Skip to main content

Hello!

Hello blogging world!

It's been far too long. My fingers have been itching to write again, but I've been so busy lately, my writing has been pushed to the side. Hopefully I can regain a little bit of balance in my life and begin to write again more frequently.

So to recap my life: In May, I graduated from Baylor with a degree in communication sciences and disorders--speech pathology, a minor in linguistics, BIC honors credit, and highest academic honors. In August, I started graduate school at the University of Texas at Dallas. UTD has one of the best speech pathology programs in the country, and I am truly blessed to be here. I've learned so much in my last 2 months as a grad student! I love my classes and my practicum experiences, and I'm so excited to see how my journey through grad school unfolds.

Unfortunately, this semester my health has been a little rocky. My lungs were doing excellently--my PFTs were stable, I was set to participate in one of the upcoming vertex studies, and I was able to breathe about as well as I have in awhile. However, I got a cold in September that took a hard hit to my lungs. My PFTs dropped to 45%, a number I've never been close to seeing before. And honestly, I was scared. I was scared my health was taking a turn for the worse and it would be extremely difficult to get back on track. I was scared I was going to get behind in grad school and not be able to catch up. I was scared my short streak of decent health was gone. I was scared that I wouldn't be able to be in the vertex study. My doctor put me on three weeks of oral antibiotics with instructions to see her back at the end of those three weeks (which ends this coming Wednesday). Unfortunately, I can't say I'm back to baseline. I'm still short of breath at times and have a more frequent cough, but I am significantly better than 3 weeks ago. Hopefully that will show at the doctor on Thursday!

Also big changes: I've moved to a new city for grad school and changed CF doctors. While I loved the Austin center, that's way too far to drive for CF appointments, and I know I need a doctor close by. I love my doctor here, and the adult clinic is quite impressive. My doctor has made several changes to my CF regimen, so we're still experimenting to see what's best! When I went to the cf doctor in Austin, my mom always went with me to appointments. The social worker tried to get me to go to appointments by myself to "develop independence", but quite frankly I was plenty independent and just wanted my mom there to help me manage this gigantic disease and be my extra set of ears. Now that I'm in Dallas and she's not, I go to appointments by myself. It's definitely different. I usually have to end up emailing the nurse some follow-up questions I forgot to ask in my appointment. But I'm learning, slowly but surely. And I'm still so grateful whenever my mom does come up for occasional clinic visits to help me out!!

Enough procrastinating, I have a huge test I need to study for. Hopefully I will get back more consistent blogging about cf, my life, and my ideas and perspectives! Have a great Monday evening.

Comments

Popular posts from this blog

CF Letter 2019

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 ...

CF Letter 2020

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...

Traveling abroad

In May, I will be going on a mission trip with my church to the UK. I'm so excited to be a part of this mission team!! I know that God is going to work in and through us for His glory. However, I can't say I'm not nervous about taking care of all my health stuff while I'm over there. This will be my first international trip without my parents and first time to fly with all my medical equipment by myself. Even when my band flew to Seattle in high school, my mom was a chaperone and helped me check baggage, go through security and lug all my equipment around. This time, I'll have to manage all of that on my own (of course, the other team members will be with me, but I'll be the only one intricately connected to my CF and who actually knows what all I have to bring with me on the trip). On top of that, when we went to Europe for my make a wish trip, my Vest and compressor "burned up" due tonthe voltage difference, even though we used the power converter li...