Blue-Eyed Breather

I was always told I could do anything. That CF couldn't stop me. That, even though my day to day life looked a little different with treatments and pills and hospitalizations, I could still be "normal". I'm finding out now that's not necessarily the case. Growing up, I knew I was different, but I still functioned like a normal kid. The only time I remember CF limiting me was my freshman and sophomore years in high school. My doctor, mom, and I made the decision to sit out of marching band my freshman year and to keep me on the sidelines running the metronome and helping how I could without actually participating my sophomore year. Junior year I was finally able to join marching band, and my senior year I was a drum major, so CF didn't limit me that much by the end of it all. I finished college in four years with a major, a minor, honors, and summa cum laude. I am in grad school now and will graduate on time summa cum laude with my masters in speech pat...

If you're going to read this post, please promise me this: you will read it all the way through AND you will try to read it from my perspective. Deal? Okay, let's proceed. I haven't kept very quiet on social media about my opinions on the healthcare debate. However, you can only write so much on a short Facebook post or tweet. I am going to flesh out my ideas on healthcare and present to you exactly why I believe what I believe. 1. If you have read any of my blogs in the past, you know I have cystic fibrosis, a genetic, progressive, life-threatening disease. My healthcare costs are undeniably massive. My family maxes out on our out of pocket deductible within the first month or two of the year, depending on what is going on in my life. Obviously, my family has to have the best coverage possible so that I can get the medicines I desperately need. Before the ACA (when I was growing up), people would ask me what I wanted to be when I grew up. Often, I didn't know the a...

As you all know, I love to read. Here are the books I read in 2016! Let me know if you have any favorites I should read in 2017 :). Thinking in Pictures by Temple Grandin The Journal of Best Practices by David Finch The Brain that Changes Itself by Dr. Norman Doidge The Diving Bell and the Butterfly by Jean-Dominique Bauby Among the hidden by Margaret Peterson Haddix Among the impostors by Margaret Peterson Haddix Still Alice by Lisa Genova Schuyler's Monster by Robert Rummel-Hudson Why not me by Mindy Kaling The Jungle Book by Rudyard Kipling A Midsummer Night's Dream by William Shakespeare 5 love languages by Gary Chapman Fahrenheit 451 by Rat Bradbury The BFG by Roald Dahl Unbroken by Laura Hillenbrand 41-A portrait of my father by George W Bush The Meaning of Marriage by Tim Keller The Secret Garden by Francis Hodgson Burnett Pollyanna by Eleanor H. Porter Life from a CF Cornerman by Raymond Poole The Magnolia Story by Chip and Joanna Gaines

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 C...

As most of you know, for the past 7 months, I have been participating in a Vertex clinical trial testing a drug called VX-661 in combination with Ivacaftor. On Monday, Vertex released a statement saying they are stopping the trial for people with one copy of deltaF508 mutation and one copy of another minimal CFTR function mutation (what they refer to as "het-min" mutation combination). Meaning my part in this study is finished. The results thus far showed that the drug was not providing meaningful benefit and therefore was not worth the time, effort, and money to continue studying. This drug combination is still being studied in other mutation combinations and is thought to be more promising. When I heard the news on Monday, I was filled with mixed emotions. For starters, I so desperately want there to be a cure for CF, and we're so close I can almost taste it! Yet we're not there yet, and my patience is growing thin waiting. Also, I've seen so many great succes...

I like to make life difficult. I try my best not to, but it just always happens. Sorry friends and family who have to deal with me ;). I think it's part of the cystic fibrosis code that nothing health-related can ever be easy! I started on IV antibiotics on August 2. By this point, I had been on oral Bactrim for 3 weeks and a course of prednisone to help my struggling lungs. My lung function was down to 49%, down from 60% in May. The plan was to start IV Ceftazadine and IV Levaquin for 3 weeks, which would finish just in time for my fall semester to start back up. At the beginning of the IVs, I felt like I was coughing up a lot of gross stuff and getting the excess mucus out of my lungs. However, I did PFTs again a week after starting the IVs, and the results were disappointing. Even though I had been doing 4 breathing treatments a day and exercising twice a day, my PFTs had gone down to 45%. My doctor checked my most recent sputum, and the sensitivities to the antibiotics had ch...

Nursing care is not for the arrogant. You have to be willing to learn. You have to be willing to listen. You have to be willing to say "I'm sorry, let me fix that". Nursing care is not for the insecure. You have to go into a patient's room with the expectation that you're going to do everything right. You have to come across confident and secure in your knowledge. Nursing care is not for the unorganized. You have to know when medicines are due and bring those meds at that time. You have to manage several different patient schedules and keep track of how all your patients are doing. Nursing care is not for people who don't like people. When someone needs a nurse,  they are sick and usually feeling pretty crummy. Patients shouldn't have to also deal with rude nurses or people who you can clearly tell don't like people. Nursing care is not for the faint of heart. It's hard working in the hospital, seeing so many sick people per day. Some peopl...