Home Blog Posts Well guys, it’s been a little while!

Well guys, it’s been a little while!

July 16, 2018

Well guys, it’s been a little while!

So much has happened in the past year. I am currently admitted to TCH right now. Got a little under the weather with all my running around and it was time for a tune up. On the positive side? It’s been over 7 months since my last hospital admission. That’s something to celebrate if you ask me! When I came in my FEV1 was 34% and my weight was down 6 pounds. The doctors decided to put me on continuous Ceftazidime and Tobramycin as well as TPN and lipids, which is just extra fats and supplements they give through my IV to help add a little bit of weight. I am never quite fond of being hooked up to my IV 24/7 but that seems to be the best treatment to get things moving quickly. Today marks day 8, so we had PFT’s this morning. While we were expecting a jump, we did not expect the huge jump that we got! My FEV1 increased to 50%!! The highest since September of 2017. I also gained 10 pounds in just a little under 5 days. Crazy, right? We were so happy with the improvements I’ve made in just these last couple of days. Clearly the medication and treatment plan is working. As of now, the plan is to repeat PFT’s Wednesday. If there’s no change, odds are I will be headed home. If there’s more improvement, of course, we will stay until they stop going up! I want to be as well as possible before I leave here. Another goal going into this admission was to get my PFT’s in the mid 40’s low 50’s. If that happens I will qualify for a treatment study here at Texas Children’s. The study (new drug) targets those of us with CF which have only one copy of the Delta F508 gene. It has been shown to help stabilize PFT’s and weight gain. This is the final phase of the study before it becomes FDA approved and released to the public. Dr. Hiatt thinks I will really benefit from this study so we’re doing everything we can to qualify! Basically, this stay is crucial on getting all my numbers back up as high as they can be. I have a lot coming up this next year that I need to be healthy for! Be on the look-out for several new blogs coming up! I have a lot of exciting news to share with you guys! I am going to do better and try to post every week, things have just been so busy lately. I’m finally starting to slow down a little bit and have more time to write. Until then, I hope y’all are having a blessed week and remember, just keep breathin’ 🙂

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