Skip to main content

Today's Cystic Fibrosis Clinic. say what?

CF Clinic Results & The Day with Ryan!

My day started off a little rough. My car wouldn't start. Its in my garage completely dead. I had to call my sister and take her car to clinic. I picked up Ryan and we headed off. We decided to eat first. We ate at Yardhouse, which is one of my two favorite restaurants in the area AND we happened to get very lucky while there! There was a Art festival going on in that shopping district. We got to see all the art and then go to my appointment.

Okay, I will get to the numbers!!! Well, my weight did go down from my last clinic. But I knew that was going to happen. It was 104 today and was 107 last time (1.5 months ago). However, he gave me scripts and orders for a new medicine for my "mummy disease" and wants me to get blood work done next time it happens, so we can see what is going on exactly. I also have an appointment for my mediport to be flushed with TPA and a consult for my G-tube to get a different size put in. So problems were solved!

AND my vitamin D is in the 50s now! After it being 25, 14, etc. It's now in the 50's. I just have to take the large 50,000 Units dose twice a week (instead of daily). Then I found out my lung function went from 58% to 61%. My goal was 60 for this clinic! I'm on my way to the 70s! Dr. B showed me that since I started with him in Feb 2011 I have gone from 48% to 61%. FREAKING exciting!

I'm on the right track and was so happy my clinic didn't turn out bad afterall. After Clinic, we drove to IKEA and Crate and Barrel. I had a ton of fun shopping with Ryan. We even stopped for DQ on the way home to top the day off! GREAT DAY!

I'm sooo ready to work really hard for the next 3 months to have an amazing clinic in November! YAY!

Comments

  1. Great news Cheriz! I'm so glad things are going in the right direction for you! Keep up the good work!

    ReplyDelete
  2. That is wonderful! Awesome news! Keep going strong!!

    ReplyDelete

Post a Comment

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...

Video Blog: Life in the hospital (as a child)

The daily life in the hospital! Most people cringe at the idea of a hospital. However, when I was little I never minded going into the hospital. I usually would have at least one other friend with Cystic Fibrosis to hang out with there (before we knew about the "CF Bugs"). I didn't love being sick, but I loved my CF friends that I would hang out with. Also the hospital, nurses, and my parent's tried to make it a "normal" environment. I got up and put on cute clothes, "walked to school", flirted with a couple CF boys, did homework, came "home" (back to my room), my friends would ask my parent if I could go play with them. We'd hang out in the play room or go on a walk with one of my parents! My dad loved taking me on walks and I LOVED going on our walks! Here is a video blog of the route we took and bit of information on what is was like growing up (for a chunks at a time) in the hospital! (it is posted via youtube, let is dow...

Orkambi & the Hospital

I haven't really felt up to blogging or doing anything since I got sick. I have been having a few breathing problems and more asthma attacks the last two weeks. I had my regular Cystic Fibrosis Clinic check up on Tuesday of last week. I knew it wouldn't be great, but I had no idea how bad it really was... At clinic we found out my lung function dropped majorly from my "baseline" of 58% to around 38%.  My Respiratory therapist responded "Dang, that's transplant range, we gotta get those numbers up." It's scary to think one sickness, one medication and my lung function can go from 58% to 30s. Where I struggle to breathe and could be listed for a transplant. But I have faith, hope, and trust. This is why. My doctor(s) at the CF Center are very proactive! My doctor told me I had a couple options: 1. be admitted 2. Stop Orkambi 3. Keep doing Orkambi, but switch up some of my meds at home and call in a few days for update Of course... I decided...