tag:blogger.com,1999:blog-7924439865196022375.post6980247126516101292..comments2024-03-28T03:16:58.351-04:00Comments on A Matter of Life and Breath: Clinic TransplantPiperhttp://www.blogger.com/profile/01992462169607238118noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-7924439865196022375.post-7024968580228748882010-04-10T14:33:17.959-04:002010-04-10T14:33:17.959-04:00With April being National Organ Donation Awareness...With April being National Organ Donation Awareness Month I posted on my FB profile:<br /><br />April is Organ Donor Awareness Month! Hit the "Like" button if you are an organ donor! :)<br /><br />This should help people realize the importance and remind them when they update their drivers license that the can change their option and become a donor (if they want to).Denise Fahrhttps://www.blogger.com/profile/14628704302255060878noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-77878814106352377012010-04-10T12:22:46.498-04:002010-04-10T12:22:46.498-04:00Piper, you are amazing. I love reading your blog....Piper, you are amazing. I love reading your blog. You have touched so many lives and add a light to so many people with CF or not. I know you will find the right pair of lungs and I know your team of awesome doctors will do an incredible job. You are such an inspiration to so many people. I wouldnt be surprised if we saw you on a NY News channel one day talking about your experience...or maybe even a book authored by you about your experience. You are amazing! Thank you for sharing your life with us. :)Ileanehttps://www.blogger.com/profile/05034871215217470633noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-13891694845903483692010-04-10T04:21:21.743-04:002010-04-10T04:21:21.743-04:00Ps: I started the transplant proces early too (wel...Ps: I started the transplant proces early too (well first talked about starting it May 09) and now I am heading to an "eval" in May 2010 though we dont think I am "sick" enough yet like you might know if you read any of my responses on CL and/or cf.com.<br /><br />Actually the check up before I was told 10 years till tx b/c I was doing really well... then I got b. cep and the next clinic tx was brought up (by a new tx doc but still) <br /><br />Sorry to overtake the comments section for a minute ;)Tabithahttps://www.blogger.com/profile/13442703808384735458noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-75771882875379606792010-04-10T04:18:37.072-04:002010-04-10T04:18:37.072-04:00Wow. I love coming to your blog b/c I swear you wr...Wow. I love coming to your blog b/c I swear you write exactly what I am thinking but cant get out so nicely on paper. Literally though, see I live 4 hours away from my CF team, currently I see a local pulmonologist for 1-2 month updates and other things like certain tests, vitamins levels blah blah etc etc... he doesnt have hospital privledges though. It is really really expensive to go down to S.F. whenever I need to be hospitalized and so it would be easier if for some of the tune ups we could stay in my town for obvious reasons. Well through the grapevine (we've known this was coming for maybe a year or year and a half) they are trying to establish a CF center, the peds is well on its way but the adults is just starting... (I kinda wrote about this on CF.com) I have a doctor and a "new" team... <br /><br />I am trying to keep an open mind but I LOVE my CA doctors. I go to a smaller (probably even not as good) hospital in S.F. (meaning I dont go to Stanford, the top of the line for bay area and then there is UCSF too) but I can not switch to Stanford, I love the campus, I love (and hate) they see a lot of CF'ers (worry about cross contamination more so FROM me rather than TO me)... jeez... anyways. I love my doctors too and like you said, I think I have a great team, for me personally. <br /><br />In fact after talking to my nurse coordinator (while almost crying on the phone) about how my first appointment went with thie "trial" adult cf thing I started crying to my mom haha. Technically I am not supposed to be leaving them, and the hometown team is supposed to be coordinating (asking and double checking w/ CA) but he/ that team didnt sound like they really had any plans of coordinating... I cant help but get nervous.<br /><br />Sorry so long, but this was perfect timing for this post girl!Tabithahttps://www.blogger.com/profile/13442703808384735458noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-56408918809325185192010-04-09T20:08:01.800-04:002010-04-09T20:08:01.800-04:00You are so right Piper about the relationship betw...You are so right Piper about the relationship between you and the docotrs and transplant team. I have moved docotrs as l wasn't happy and now have a fantastic doctor and transplant team and after all together as a whole team include me we are all in control of my/your life.Weybshttps://www.blogger.com/profile/02326981096372507298noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-674935631904403862010-04-08T23:58:58.089-04:002010-04-08T23:58:58.089-04:00Piper, It's so important to like (love?) and t...Piper, It's so important to like (love?) and trust your doctors... and lets hope it doesn't take a million dry (or damp) runs to find the *perfect* set of lungs! :) ~JulietJuliet Pagenoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-73819524875100027432010-04-08T23:08:47.589-04:002010-04-08T23:08:47.589-04:00You are so right about needing the right connectio...You are so right about needing the right connection with your CF and transplant teams. I feel I am also blessed that I am at the right Doctor's for me. I really think that being 100% with your doctors makes this all a little bit easier. Still praying that you get your miricle soon.CFstephhttps://www.blogger.com/profile/12808675789017622773noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-63065273613163724872010-04-08T22:18:42.104-04:002010-04-08T22:18:42.104-04:00You are one awesome lady. You have such talent in ...You are one awesome lady. You have such talent in your writings and get your thoughts across eloquently (i used a big word LOL). Its so great you have such a great cf team and transplant team. You will do great when that time comes and they will make sure of it.Amandahttps://www.blogger.com/profile/10824923909971292134noreply@blogger.com