tag:blogger.com,1999:blog-4319729538321932951.comments2012-02-22T10:42:42.490-03:30A Walk In My Not-So-New ShoesKelly's Venturehttp://www.blogger.com/profile/07517329524058561154noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-4319729538321932951.post-11561561616767885302012-02-22T10:42:42.490-03:302012-02-22T10:42:42.490-03:30I LOVE it!!!I LOVE it!!!Staceyhttps://www.blogger.com/profile/08558341367213981372noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-60652436830992109642011-04-27T15:30:28.552-02:302011-04-27T15:30:28.552-02:30Kelly thank you so much for this post - it really ...Kelly thank you so much for this post - it really is true and it is very meaningful. I had my follow up at the UPenn transplant center yesterday and it looks like things are going to start rolling along soon - I should be listed in the next couple of months and the doc said that I won't have to wait more than 12 months. Just the thought of being able to breathe again makes my eyes tear. Thanks for the post.Betony ZGhttps://www.blogger.com/profile/06443749681060977357noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-63442742947153664952011-03-22T16:46:01.861-02:302011-03-22T16:46:01.861-02:30I'm only just developing a "CF" coug...I'm only just developing a "CF" cough... before, it was pretty much non-existent. But I am 30. And up to this point, CF hasn't affected me all that badly. For that I am grateful. But now comes some scary realizations... One night recently I was gasping, lips turning blue, could NOT get any air. It was FRIGHTENING. I was in so much pain. I am really motivated to take better care of myself and I am really inspired by your story Kelly. Love yah!!Nancyhttps://www.blogger.com/profile/00310820076731888151noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-49654330720187674482011-02-09T11:29:56.668-03:302011-02-09T11:29:56.668-03:30Wow well said! I know before I was saddled up with...Wow well said! I know before I was saddled up with my o2 tank people would just say ohh thats a nasty cold you have. Day in and day out it gets frustrating explaining the reason why you have the cough and how you actually feel. Since being listed I have actually had a few people that were in school with me years ago say "wow I didnt know you had CF" Because just like you said we look normal on the outside.Seansjeephttps://www.blogger.com/profile/00930209740090097430noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-58388870798080684392011-02-02T23:38:22.038-03:302011-02-02T23:38:22.038-03:30As someone who hasn't had a transplant yet, I ...As someone who hasn't had a transplant yet, I am very happy to hear they you get to a point where you can forget. I'm glad you're able to breathe well enough now that you can forget!<br /><br />Stacey @ www.confessionscyster.blogspot.comStaceyhttps://www.blogger.com/profile/08558341367213981372noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-42695365585720643342010-11-23T20:21:49.739-03:302010-11-23T20:21:49.739-03:30This was a great article, Ive read it before! Yes ...This was a great article, Ive read it before! Yes Basically we trade our cf problems for other problems. but at least we can breath after :)Seansjeephttps://www.blogger.com/profile/00930209740090097430noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-87966527623410978802010-11-23T20:13:17.153-03:302010-11-23T20:13:17.153-03:30Awesome tat, I got my first back in July and love ...Awesome tat, I got my first back in July and love it. yes I am addicted now too. Waiting till after TX to get another.Seansjeephttps://www.blogger.com/profile/00930209740090097430noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-60084693572349376552010-09-05T08:51:56.144-02:302010-09-05T08:51:56.144-02:30That's true! Unfortunately, the anti-rejectio...That's true! Unfortunately, the anti-rejection meds are not so accommodating to our bodies. But with all the research and new meds coming, we can pretty much live longer and healthier lives!Kelly's Venturehttps://www.blogger.com/profile/07517329524058561154noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-54392391248583463562010-09-04T18:29:35.288-02:302010-09-04T18:29:35.288-02:30What a great article! Thx! I never had realized, t...What a great article! Thx! I never had realized, that CF won't kill us now that we've had tx.Jesshttps://www.blogger.com/profile/08191778309873176164noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-74006388666019215322010-07-22T00:34:23.304-02:302010-07-22T00:34:23.304-02:30Hello there!!!!
Nice to meet you all!!
Kelly, yo...Hello there!!!!<br /><br />Nice to meet you all!!<br /><br />Kelly, your story is so inspiring!!<br /><br />We look forward to reading more about you and your wonderful family!!<br /><br />Love,<br />Izzy, Josie and Anakin ManThose Elgin Pugshttps://www.blogger.com/profile/02303888585055011616noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-40476956299614616162010-07-15T11:26:16.867-02:302010-07-15T11:26:16.867-02:30kelly you story is one I look to in time of sickne...kelly you story is one I look to in time of sickness . you , I can say are one of the strongest people I know . the strength you have shown dealing with cf has been amazing. you must have one hell of a family structure around you . and as I have said to you before I dont know you husband well but he has shown so much of himself to me as I am sure many other just by the way he has been you soft placed to fall or your wall when you need a helping hand . I just thank god for stories like yours and I pray for more . keep up the good work my friend and like you , lets hope that so many others are granted the gift of life<br />take care <br />mary faganmary faganhttps://www.blogger.com/profile/10365462421777393674noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-88786074582073789452010-07-15T11:21:16.316-02:302010-07-15T11:21:16.316-02:30This comment has been removed by the author.mary faganhttps://www.blogger.com/profile/10365462421777393674noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-86244797755365866132010-07-14T23:37:39.005-02:302010-07-14T23:37:39.005-02:30Yay for Willow! My family has a beagle as well and...Yay for Willow! My family has a beagle as well and we love her!Jesshttps://www.blogger.com/profile/08191778309873176164noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-73267883082630956232010-07-13T23:46:20.824-02:302010-07-13T23:46:20.824-02:30Thanks for visiting our blog! We loves your pugs ...Thanks for visiting our blog! We loves your pugs Beatrice & Molly! Gen ignores non-smush faces, but Foo love all dogs. <br />Come back often and read about out antics.<br />We know CF can be a hard thing to lives with - glad you are thriving!<br /><br />love<br />Gen & Lefty!agent99https://www.blogger.com/profile/12334005818736489335noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-72836421150789614122010-02-14T09:52:10.705-03:302010-02-14T09:52:10.705-03:30Thanks Katey for your comment. It was scary heari...Thanks Katey for your comment. It was scary hearing that coming from the docs ... given that I still feel great. I think it was more of a shock to me that thinking it was "the end". <br /><br />It's nice to know that others post-transplant have had similar situations and have come through them. I have no intensions in letting this stop me ... if it does turn out to be chronic rejection, I'll be fighting!<br /><br />Thanks again for your comment ... it did ease a lot of fears! xoxoKelly's Venturehttps://www.blogger.com/profile/07517329524058561154noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-28415303484565638032010-02-10T03:41:43.716-03:302010-02-10T03:41:43.716-03:30Sorry you didn't exactly have the best appoint...Sorry you didn't exactly have the best appointment. I hate not knowing what's going on or what the cause is of certain things...drives me crazy and gets extremely frustrating. I'm praying things turn around soon for you and those lab values return to normal, as well as your PFT's.<br /><br />I think "chronic rejection" means different things for different people. I was diagnosed with it in August of 2006 (or around that time). I did 2 sessions (15 months per session) of photopheresis, as well as adding a 3rd immunosuppresent and a daily maintenance antibiotic. I have to say that the last 3 years things have been stable and I really can't tell much of a difference being "in chronic rejction." If you don't feel that bad, you will be fine. Sometimes the #'s show more than what you actually feel. And it doesn't have to mean an eventually fatal result....it can turn around with treatment. Each person reacts differently....and each center treats it differently. So I don't want you to worry too much until you know for sure what is going on...and even if it does seem to be chronic rejection... have an open mind...explore treatment options elsewhere if your center doesn't offer them. It WILL BE OK...promise!<br /><br />ok..sorry for the long comment...just felt bad for you and wanted to try and encourage you a little bit.Kateyhttps://www.blogger.com/profile/11628086713110351792noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-16651569450389562502010-01-28T01:30:47.677-03:302010-01-28T01:30:47.677-03:30YEAH for Amy!!! Praying all goes well and for a qu...YEAH for Amy!!! Praying all goes well and for a quick and complete recovery.Kateyhttps://www.blogger.com/profile/11628086713110351792noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-68968582779760848992009-11-29T14:22:30.315-03:302009-11-29T14:22:30.315-03:30I'm glad you found my blog, figured I'd fo...I'm glad you found my blog, figured I'd follow yours as well. Yay for two yrs post-transplant, I hope you get 20 more! I love my CF family!Jesshttps://www.blogger.com/profile/08191778309873176164noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-39430557239838630592009-11-23T20:48:59.619-03:302009-11-23T20:48:59.619-03:30I just want to say thank you for going to my blog ...I just want to say thank you for going to my blog and becoming a follower. It means alot to me that you would take the time and congrats on your second lease on life. My best friend, Jamie Warren is coming up on her two year and I am so happy I still have her in my life. I am rooting for you and I hope that you life is full and joyous. I will definitely keep up with you on your blog. Again, thank you for becoming a follower on my blog. I cannot wait to get to know you better through your posts!<br /><br />DanieDaniehttps://www.blogger.com/profile/00892501696762464477noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-52573432090359510232009-11-22T04:24:19.870-03:302009-11-22T04:24:19.870-03:30Thanks for the update! I follow her blog also, but...Thanks for the update! I follow her blog also, but somehow didn't hear about it! And thanks for stopping by my blog as well. I look forward to keeping in touch!Kateyhttps://www.blogger.com/profile/11628086713110351792noreply@blogger.comtag:blogger.com,1999:blog-4319729538321932951.post-79904762437484159802009-01-03T01:12:00.000-03:302009-01-03T01:12:00.000-03:30happy new year to you!! I am so happy you are doin...happy new year to you!! I am so happy you are doing so well. Thank you for visiting my blog. I hoped it would reach many others like us. I am now 1 year and almost 1 month post transplant! You are obviously an amazing woman! I will keep up with your progress.Jamiehttps://www.blogger.com/profile/16443223033562968398noreply@blogger.com