Skip to main content

Cystic Fibrosis Clinic Results. Not what I wanted, but...

My Results:

I went down in lung function 2% points and lost  a couple more lbs. So I'm at 102. I was really disappointed with myself. I know that I have been doing  my meds and I have been doing my stomach feeding most nights too.  I have been making the right decisions and all my friends have been very supportive. I bring my nebulizers over to their houses to do them if we are hanging out, etc. It just wasn't enough this clinic. I really thought there would be a slight increase. However, I haven't been jogging since it is cold outside. And I know waitressing has been making it hard to gain weight. Plus, its winter. It is always harder for me to stay healthy in the winter.

Dr. B was still pleased. He said "I should give myself a break, I have been doing everything he asked, I ran a 5K, and I'm still doing well." And that is true 2% increase isn't a huge decrease, only if I continue to decrease then there is a problem. Dr. B told me that I need to focus on the fact I have come up from being in the 30s just 2 years ago. But

And most people see it as "well, if you just stay where you are and don't decrease, then it's good." However, that's not good enough for me. It is really hard for me to bring my numbers up,  so it takes time. It s even more difficult now that I'm getting up higher. BUT, I want to continue to increase. I have things I want to accomplish in life and I don't want my CF to ever hold me back.

 2 years ago I made a committment to myself to bring it up as much as possible. I was shooting for lung function to be in the 70s  by the time I was 30.  I can still bring it up, but this clinic has showed me the extra effort I'm going to have to give in order to get there.

Okay, 3 more months, I will give it my all and see what happens!

Also, besides my slightly "bummer" clinic, the day was very nice! Ryan and I went to Abt Electronics, where a salesmen talked to us like we were looking to buy a $20,000 mattress.... I take it as a compliment that he thought I could afford that    :-) We also passed a really cool house, so naturally I turn around and creepily take pictures of it.  (I love houses as much as I love Rocks)

 After Clinic we stopped in Elmhurst to grab some Jamba Juice, cuz I love it (ps. Bdubs, Cocomero, and Jamba were all across the street from each other- it was like all my common/favorite places from College). We did a little shopping and I bought the newest book in one of my series! So the trip to/from Clinic were fun and I have had way worse clinics in the past. So....

Just gonna have to step up my game!!!!!! Bring it!

Comments

  1. When you work your butt off trying to improve your lung function it is disappointing to see it go down even if it isn't significant. I have so been there many times! Keep up the good work because I am sure it is helping your health even if the numbers don't show it!

    ReplyDelete
  2. My son has CF (he's only 17-months-old) and we've used MCT oil to get his weight up. It's derived from coconut oil and is clinic-approved (we go to Lurie.) I mix about 2 tsp. of it in 8 oz. of liquid and mix it up really, really well. He's really picky about flavors and doesn't seem to notice the flavor. There are 40 calories in each tsp. and it's supposed to be easier for CF-ers to digest. If they've tested you to make sure you don't have an exacerbation, then you might consider adding it to liquids you're drinking. (I don't know if it would do well in water, but it should work with other things.) The extra calories add up during the course of the day and might help. Good luck!

    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

Post- Surgery Appointment

Post Surgery Appt: As you prolly know, I had Laparoscopic Triple Hernia Surgery last Tuesday. Here was a picture of me devouring a piece of bread so I could go home afterward the surgery (4 hours post surgery and 20 mins post waking up from recovery). I was ready to go home! Today I had my post surgery check up. He said everything in the surgery went well and besides the finding the 3rd hernia there were no surprises. He pointed out where the staples/stitches (they are holding the mesh in place) are in me. I have two on each side at the end of the mesh (so 4 on top) and two down farther in my groin. Apparently, I just have one huge piece of mesh that runs the width and length of my whole abdomen/groin area. Bahaha. I am Inspector Gadget after all. He said a few more weeks before I can lift stuff or exercise. Also, he said the area where the staples are will hurt when bending or twisting. However, I only notice really when I twist or turn too fast. Overall, it was a nice appointment

Big Update Time & what I need!

Time Flies: I've been blogging about all these separate things I have going on in my life. My lung function drop, the hospital stay, my stomach/ GI issues, the surgery, the Princeton IL CF walk, my fight with insurance for my Cayston medication/machine, and soooo much more. So here's a bit of a catch up for everyone! Let me start at the very beginning: read my CF history in this brief post here . Now let's skip ahead to the last 6 months. From September 2014 - Feb 2015 I lost 3 CF friends ( it was really tough). In September my best friend with CF (from childhood & on) passed away from CF. I wrote a post about her journey, love for life, and how she was (& is) my inspiration to fund raise (read about Laura's Journey here ). Then in October I got my G-tube taken out/ fistula fixed and removed. YAY YAY YAY! The abdominal surgery was my 15th surgery, so I recovered pretty quickly. I'm beyond thrilled to say after 15 YEARS with a G-tube and needing to u