As 2013 comes to a close I am in a reflective and joyous mood. This year has been very good to my little family. We have had much to enjoy and be thankful for in all facets of our lives.
From a health perspective Dave and I have ended this year triumphantly. Since Dave’s three week hospital admission he has been firing on all cylinders. He’s put on a bit of weight, is getting stronger and fitter and his lung function is stable at a very pleasing PB after years of dwindling performances.
As for me, I haven’t had intravenous antibiotics for nineteen months! I haven’t been able to avoid a holiday at the Hilton for this long in quite a few years. My lung function was at my peak for a third clinic visit in a row and I officially fall into the “well and stable” category according to my consultant.
2014 hails the beginning of two years of the open label trial for Kalydeco Plus. That is, we will both be taking the certified “real deal”. If we are already taking Kalydeco Plus then this would explain our fantastic health and we would expect it to continue. If we aren’t… imagine how well we’ll feel then! Oh, the possibilities.
Throughout the year I have been constantly amazed by the interest, care, support and love that I have received from people in my life and those who respond to my blog and Facebook posts. I am touched when people take the time to engage with CF and to discover more about what it’s like to live with this condition. Thank you.
I hope that 2013 has ended well for all of you and that 2014 promises fantastic experiences. Happy Christmas and New Year to all, and to all a good night!
capturing cf 
Warms my cockles to see such a lovely and deserving couple win at life – bring on 2014 🙂 Looking forward to next catch up, it’s been too long xxoo
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Hi Janette, I am the father of a 4 yr old with CF (DD508) in melbourne.
Sounds like you are doing well with the new drugs.
Are you taking 809 or 661 with Kalydeco ? Twice daily ?
Hope the improvement continues.
VJ
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Hi VJ. Thanks for your interest. We are taking 809 (lumacaftor) with Kalydeco. We have trial medication twice a day but as it is a blinded trial with different dosing combinations I’m not sure what’s in each dose -ie: whether we have both drugs twice a day or one in the morning and the other at night. At the completion of the trial I’ll be able to find out. We are both still doing well. How is your child doing?
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Thanks for the speedy reply Janette ! My daughter Meesha is doing OK – It was intertesting reading your blog about attending the CF conference and parents pre-occupation with keeping their kids “bug free” – It certainly does stress us out abit (perhaps more than a bit 🙂 but I guess part of it is not having contact with Adult CF’ers who are managing OK despite as you say “being colonised for decades”.
I would be interested in hearing from you on what you have done which you feel has helped mange CF over the years, the things which haven’t helped , and any advice you would give us caregivers to little CF’ers
Thanks again
VJ
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Hi VJ. Happy to. Perhaps it would be best to email or chat in person. If you email capturingcf@gmail.com we can interact that way or exchange phone numbers. Looking forward to hearing from you!
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Hi janette, thanks again for the reply on your Blog
I sent an email through with my details – let me know if it didn’t come through.
Thanks again, look forward to speaking with you.
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