Skip to main content

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!!

Comments

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…