Tuesday, May 12, 2015

Angers, Orkambi, and Running

I have left the vast lands of the USA. A brief stop in Ireland to check in with Prof McElvaney and to get a lung function. My PFT (Pulmonary Lung Function) went up by 4% since 6 months ago. Not bad I suppose! Other then that, nothing has changed. Thats always a good thing! I want to talk further on lung function increase and the new  drugs for DF508, which is titled Orkambi.
First of all, i am now in Angers, France. A lovely little town with even the easiest meal beating anything I tasted in America. Super markets in America have really messed things up for everyone in the country. 
Anyway, here is a picture I took from the roof of the apartment I am staying in. 

I love little towns that haven't been taken over by modern day "niceties". Wifi is bad here which makes it good. There isn't 20 different options of Wifi on my phone. Admittedly, it does make it harder to talk with Yas and my family but at least I can still talk with them everyday. It makes me look forward to have something at the end of the day. 

I love running around the streets exploring what the place has to offer. I don't go with a certain plan. I just run. Buddhist might call it Mindfulness Running. You get a feeling to turn right or left, so you take that turn. You are in the moment and enchanted with what lies ahead. By doing this, you get surprised as to what you see. I took this photo of a lovely fountain in the middle of this square. 

So let me get back to the Orkambi drug. Orkambi FDA Approval. For nearly 2 years I have questioned myself on whether I should go on it. I turned down to go on the trial, and I don't regret the decision. So should I go on it? Here is my reasoning. 
1) At the moment, my lung function is increasing every time I go to have a check up. 
2) I have reduced the amount of medication I take. All I take now is Creon, Tobi/Cayston. Thats it.
3) Will it create damage to other organs in my body?
4) My weight hasn't changed (apart from when I dropped to 51kg but thats for a different reason)

With those 4 point. I can't really see any pros for going on more medication. Yes, if my health deteriorates, i would of course go on it. No question. The temptation is to go on Orkambi as it's like giving a car a turbo engine. It will make it faster. I don't know if that simplifies it too much. 

I shall try to update the blog more often. Sorry on the slow updates. 

Bon Nuit! 


  1. Why is your lung health improving? What are you doing different?

  2. Everything. I do everything different. I don't listen to the dieticians or the physios. If i did, i would probably be declining. Treating CF is like a hobby for me. I exercise every single day, and don't go more then 3 days without a minimum of 30 mins running. Sometimes I will run around 20 miles. But i have been running all my life. This isn't just overnight. According to the Physios, i wasn't doing enough to help my CF. they wanted me to stop doing as much running and start doing shit like Pep or flutter etc.