Friday, January 15, 2016

Many many thoughts

As I sit here on the exercise bike in the gym (yes, I'm exercising while writing this post--check mark for good CF multitasking skills!), I'm thinking about all that has happened in the last month. And trust me, it's been a lot that the blog world really doesn't know about. I'm trying to figure out where to begin and how to go about writing another blog post, and about 5 million thoughts pop in my head about things I need to write about. So, I'll just start from the beginning.

In December, I finished up my first semester of graduate school. The semester went by incredibly quickly, and I thoroughly enjoyed my classes and practicum experience. Moving to Dallas has been an adjustment for me. All my close friends and boyfriend still live in Waco, and my family does not live near Dallas. In the summer, I embarked on this great adventure away from people I felt most comfortable with, and I can't say it's been easy. Thankfully, my sister lives pretty close, and I've made some great friends in grad school. Yet I still miss Waco and Baylor and Austin tremendously. I miss the people I would hang out with all the time. I miss knowing where to eat or where to go have fun. I miss being a Baylor student and getting to go to sporting events. But I know Dallas is where I'm supposed to be at this time in my life, and I know the grad school I chose is the best one for me.

In December, I also got to start a Vertex trial. I know, so exciting!! In the CF world, Vertex is doing HUGE things. Their drugs are the only ones right now meant to target the underlying cause of CF. In order to be diagnosed with CF, you have to inherit 2 faulty mutations, one from mom and one from dad. The most common mutation is dF508. I have one copy of dF508 and one of a much more rare mutation, V520F. The Vertex study I am in is for people with one dF508 mutation and one "other", which encompasses a whole lot of mutations listed in the Vertex study protocol, including, you guessed it, V520F.  I was so excited when I got to go in for my screening visit. This study has the potential to improve my quality of life, if the study goes as planned. However, I had multiple problems getting the study up and running. For starters, the screening visit sweat test came back with inconclusive results because they said they did not collect enough sweat. For those of you who do not know, a sweat test is the key test to determining if a person has CF. If the sweat chloride level is above 60, the person has CF. if the value is under 40, the person does not have CF. Between 40-60, the person may or may not have CF, but if they do, it is very mild. Participants in the study must have a sweat value higher than 60. Because the sweat value did not come back, I had to get the test redone. I was told that if I could find my sweat test from when I was a baby, that could count as my sweat values. However, no one seemed to have that very important medical document. Instead, I had to have the test done at a different facility, and they performed the test a little differently than they did at my first study visit. A week later, I was called and told that my sweat values were in the 30s. I knew this was completely wrong. I definitely have CF--there's absolutely no question. From my PFTs being in the 50s, to my intense stomach pains when I don't take my enzymes, to the fact that my hands turn prune-y within seconds of being in water and my body literally sweating salt crystals in the summer, there's no doubt I have CF. Meanwhile, I found my sweat test from when I was a baby. My pediatrician from birth-1 1/2 years old still had my records, praise God! It showed that my sweat values were in the 110s, way beyond the requirement. Vertex debated my case for awhile but finally decided I could start the study as log as my day 1 sweat test came back high enough. Sure enough, it came back in the 100s. So folks, it turns out I do still have CF.

Today was my day 15 study visit. I've been taking either the drug or the placebo for 2 weeks, and I'm trying to play it cool and pretend like I'm not taking anything different. I don't want to psych myself out or go crazy wondering what drug I'm taking. I continue the study for a total of 12 weeks. I'm praying for great results!! I honestly am still in shock that this whole study is happening. It seems so surreal to be involved in something that could be so great for the cf community.

I also started my second semester of grad school this past week. It's been a great week, and I'm so excited to get into the meat of my classes and practicum. This semester will also include plenty of trips to Waco, babysitting, and wedding planning for my awesome twin sister's summer wedding. It's going to be a great time springtime, and I'm so excited to see what God has in store!!

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