tag:blogger.com,1999:blog-7924439865196022375.post7916792734414282467..comments2024-03-28T03:16:58.351-04:00Comments on A Matter of Life and Breath: I Would Sing You a Song of DevotionPiperhttp://www.blogger.com/profile/01992462169607238118noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7924439865196022375.post-44468791563995687562009-02-01T11:38:00.000-05:002009-02-01T11:38:00.000-05:00Piper,I hope that you have to face the listing que...Piper,<BR/><BR/>I hope that you have to face the listing question later rather than sooner. You have had a rotten year but your quality of life still seems great. I know you will know what to do when the time comes.<BR/><BR/>I know what you mean about having an understanding job and great friends and family around. I feel like one of the luckiest people I know - even with this disease.<BR/><BR/>Take care!<BR/><BR/>lauraenvironmental fiendhttps://www.blogger.com/profile/02466086553519433467noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-60902723523190543202009-01-28T01:40:00.000-05:002009-01-28T01:40:00.000-05:00Wow, so powerful. Thank you for sharing that batt...Wow, so powerful. Thank you for sharing that battle-I know transplant can not be an easy decision.Aliciahttps://www.blogger.com/profile/14286911362296016524noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-48918141573067864592009-01-27T21:05:00.000-05:002009-01-27T21:05:00.000-05:00Yes that would be a sign of affection to have your...Yes that would be a sign of affection to have your pup laying on your clothes. They smell like you and he wants to be near you when you are not there :) Dogs are so stinking cute!!!!!!<BR/><BR/>I wish ya luck on the 6th and hope you can find some time to do some thinking by then. If not don't stress. You still have some kick in ya and CF won't stand a chance against your attitude :)<BR/><BR/><3Amyhttps://www.blogger.com/profile/12354849302798817593noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-60254771100562653092009-01-27T11:49:00.000-05:002009-01-27T11:49:00.000-05:00Hey Piper,I'm sorry that you aren't able to kick t...Hey Piper,<BR/>I'm sorry that you aren't able to kick this. I was on IV's for nearly a year straight once, it sucked. I was listed at 41% FEV1. I know that you know most the in's and out's of transplant. I was in pretty bad shape through the winter, and by march of my transplant I was doing pretty well, hence the success after transplant. The docs always said to me "the healthier you are going in, the healthier you'll be coming out"...<BR/>Hang in there!!! <BR/>ps. speaking of dogs and cashmere...my dog snuck onto one that ended up on a pile on the floor of things to fold. Stinker.Heidihttps://www.blogger.com/profile/07791278701579085418noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-66835160910335512482009-01-27T08:06:00.000-05:002009-01-27T08:06:00.000-05:00thanks for the advice. i'm actually already on the...thanks for the advice. i'm actually already on the EAP for AzLi. this just happens to be my "off" month. i am counting the ays until i can go back on it (and off the yucky TOBI) b/ i love how well that drug works! good for you staying out of the slammer for so long!Piperhttps://www.blogger.com/profile/01992462169607238118noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-17237024483661262742009-01-27T01:37:00.000-05:002009-01-27T01:37:00.000-05:00I am not sure if I told you but you should talk to...I am not sure if I told you but you should talk to your docs and see if you can get on the early access study for aztreonam. we have the same lung function and I was going in the joint every 2 to 3 months the last time I was in was March. In april I started taking USANA which is a brand of vitamin supplements and I take a bunch also I started inhaled aztreonam. Its with the e flow takes 3 min 3 times a day its 28 on 28 off just like TOBI and on my off month from Aztreonam I take TOBI but I only do it for 2 weeks at a time cause it makes me bronchospasm. Let me know if you want more info or talk to your docs to see if you can get on it, and disregard if I already told you. Ill blame it on almost being 30 ;) Hope the coughing gets better.Somer Lovehttps://www.blogger.com/profile/05210381968499748449noreply@blogger.com