Comments on: GREAT News!!! http://saltyandsweet.org/2010/02/23/great-news/ Daily life fighting Cystic Fibrosis and Cystic Fibrosis Related Diabetes. Thu, 08 Sep 2011 19:43:29 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Malachy Harvey http://saltyandsweet.org/2010/02/23/great-news/comment-page-1/#comment-775 Malachy Harvey Sat, 05 Jun 2010 21:05:51 +0000 http://saltyandsweet.org/?p=506#comment-775 Hi I'm Malachy-age 14-and I ,like you, have CF and CFRD! Huh, maybe I shouldn't have an exclamation mark there cause that is not something to be excited about...anyways my lung function is at 60% so I was not able to join the CF aztreonam trial like you were. I did however get it immediately after it came out and WOW it really did save years of my life. I used to get admitted every month or two to the hospital for two weeks because of my CF. I am going through my second portacath right now but because of the inhaled aztreonam (oh I also live with my mother now and before when I lived with my father I was depressed so my unhappy mind made me have a sicker body...anyways) I have stayed out of the hospital this entire year! I am resistant to all oral antibiotics except Colistin-and now aztreonam-so when I get sick I usually have to go in. Now I am healthy because of this new antibiotic. Oh and I help with the CFF to raise money for CF and I also work on the comittee. I heard about a new drug called Vertex- uh oh wait I forgot the number its like Vertex-178 or something like that, anyways the drug is supposed to correct the mutation in CF and is in phase II clinical trials and is showing promising results; I am told it will be out in 2013. I also read about the migulastat, however, and now I wonder if there is already a cure but in the hands of Europe, why would the FDA not allow it over here? Hopefully either drug will cure CF and will come out soon! Oh I also read that you were have some problems with CFRD. I used to get high sugars in the 300's and 500's when I was on prednisone but now at most I get to the 200's now. I got better with CFRD when I received an insulin pump. I have a minimed medtronic insulin pump and it is amazing because of how well I am able to control my diabetes, oh and there are also a lot of cool features (there is also a sensor to track your sugars 24/7 but I would wait for them to perfect it first and it cost $350 a month!). Here's the link if you're interested: http://www.minimed.com/pumptherapy/index.html . I highly recommend it if you do not already have one. I was not able to read all of your posts, so maybe you do already have one. I am glad there are other people out there who are not afraid to talk about my CF, I have 4 siblings with CF and it seems like everyone but me is in denial of it. Sorry about the long post, I was going to email you but when I clicked the email link it went to microsoft outlook and I couldn't figure out how to use it. I do have to say, too, how amazing and organized your website is! I never thought about a CF blog website, and the title is great too! I figured out what the salty part was about but not the sweet part until I read you "about me" page. Well email me back please, it would be nice to talk to someone else about this stuff. Hi I’m Malachy-age 14-and I ,like you, have CF and CFRD! Huh, maybe I shouldn’t have an exclamation mark there cause that is not something to be excited about…anyways my lung function is at 60% so I was not able to join the CF aztreonam trial like you were. I did however get it immediately after it came out and WOW it really did save years of my life. I used to get admitted every month or two to the hospital for two weeks because of my CF. I am going through my second portacath right now but because of the inhaled aztreonam (oh I also live with my mother now and before when I lived with my father I was depressed so my unhappy mind made me have a sicker body…anyways) I have stayed out of the hospital this entire year! I am resistant to all oral antibiotics except Colistin-and now aztreonam-so when I get sick I usually have to go in. Now I am healthy because of this new antibiotic. Oh and I help with the CFF to raise money for CF and I also work on the comittee. I heard about a new drug called Vertex- uh oh wait I forgot the number its like Vertex-178 or something like that, anyways the drug is supposed to correct the mutation in CF and is in phase II clinical trials and is showing promising results; I am told it will be out in 2013. I also read about the migulastat, however, and now I wonder if there is already a cure but in the hands of Europe, why would the FDA not allow it over here? Hopefully either drug will cure CF and will come out soon! Oh I also read that you were have some problems with CFRD. I used to get high sugars in the 300′s and 500′s when I was on prednisone but now at most I get to the 200′s now. I got better with CFRD when I received an insulin pump. I have a minimed medtronic insulin pump and it is amazing because of how well I am able to control my diabetes, oh and there are also a lot of cool features (there is also a sensor to track your sugars 24/7 but I would wait for them to perfect it first and it cost $350 a month!). Here’s the link if you’re interested: http://www.minimed.com/pumptherapy/index.html . I highly recommend it if you do not already have one. I was not able to read all of your posts, so maybe you do already have one. I am glad there are other people out there who are not afraid to talk about my CF, I have 4 siblings with CF and it seems like everyone but me is in denial of it. Sorry about the long post, I was going to email you but when I clicked the email link it went to microsoft outlook and I couldn’t figure out how to use it. I do have to say, too, how amazing and organized your website is! I never thought about a CF blog website, and the title is great too! I figured out what the salty part was about but not the sweet part until I read you “about me” page. Well email me back please, it would be nice to talk to someone else about this stuff.

]]> By: Chris Allen http://saltyandsweet.org/2010/02/23/great-news/comment-page-1/#comment-670 Chris Allen Wed, 10 Mar 2010 19:21:14 +0000 http://saltyandsweet.org/?p=506#comment-670 Thank you for this information. I hope it helps more than just me. Have a great day!!! Chris Kitchen Scales Thank you for this information. I hope it helps more than just me. Have a great day!!!

Chris
Kitchen Scales

]]> By: Stephanie Jewett, RN http://saltyandsweet.org/2010/02/23/great-news/comment-page-1/#comment-657 Stephanie Jewett, RN Mon, 01 Mar 2010 16:42:49 +0000 http://saltyandsweet.org/?p=506#comment-657 Great news and interesting blog! Stephanie Great news and interesting blog! Stephanie

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