Almost one year of Kalydeco

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Decided it was time for a summary post about my new health on Kalydeco.

I have been on Kalydeco for 11 months through the Named Patient Program, a program where Vertex supply Kalydeco to those who are very unwell. Kalydeco is the first medication that treats the underlying cause of Cystic Fibrosis in patients with the G551D mutation.

Before Kalydeco my lung function was 41% and very unstable. I was in hospital every 3-4 months. I was on medications that treated the CF symptoms; these were becoming less effective as I grew older.

For the last 11 months my FEV1 has been stable at approx 70%. This is amazingly stable compared to before; for 20 years my lung function has varied up to 20% from month to
month, now I am stable for the first time in my life. This is my highest in 3 years.

I have stayed out of hospital for 11 months, which is a 20 year record (I am currently on IVs for mostly prophylactic reasons, I will post about this soon). Before Kalydeco I had over 60 hospital admissions, equalling 3 years of my life.

Every aspect of my health has improved with Kalydeco, I have gained 6kg, I can run up stairs, I can sleep without coughing and I’m attending uni more often. My sweat test results have improved from 102 to 40. This is much lower than the point (60) associated with the CF diagnosis.

Previously I did not plan further ahead than 5 years. At the age of 28, with a life expectancy of 37, I knew transplant was edging closer. Thanks to Kalydeco I now don’t have to plan around hospital and CF, instead I can plan to have a family, a career and to grow old with my lungs.

I hope that Kalydeco can become available to everyone around the world who may benefit as soon as possible. Kalydeco is not approved in Australia yet; we are trying to speed up the reimbursement process and would appreciate your support on facebook and twitter.

Pre Post Kalydeco

Images from Dec 2011 and May 2013. Inflammation and scarring appear white, this has improved significantly on my second xray.

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2 thoughts on “Almost one year of Kalydeco

    John Last Senior said:
    August 24, 2013 at 8:33 am

    Genevieve, this news is excellent! I’ve been following your blog only recently and I have finally, at almost 87 years of age, withdrawn completely from my lifelong engagement with epidemiology and clinical medicine. Unlike my brother Peter, I don’t think I carry the CF gene, because I don’t have the characteristic immunity to the common cold; I will be seeing the hotshot geneticists in our medical school soon and having the relevant genetic tests, because two of my grandsons have steady long-term partners and one of these is keen to start a family. I’ll let you know the results in due course. Love and best wishes, John Last

    John M Last, OC, MD
    Emeritus professor of epidemiology
    University of Ottawa
    Residence: 11A/300 Queen Elizabeth Dr
    Ottawa, ON K1S 3M6 CANADA
    Tel: 613-233-4859
    oldwhitebeard@gmail.com (personal)
    jmlast@uottawa.ca (work)
    http://www.medicine.uottawa.ca/epid/eng/lastbio.html
    Blog: lastswords.blogspot.com

    Kevin F said:
    June 20, 2014 at 9:44 am

    Genevieve,

    I came across your blog while in the midst of my non-stop frantic research that I’ve been doing what seems to be every waking minute I have lately. My 6 week old son was diagnosed with CF when he was 10 days old. If you can use the word “fortunately”, he inherited a G551 gene from me that I was unknowingly carrying. He also received a D508 from his mother. From the day he was diagnosed, all the doctors have been telling us how lucky we are for him to have the G551 because of Kalydeco and how this will give him some semblance of normalcy in his life as he grows up. Reading your posts about your health before and after Kalydeco has given me some hope. I have a good friend who lost one brother at 17 and another at 30 to CF, and that was all I really knew of the condition prior to any of this. I just wanted to thank you for your blog, for being an inspiration, and want to wish you continued good health and success with your treatments. Thank you again.

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