Skip to main content

News from my appointment

Everything at my appointment went fairly smoothly. My PFTs were down, as was my weight. Those were obviously negative aspects of the appointment. However, my doctor and I talked a little bit about CF research, and there is some incredible progress occurring!! As you may know, the FDA just recently approved a new drug to be released to the public that has shown to treat the cause, not the symptoms, of CF in patients with a specific mutation. Here's the link to the CF Foundation website that explains the medicine much better than I can explain it.

Anyway, Kalydeco is now being tested with another drug to help patients with the most common mutation that causes CF, deltaF508. This study is in phase 2 trials. My doctor told me at the appointment that I would qualify to be a study participant in these trials because I have one deltaF508 mutation, am over 17, and have PFTs that re above 40%. This is all SO SO SO exciting!! I would participate in a study like this in a heartbeat. This medicine doesn't just treat my symptoms. It could potentially treat the cause of my CF! Do you realize how exciting this is? I honestly never would have believed you if you had told me that scientists would have the potential to cure my CF in my lifetime if you had told me that a couple of years ago. But here we are, living in 2012, with absolutely incredible scientific discoveries occurring so quickly I can hardly keep up with them. I am praying for a cure, for the medicine to go through the trial studies as quickly as possible, for the FDA to approve the medicines quickly, and, if at all possible, for me to be able to participate in future studies. I'd appreciate it if you'd pray alongside me. We live in an exciting time, my friends!!


  1. Oh Emily!!! I wish you would publish your blog to your Facebook page so that everyone could celebrate this incredibe news with you!!
    I have had you in my daily prayer journals for years and will continue to have you there until you are cured and beyond!
    Your wisdom and faith inspire me constantly!!! -- Thank you for your boldness and your courage.
    Continually praying until CF is in the history books as a former illness that used to affect many!!! Love you precious one!!!


Post a Comment

Popular posts from this blog

Exciting news!!

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes!

Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because CF…

End of semester update

The past few weeks have been rough.

I got a cold about 3 weeks ago. No big deal, right? I hadn't gotten a cold in 10 months, which is basically a record for me. Surely my body could fight a cold off. Boy, was I wrong. After a week of fighting the cold, I started running a high fever and felt like a truck had run me over. I finally called the doctor for some reinforcements and started on an oral antibiotic and a course of steroids. Meanwhile, my school semester had just picked up, and I was down to the last 2 weeks of school. I had to finish a research paper, take 2 finals, write a final progress report for my practicum, and give really good, productive therapy. After 4 days on the antibiotic and steroids (Monday with one week of school left), I still was feeling crummy. I checked my oxygen and noticed that it was low--running at about 90-94%. I'm pretty positive the cold had turned into pneumonia. Even walking from my bedroom to my living room made me winded. It took me two-th…

A note to incoming college freshman

Recently, I was talking to a young woman who will be starting her freshman year of college in August. She didn't ask for my advice, but I gave it anyway. I tend to do that sometimes--blame my desire to help other people succeed as best as I can, I guess. Anyway, that got me thinking, what would I write if I were completely honest and vulnerable with incoming college freshman? What would I tell them that no one else seems to tell them? My freshman year was only 5 years ago, so my memories are still fresh. I came up with a list of things I found out to be true my freshman year. They may not all be true for you, but I hope and pray you gain some insight out of the lessons I learned.

1. Join a church and get plugged in to a small group. This should be your first order of business the minute you step on campus. Besides, you know, finding your dorm room and where all your classes are. Getting in a small group was literally the best thing I did freshman year. Not only did I start forming…