Friday, July 24, 2015

The Decision Within - Guest Post Written by Somer Love

Whether we realize it or not, the human spirit yearns to be connected with those around us. To endure the triumphs and tragedies of life connected at the very core of who we are. We want to know and give empathy; walking beside each other through this beautiful journey of life. I am so very grateful for the fellow CFers, their families, and friends that have touched my life. It is with great honor I share this incredible Cyster (fellow girl with CF) with you all. She's changed and inspired many lives, including my own. A very special thank you to the beautiful Somer Love for sharing herself and her life living with CF. 

Somer is a double DF508, eligible for the newest approved drug, Orkambi, that combats the underlying cause of CF. This may sound like a dream come true for her, and it is, but it comes with some difficult decisions to make as well. Here's her story....

Love to Breathe - "Decisions and New Normals"
"I believe it is important to educate and raise awareness about CF and spread Love whenever and wherever I can. I want to change the world! I try to live each day to the fullest by keeping my hopes high, and dreams big!! I am 36 years old living with Cystic Fibrosis, and I am an active advocate in the CF community. Being diagnosed at 11 months old I was unable to make my own decisions. However, I am fortunate enough to have fabulous parents who chose to help fight my disease. When I was old enough I adopted my parents philosophy and joined the fight. This is my fight... 

When you're constantly faced with hard decisions in your life a crystal ball would really come in handy. I couldn't be more excited for the approval of Orkambi. I have been waiting quite some time for a stride of this magnitude, basically ever since I was in sixth grade and they had announced they found the gene that caused Cystic Fibrosis.

So you might wonder why I am not already taking this wonder drug?! Well, it's not that easy.... My lung function as of a week ago was currently at 28%, what does this mean? well it means that I have about 28% of my lungs left. So what comes easy for you may be extremely hard for me, or it may not even be a possibility. Don't feel sorry for me though, it's all I know and with each decline in my lung function, I find my new normals.

So back to why I'm not quite taking this drug yet, well remember when I said I'm always faced with hard decisions, well this would be one of them. Orkambi was studied in individuals with a 40% lung function or higher. When you initially start this drug your body is having a major overhaul this drug is unlike anything we have ever seen before, it basically corrects the underlying cause of CF. So basically it stops the symptoms before they develop... What?! This is HUGE now you know why I am so excited!!

So as you take that first dose of Orkambi your body is starting to correct itself and you basically become sicker before you get better. People have experienced tightness in their lungs, shortness of breath, they have even coughed up more mucus than they ever have before. What?! More mucus than ever before.... that symptom right there blows my mind. I mean I have some major mucus, I could fill a Dixie cup in 5 min if I wanted to. Could you imagine if I was coughing up more than that.... I'm imagining buckets. Probably TMI, I know but I can't even fathom it.

So when your lungs are basically cement and there isn't much movement going on down there to begin with, trying to move out gobs and gobs of mucus could be tricky. So right now I'm basically trying to do as much research as I can on Orkambi. I've been waiting to see how it effects others with lower lung functions and then I will decide when I will take this leap of faith, and be ok with not knowing what may come next. See I told you it was a hard decision.

I'm very grateful for these lungs of mine because currently they are stable and holding strong for me. I work really, really hard at it keeping them healthy and I have been out of the hospital for 17 months now, which is another feet in itself. I'm hoping that when I start Orkambi it can continue to keep me out of the hospital, stabilize my numbers for good and just maybe it will make things a lil more easy for me to maintain. I know Orkambi isn't a one way ticket on the easy train, because let's be honest there is nothing easy about CF. You still have to do all your treatments and be as compliant as possible. Currently I give 110% to maintain my health. In taking Orkambi I am hoping my CF maintenance becomes more manageable. So for now I am basically going to be a sponge and soak up as much knowledge as possible, or just keep searching for that crystal ball."

Breathe out Love
Somer Love

Please follow and support Somer's journey on Facebook at Love to Breathe and check out her website:


  1. So glad to have come across this post! I also have low lung function (a steady 30%) and am wondering if this drug is even a possibility with such low FEV1s. Please let us know if you decide to take it and if it works for you! Keep fighting and living life!

  2. My daughter currently has a. %42 lung function . We opted to do Orkambi and on day 7 her lung function is a 22. As I write this post we have just done a o2 level at 230 am and it is 88 this is concerning . We have done a lot of puking up mucus.