tag:blogger.com,1999:blog-5054655337883254442.post6796962344766653343..comments2024-02-01T03:55:09.220-08:00Comments on Inhaling Hope: Four Months Of OrkambiInhaling Hopehttp://www.blogger.com/profile/10487999036810367535noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-5054655337883254442.post-87222295376251034422017-07-17T13:31:31.207-07:002017-07-17T13:31:31.207-07:00Hi Gabrielle,
I am sorry your daughter is having a...Hi Gabrielle,<br />I am sorry your daughter is having a tough time at the moment. Orkambi is such a tricky medication because everyone reacts so very differently to it. I am sorry her lung function is currently lower than it was in January. Orkambi gave me extreme shortness of breath that took several months to resolve. I did try antibiotics towards the beginning of Orkambi, but for me it did not improve my symptoms because I think a large part of my problem was inflammation and side effects. However, CF infections are so serious that I wanted to be 100% sure my shortness of breath and extreme coughing wasn't due to infection. Of course, we are all different and I know many CFers that required antibiotics after starting Orkambi. I have been on several courses of antibiotics and IVs since starting Orkambi almost 2 years ago. Is her doctor supporting her decision to try IVs? <br /><br />I hope your daughter finds relief from her symptoms soon! Please keep me updated on how she does with Orkambi and I hope it ends up being beneficial for her!Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-89852846443695381132017-07-15T10:28:47.564-07:002017-07-15T10:28:47.564-07:00It was interesting reading your story. My daughte...It was interesting reading your story. My daughter is 26 with CF, she started the Orkambi trial in January 2017 with an FEV1 of 53-55% and fairly stable at that for a couple of years, then she dropped to 43% in the April. She felt that she was on the Orkambi and experienced the tightness of chest when she first started, but we don't know for sure that she was on it. A week ago, the trial was at the end and she was definitely put on Orkambi. She hasn't noticed any change but has been fighting an infection for a few months and is thinking of going onto IV's. I was wondering, when you were feeling bad when you first started on Orkambi, did you have any IV's to make sure that you didn't get sick?<br /><br />Thanks for anything you can share.<br /><br />kind regards,<br />GabrielleGabriellehttps://www.blogger.com/profile/16023355949869391895noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-46619212551808555852016-03-14T13:22:25.611-07:002016-03-14T13:22:25.611-07:00Absolutely! Thank you for asking!Absolutely! Thank you for asking!Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-89026317984595988882016-03-11T09:28:44.174-08:002016-03-11T09:28:44.174-08:00Hi there,
lovely to read your story. Very encourag...Hi there,<br />lovely to read your story. Very encouraging indeed. Well done for sticking with the Orkambi long enough!<br />Would it be ok if I translated your story into German for a German Orkambi group, as the drug has only been here for two months now and stories like yours are rare for us. People would love to hear your story .... and I could link your blog to be completely transparentAnonymoushttps://www.blogger.com/profile/00729034202784660193noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-69763080540544391722016-02-26T14:19:46.676-08:002016-02-26T14:19:46.676-08:00Thank you. I will keep updating if I notice any ot...Thank you. I will keep updating if I notice any other changes. :)Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-34136174825668340972016-02-25T12:36:01.087-08:002016-02-25T12:36:01.087-08:00This is such wonderful news!! I hope you'll p...This is such wonderful news!! I hope you'll provide an update as you keep taking Orkambi. I hope you continue to feel well!! :)Chttps://www.blogger.com/profile/04877399848566077924noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-64371713527415885732016-02-15T12:14:13.091-08:002016-02-15T12:14:13.091-08:00Thank you! I do agree that FEV1 is only part of th...Thank you! I do agree that FEV1 is only part of the equation, although I would not mind if mine was a little higher ;)Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-75890473153752291342016-01-16T11:17:57.123-08:002016-01-16T11:17:57.123-08:00I'm so impressed that you stuck it out so long...I'm so impressed that you stuck it out so long, great job! I'm thrilled that you're seeing benefit. It would be great to see an exciting FEV1 number, but I've always felt that quality of life, energy, and a general healthy feeling was way more important than a number on a page. I'm so happy for you! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-47053542273757850242016-01-14T14:30:17.485-08:002016-01-14T14:30:17.485-08:00The only reason I stuck with it was my doctor ran ...The only reason I stuck with it was my doctor ran a study for Orkambi and was confident that it would eventually benefit me if I gave it enough time. I am very grateful for him because if he had shown any hesitation at all I would have absolutely quit. I am just glad he was right.Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-85687328527908447592016-01-14T14:27:53.015-08:002016-01-14T14:27:53.015-08:00Thank you!<3 Yes, science is amazing!Thank you!<3 Yes, science is amazing!<br />Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-34001885338404622302016-01-06T18:28:00.039-08:002016-01-06T18:28:00.039-08:00So glad you are finally seeing some positive resul...So glad you are finally seeing some positive results!! Definitely scary to think of how downhill things can go at first. I don't know if I would have had the guts to give it that long to kick in. Hope you keep seeing benefits!Danahttps://www.blogger.com/profile/12652081200608064016noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-60784738477708172082016-01-06T13:23:49.219-08:002016-01-06T13:23:49.219-08:00Wonderful news!
So happy for you, your husband ,...Wonderful news! <br /><br />So happy for you, your husband , your daughter.<br /><br />So, so happy for you.<br /><br />What a twisted nightmare of having to feel sick for so long in order to feel better. I can't imagine what it was like trying to keep faith in the treatment when you felt so bad. Thank goodness you knew about this counter-intuitive route to increased healthiness from reading the reports of other Orkambi users.<br /><br />Science is amazing.<br /><br />You are amazing.<br /><br />Happy start to 2016!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-63469010627573831522016-01-05T22:42:19.204-08:002016-01-05T22:42:19.204-08:00Also, thank you for following my blog ❤Also, thank you for following my blog ❤Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-3642917767744081832016-01-05T22:41:16.352-08:002016-01-05T22:41:16.352-08:00Yes, I would love for you to share! Thank you for ...Yes, I would love for you to share! Thank you for asking :) It is so scary to trust that a medicine will help when initially it makes you feel so sick. I questioned my choice to stay on the medicine constantly. Sometimes knowing what the right decision is can be so hard. <br /><br />I am so happy you are able to get Kalydeco off label and that it has changed your life. There is so much real hope in the future of medicine for Cystic Fibrosis. Inhaling Hopehttps://www.blogger.com/profile/10487999036810367535noreply@blogger.comtag:blogger.com,1999:blog-5054655337883254442.post-17961742156988012392016-01-05T21:03:37.350-08:002016-01-05T21:03:37.350-08:00This post brought tears to my eyes. Although you ...This post brought tears to my eyes. Although you don't know me, I have been following your blog for years. I'm a mom with CF. I have similar lung functions as you and started off-label Kalydeco last November. It has been life changing for me as well. Would it be ok with you if I shared the link to your blog on a forum that I'm on? I really think it would help many people who have started Orkambi and can't see a light at the end of the tunnel. Or if you'd rather, I could copy and paste your post instead of share your link.<br />I am so very happy for you. These drugs are changing the face of this disease. I feel like I'm living a dream at times. Although I tried my best to stay optimistic, I never truly believed that I would benefit from such a miraculous discovery. It is my hope and prayer that every last person with CF will soon find relief from this awful disease. Anonymousnoreply@blogger.com