Blue-Eyed Breather

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr...

It's been a while since I've written. To be honest, I've missed it. Not for the likes or the comments, but because I do my best processing through writing. And, as we all know, there's a lot to process right now. I decided now would be a good time to jump back into writing while I have the time. It feels like the world is in chaos. Coronavirus has lots of people on edge. Many of us are quarantined to our houses. Scientists are telling us it's going to get worse before it gets better. I saw today that we might have to practice social distancing for a year or longer until there is a vaccine. A year?? Humans are designed for community and to be around one another. How are we supposed to live like this for a year or longer? Right now, we are just starting to figure out what it means to live in the time of coronavirus. There is still so much unknown, and that leaves many of us, myself included, feeling anxious. So today, I wanted to share some positive things I've ...

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb ...

Dear friends and family, I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures.  My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs...

It’s the end of 2017. That means it’s time to send in those end of year donations. Want to give to some amazing charities actually doing good in the world? I’ve compiled a list for you!  The Cystic Fibrosis Foundation- Obviously, I’m biased toward CFF. They fund amazing research that is saving people’s lives! Don’t you want to be part of that? Not only that, but 90 cents of every dollar goes directly to advocacy and CF research. If you donate to the Cystic Fibrosis Foundation, you know your money is going to be spent wisely and is going to make a difference. Since cystic fibrosis is an orphan disease (that means it’s really, really rare), people with CF rely on your donations to fund research. As well, Congress just cut the orphan drug tax credit, meaning companies are not going to get as much incentive for studying orphan diseases and creating drugs to treat them. The CF Foundation needs people like you to donate to CF research so we can find a cure for CF SOON. —www.cff.org ...

My reading list is a little shorter this year than I would like (life, y’all), but I’ve still enjoyed reading a variety of books this year.  If you have any suggestions for my reading list in 2018, let me know! I’m always looking for a good read :). 2017 A Little Princess by Frances Hodgson Burnett Anne of Green Gables by Lucy Maud Montgomery  Snow White and the Seven Dwarfs by Jessie Brahms White Life Animated by Ron Suskind Emma by Jane Austen Alice in Wonderland by Lewis Carroll Rebecca of sunnybrook farm by Kate Douglas Wiggin Spillway by Deborah Jentsch Chasing sunsets by Karen Kingsbury Brush of Wings by Karen Kingsbury Lila by Marilynne Robinson The Confession by John Grisham Little Women by Louisa May Alcott Sisters first by Jenna Bush Hager and Barbara Pierce Bush The Road Back to You by Ian Morgan Cron and Suzanne Stabile  Where is the Mango Princess? By Cathy Crimmins 

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me.  I’m thankful for... My new husband ❤️ . As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical ...

Wow. What a day yesterday was. Here’s what happened: At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disast...

My port, aka my best friend If you have a chronic illness and are thinking about getting a port, you need to read this post. If you want to know more about ports, you need to read this post. Or, if you just like following along with me, you need to read this post!  I’ve had a port since 2009. After repeated blood draws and PICC lines, my veins were shot, and every time I needed IV antibiotics I had to have anesthesia to get a PICC line places. Typically, this procedure is done while awake, but my veins would no longer cooperate. Making the decision to get a port was not easy for me; I fought it for years. I did NOT want anything weird sticking out of my body. What 16 year old does! However, I finally caved and decided the pros outweighed the cons. The breaking point for me wasn’t the anesthesia from the PICC lines but the repeated failed, miserable blood draws. Nurses would poke and prod and dig just to try to get a vein to cooperate. Let me tell you, it wasn’t pretty....

I was doing so well. At the end of August, I read Gunnar Esiason's blog about beginning the Couch-5k program (you can read that here ). It inspired me to begin the program myself. I knew that it would be hard, but I also knew that I needed to push myself to exercise more intensely to help my lungs. Ever since I got the blood clot in January, my lung function hasn't been where I wanted it to be, and exercise is a tool that is very useful in maintaining as much lung function as possible. Since I've never been able to run even a mile without stopping, I was very intimidated and knew that I might need to add my own "steps", but I was so determined to complete the program, no matter how long it took.  The program begins with a 5 minute warm up and ends with a 5 minute cool down for every exercise. The first week, you jog a minute, walk a minute and a half for a total of 20 minutes. I breezed through the first week pretty easily. The second week, you jog a minute...

Today I was at church with my parents. After the baby dedication, the pastor prayed over the families. It was a fine prayer until he said something along the lines of "raising kids in a Christian home is the best way to ensure kids grow up healthy". This is when I opened my eyes and tuned out the rest of the prayer. Honestly, this is where I tuned out the rest of the service. This false narrative is exactly why American Christianity can be so out of touch with the world. No. No. No. This is not how God works. Yes, in a world without struggle and pain and heartache, I wouldn't have cystic fibrosis. But in our current, broken world God uses illness and weakness to prove His strength and power and love. If God wanted to heal me, I have full confidence that He could and that He would. I know there are people who have experienced divine healing. But in many cases, God uses our weaknesses rather than spontaneously healing us. In 2 Corinthians 12, Paul says, "But He (t...

Dear friends and family,  Happy 2017! I hope this letter finds you in good health and that you all are doing well. Since my last letter, I’ve had a bit of a crazy year. I have continued making my way through grad school, working in a variety of settings with a variety of clients. I have loved grad school and am so excited to become a speech-language pathologist! I know this is exactly where God has placed me. In May (right before the CF walk), I will graduate Summa Cum Laude from the University of Texas at Dallas with my master’s degree and will officially enter the working world. It’s a little terrifying because I’ve been in school for so long, but I’m excited to see what lies ahead. As well, I have another bit of wonderful news—I’m engaged!! Eric (my fiancé) is amazing and so supportive. He is not scared off by my CF, and he is so willing to learn everything he can about my health. We are getting married in July, and we are so thrilled! My health has been a bit rocky thi...

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...

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-t...