still so fresh in my mind. i'm going through A2 rejection. i'm not freaking either, but would rather it just not be there! haha.<br /><br />45%!!!!!!!! that's awesome for such new lungs! i wasn't even allowed (or wanted) to do PFTs at that point!!! <br />don't you just want to frame the piece of paper that says your lungs are at <b>45%</b>!!!!!! wooooooo!!!!!<br /><br />i am so happy for you! i am glad you are home, and navigating through clinics. stanford's clinic sounds identical to the one there (walk in labs, xray, pfts) all that.<br /><br />hope you get some sleep! xanax turned out to be the only thing to help me sleep. sleeping pills did nothing for me, in fact i think they actually made it worse. hope you figure out what works for you!Leahhttps://www.blogger.com/profile/14573039464323432652noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-43095201739552615172010-06-28T16:06:31.958-04:002010-06-28T16:06:31.958-04:00It's a little overwhelming at first, for sure!...It's a little overwhelming at first, for sure! I, nor I'm sure my mom and Mike, will ever forget my breakdown about 12 days after tx in Denny's. lol!<br /><br />My first tx clinic was much the same way... long, tiring, I was hungry, what test now, my back hurt.. but it gets better so quickly and seeing those #'s is a serious rush!!!<br /><br />Continued good thoughts coming your way! ... and yes, welcome to the "club!" ha!OceanDeserthttps://www.blogger.com/profile/03047791019620622430noreply@blogger.com