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!! I’m joking, but it is nice to have the 10-15 hours per week back, and with the way my health has been it would have been hard to do much anyway.
As a result of the PBS listing I had another sweat test, which was 44 🙂
Before kalydeco it was 102, at 1 month it was 54 and at 7 months it was 40.
Despite my other recent health issues my lungs have been amazingly stable, with an FEV1 of 68% at my last appointment. It really is my magic blue pill!!
My bone density is normal and has actually increased slightly over the last few years, my liver and kidneys are normal and my diabetes is diet controlled as my sugar levels have improved over the last year (healthier carbs, smaller meals, alpha lipoic acid with large meals). One of my vitamin levels is high (vit E – 49 umol/L) and the other two vitamin levels are normal (vit D – 90nmol/L, vit A – 2.1 umol/L). My doctor decided to halve my vitabdeck dose and it is possible that my levels may be ok with no vitamins.
My current CF treatments include pulmozyme, occasional ventolin, creon forte, a reflux medication, azithromycin, a vitamin & kalydeco. I have taken cipro occasionally and had IVs twice in the last 2.5 years, one time for my sinuses (which turned out to be the blocked blood vessel) and the other time was after south america / to maximise my health on kalydeco. This means I have not needed any IVs due to being unwell since being on kalydeco, compared to needing 3-4 admissions per year for the last 20 years. I have also not needed other nebulisers or chest physio since being on kalydeco, saving hours of time each day. I cough occasionally but seem to be clearing my lungs on my own without treatments.
This is my very exciting lung function graph showing how stable I have been for the first time in my life:
The small drop in 2013 was from my south america trip and the slightly lower numbers in 2014 were most likely affected by my inability to exercise and also to blow lung function tests properly. The peak in June 2014 was following IVs.
My weight dropped with the vein issue but I have plateaued now:
I will update soon hopefully with good news following the procedure.