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magicbluepillA blog about Cystic Fibrosis and Kalydeco
http://magicbluepill.wordpress.com/
A blog about Cystic Fibrosis and Kalydeco
http://magicbluepill.wordpress.com/
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https://magicbluepill.wordpress.com
A blog about Cystic Fibrosis and Kalydeco
magicbluepill.wordpress.com
16 December Update « magicbluepill
https://magicbluepill.wordpress.com/2014/12/16/16-december-update
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. December 16, 2014. May 6, 2015. I meant to update much sooner but the headaches made this difficult. Thanks to everyone who has sent me messages over the last month or so, sorry if I have not replied, I do appreciate all the supportive comments🙂. I have added some photos below showing my puffy face since April:. This is what I normally look like, taken January this year. Leave a Reply Cancel reply. Almost ...
Sweat Test: From 102 to 40! « magicbluepill
https://magicbluepill.wordpress.com/2013/04/19/sweat-test-from-102-to-40
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. Sweat Test: From 102 to 40! April 19, 2013. May 3, 2013. Two posts in one day! I couldn’t contain my excitement about my sweat test result so here it is:. Na 110, Cl 102). Na 60, Cl 54). Na 49, Cl 40). This means I am. Below the ‘grey area’ of 40-59! I am still hesitant to call this normal but it pretty much is! Some information about sweat tests. For people older than 6 months of age, a chloride level of:.
229 days of Kalydeco « magicbluepill
https://magicbluepill.wordpress.com/2013/05/08/229-days-of-kalydeco
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. 229 days of Kalydeco. May 8, 2013. May 30, 2013. Felt like being creative with the title so went with 229 days rather than almost 8 months. This is 458 magicbluepills. Pretty amazing what many small pills in a row can do. I had clinic yesterday and my FEV1 was 69%. Whilst not in the special 70s, it was 2.36L last time and 2.35L this time, so it really is an insignificant difference! It has been 6 months wit...
1000 magic blue pills « magicbluepill
https://magicbluepill.wordpress.com/2014/02/21/1000-magic-blue-pills
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. 1000 magic blue pills. February 21, 2014. February 22, 2014. Decided to update my blog after 6 months of neglect! Last September I also had my first IVs on Kalydeco. We decided that after 1 year of Kalydeco, given that I used to have IVs every 3-4 months, that it made sense to use IVs to get my lungs in the best shape possible. I had also dropped very slightly to 66% after visiting South America. You are co...
CFSA Ball Speech « magicbluepill
https://magicbluepill.wordpress.com/2014/10/22/cfsa-ball-speech
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. October 22, 2014. October 23, 2014. Just a quick update to say my lungs are going well but I have had some other health issues, will write more in another blog post. Hopefully soon🙂. In the meantime I thought I would add my speech from the recent CFSA ball:. Hi everyone, my name is Gen, and I’d like to share my story about living with Cystic Fibrosis. I knew that a transplant may not be far away, so I alwa...
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Songs From The Id: 6 months on...sponsored by Kalydeco ;)
http://songsfromtheid.blogspot.com/2013/07/6-months-onsponsored-by-kalydeco.html
Sunday, July 14, 2013. 6 months on.sponsored by Kalydeco ;). The nurses also mentioned the phase 3 trials for the combined vertex drugs for DF508 were starting soon so fingers crossed that provides a breakthrough for the majority of PWCF. Stop the press.sweat chloride test came back as 37, anything below 50 is classed as normal. My original (pre Kalydeco) score was 120! July 17, 2013 at 8:29 AM. Subscribe to: Post Comments (Atom). Songs From The Id. Embedded from 24Slides Blog. The genetics of CF. Camero...
Songs From The Id: March 2013
http://songsfromtheid.blogspot.com/2013_03_01_archive.html
Sunday, March 17, 2013. 1 and a half months post K. Quick update; just heard back from the doctor at hotel de la Wythenshawe and my sweat chloride has gone from 120 to 62! Lf is up by 15% as well. More importantly; I feel loads better! I'm running out of superlatives really, my lungs just feel so much better than they ever have, or at least were when I was much younger ;-). That would never have happened before K, except maybe back when I was 15. Subscribe to: Posts (Atom). Songs From The Id. Global: Cha...
Songs From The Id: May 2012
http://songsfromtheid.blogspot.com/2012_05_01_archive.html
Friday, May 25, 2012. Roger Red Hat: Funny Bugger. Http:/ la-boca-de-la-cueva.blogspot.co.uk/. RIP mate and thanks for the nice post about City. Wednesday, May 23, 2012. Run de la Mancunian. Not my best ever run. It should have been good; a month ago my training was going well and I was all ready and meaning to step it up to that hard-to-reach. 1 Hour 10, loser ;-). 59 minutes, totes jealous ;-). Subscribe to: Posts (Atom). Songs From The Id. Embedded from 24Slides Blog. The genetics of CF. And so must I.
Songs From The Id: Victory for Kalydeco!
http://songsfromtheid.blogspot.com/2013/01/victory-for-kalydeco.html
Wednesday, January 23, 2013. I've been following this drug since 2009 when I first tried to get on the trial; and although it was all very promising (I tried to enrol in the trail but was a few weeks too late due to my genes being lost in my notes, grrr) I think the penny finally dropped when I read this article:. Http:/ commonhealth.wbur.org/2011/05/cystic-fibrosis. It was this bit which amazed me, the first Eureka moment for CF R&D? Subscribe to: Post Comments (Atom). Songs From The Id. My Life With CF.
Songs From The Id: July 2012
http://songsfromtheid.blogspot.com/2012_07_01_archive.html
Wednesday, July 25, 2012. Should I stay or should I go? Seriously thinking of quitting my job and having a month off before looking for something new. The new line manager has just sent me an Email saying:. I am very keen for you on a monthly basis to spend time on-site here at Norwich. What I am suggesting that you spend a week a month on-site, does this work for you? I was thinking of replying along the lines of. Need to decide by Friday though. Tuesday, July 17, 2012. Sods Law and the Roses. Cystic Fi...
Songs From The Id: October 2012
http://songsfromtheid.blogspot.com/2012_10_01_archive.html
Wednesday, October 17, 2012. Confidence is a preference. Confidence. It's a funny thing isn't it? I now have 2 days free and I thought this would be more fun, but it's not as much fun as I thought it would be! After dropping the kids off at school and sorting out the washing and ironing, looking for jobs, revising for jobs, and doing some shopping, there's not a lot of time left before it's time to pick up the kids again.gahhh! Stay at home mums/dads of the world, I salute you! Urgh, I can't believe I ma...
July | 2014 | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/07
Our ΔF508 Life. Our family, living with CF. Monthly Archives: July 2014. July 14, 2014. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. Or that you and your partner both carry the cystic fibrosis gene (or I should say one of the many genes that can cause CF). I’ve thought a lot about this problem since Alma was born. What does it mean to know that your child will, or that your child might, have cystic fibrosis? It’s something that sometimes gets framed as an “ impossible choice. Ok What I can s...
So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/07/14/so-youve-found-out-your-unborn-baby-has-cystic-fibrosis
Our ΔF508 Life. Our family, living with CF. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. July 14, 2014. Or that you and your partner both carry the cystic fibrosis gene (or I should say one of the many genes that can cause CF). I’ve thought a lot about this problem since Alma was born. What does it mean to know that your child will, or that your child might, have cystic fibrosis? It’s something that sometimes gets framed as an “ impossible choice. So What can I contribute instead. Ok What I ...
Our ΔF508 Life | Our family, living with CF | Page 2
https://ourf508life.wordpress.com/page/2
Our ΔF508 Life. Our family, living with CF. September 10, 2013. Today has been a hard day. Today I found out that a woman with CF who I know died. I didn’t know her well at all, and only knew her because she contacted a friend of mine when Alma was diagnosed. She was very kind and told me in that first awful week that there was a lot of hope for Alma. I didn’t hear much from her after that, though I saw her occasional posts on Facebook. And now she’s gone. What is the next exciting installment? When I se...
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What do I see? | A blog about yoga, mental health, love, compassion, beautiful things and the human experience! It is a blog about many things, but mostly about how my eyes and heart see the world.
What do I see? A blog about yoga, mental health, love, compassion, beautiful things and the human experience! It is a blog about many things, but mostly about how my eyes and heart see the world. What do I stand for? 8230;this is what I want you to know. April 10, 2015. Instead, you got angry. I believe that you were influenced by those closest to you, and I understand that, but you were not always listening to yourself. Meanwhile, I just kept swirling around in a haze and all I could do was cry. I can p...
Jenny's New Blogita ^^
Monday, May 6, 2019. Friday, December 20, 2013. Tuesday, May 21, 2013. Ich studiere Deutsch :D. Und ich werde hier auf Deutsch schreiben :3. Ich habe Video ueber es :E. Heute habe ich Konjunktiv abgeschlossen. Ich lerne die Grammatik hier:. Http:/ german-grammar.de/grammar/content/grammar 16 20.htm#chapter19. Also Planne fuer morgen sind:. Chapter 20: More Prepositions. Also ich werde 50 neue Prepositions lernen WooHOoo :E. Friday, May 10, 2013. Recipe: Molten Chocolate Cakes. Tuesday, May 7, 2013.
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magicbluepill
A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. Amazingly stable after 2.5 years of Kalydeco! February 17, 2015. February 18, 2015. I am having another procedure for my obstructed blood vessel tomorrow, but thought I would write about how everything is going with kalydeco in the meantime. In december kalydeco was finally listed on the PBS in Australia! This means I suddenly had much more free time, I didn’t know what to do with myself! December 16, 2014.
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