Kalydeco - 13 Facts

You most probably realized that my updates became less regular lately. This surely is a good sign - it means that I can live a pretty normal life recently. It's no longer the all-energy-consuming fight against the disease, many things became easier and every day life just feels better. I'd like to put down 13 points on Kalydeco and its effect on me:

-12 months I've been taking Kalydeco now.

-11 months and three weeks ago I had my last IV therapy which means since I started Kalydeco I never had to do an IV again.

-10 kilos I gained during the first two months. From 66kg I went up to 76kg. This didn't feel right though and therefore I reduced it on purpose to 72kg. I am able to keep this weight without any effort. No longer do I need to fight for every single pound, no longer do I need to take 800 calories extra per day in drinks.

-9 years ago I had may first IV therapy. On May 8th 2006 I was the first time in hospital as an inpatient. Back then they told me that I have to get used to this and that I need to do this most probably once to twice a year.

-8 units of Insulin I had to take for breakfast a year ago. Due to the reduction of prednisone, the increased physical activity and the better general condition of my Body I could reduce it to one or two untis.

-7 nights per week I had to take oxygene to sleep - 1.5l/min. It helped me to recover quicker. Since my oxygene saturation improved to 95-97% I stopped this recently to see whether I really still needed it. I realized that I don't feel a difference when I wake up in the morning and therefore I sleep without additional oxygene now.

-6 right in lotto, that's how my doctor called it a year ago when he provided me with the news. I carried exactly that extremly rare mutation for which they developped a medicament. Meanwhile I fully agree with his Statement.

-5, but usally more like 10 mucus I was able to cough during a therapy session before Kayldeco. Nowadays I need to be lucky if I can produce one. There's simply nothing down there which I can mobilize.

-4 crystal clear improvements: improved oxygene saturation, increase of weight, much less coughing, no IV therapies. That's how Kalydeco worked on me.

-3 was the number of patients in Switzerland who were able to take Kalydeco a year ago (including me). Unfortunately only three persons for whom there was hope. I don't know how this number changed since then, but I'm sure it's still just a handful of people. Luckily Vertex continued it's research and the plan to come out with a new medicine which is suitable for many many more patients. They invented a similar product for people with a double F508del mutation, which is the most common one. Thank you Vertex! -> for those who are interested, try Google!

-2 pills a day... 2 simple little pills with the size of any other pill. I always dreamt of a medicament which can reduce the impact of CF. When I thought of that, I always imagined huge shots, IV therpies and an incredible effort. Never ever was I thinking of a little pill. Two of these small friends and the effect is sincerly unbelievable.

-1mg of prednisone - that's the dose I'm taking meanwhile. Before I started it was 20mg (!) and during rough times up to 50mg.

-0 days of sickness in one year. ZERO. Not a single day I was sick and couldn't go to work. For many years I had to stay home or in hospital for at least 14 to 28 days a year, sometimes even longer. When I started going to work despite the IV therapy this helped reduce the number of days off sick, but less than 8 days I year I never achieved. Now it's zero. Tat's even less than many "healthy" persons achieve. (And yes, touch wood!)

That's how I would summarize my year with Kalydeco. Many things became better, nothing got worse, only FEV1 could improve a tic more. But even if it's remaining the way it is now, I'd be more than happy. I do hope though, that also my health insurance realizes the impact that Kalydeco has on me and does not only focus on FEV1 since for me it would be an incredible set back if I had to stop taking Kalydeco. Lucky enough, I already received the approval for the next six months and maybe I manage to improve FEV1 also until september.

I'm not sure if it makes any sense at all to put the following on the English version of my page, but nevertheless I'll do it. There's a famous swiss radio presenter and comedian who suffers also from CF. He's kind of a role model when it comes to coping with the disease and he recently was on swiss television talking about his views. Unfortunately it's only in swiss german, but for those who understand a bit, here's the link (LINK  -> starting at 37:15 min)