Thursday, July 11, 2013

Clinic Day & Positive Thoughts Thursday

I had my CF clinic appointment today and number-wise it wasn't the best, but feeling-wise it went well. Everything's pretty much the same as my last appointment - my lung function is still hovering in the high 70s which I really don't like to see, but I've been feeling really great lately. My weight is about the same - today it was 108.5. Thankfully I have a wonderful relationship with my doctor and I was able to explain to her how I was feeling and she understands that sometimes the numbers don't reflect that. She just told me not to worry or focus on the numbers which made me feel long as things don't keep going down, that's what matters. Of course I'm still trying to increase my weight and lung function (always!), but for some reason it's just sticking where it is right now, so I think I'm going to really have to take advantage of the next month and really kick my butt into gear. I need to make sure that I'm consistently exercising and consuming at least 2,500 calories per day, especially before I head back to work.

We did discuss the possibility of adding Kalydeco into my life if I can't seem to get out of this rut which really makes me excited. When Kalydeco first came out I was honestly a little hesitant about going on it. In a weird way, I felt like if I started taking Kalydeco, then I was "giving up" on fighting CF myself. After typing that out, it sounds totally strange, but that's the way I felt. I feel like I've been doing a really great job keeping myself healthy and I didn't want to....I don't even know how to word it... I was also concerned that 'What if I was taking it for several months, saw a great increase in lung function, and then for some reason I had to stop taking it and then my lung function would go back down (to the 80s which is still 'normal') and I would feel like complete crap.' I was nervous that once I started it, it would be something that I'd never be able to live without, something that I'd rely on forever.
But after a great discussion with my doctor today, she put it in perspective for me. Everything that I'm doing now -Vest twice a day, six-eight nebulizers a day, countless amounts of pills, etc -I'm going to rely on those forever to keep me healthy, so what's another pill? Especially if it's going to change things for the better, increase my quality of life, and possibly reduce the amount of medication/treatments I do now...duh! What was I thinking?! So the plan is to see how the next few months go and at my next clinic appointment in October we'll make the decision on whether to start the approval paperwork, or to keep it on the back burner.

And finally, I've totally been slacking on my positive thoughts Thursday posts over the past few months, honestly, because we've been completely stressed...which is probably when I should be doing it, but either way here's some recent positive thoughts:

  • We are 15 days away from our scheduled closing date on our first home! As long as everything keeps going according to plan we should be moved in before August! Yay!
  • The possibility of Kalydeco entering my life is starting to get me really excited it. Of course it may not be until the end of this year, it's something that I'm looking forward to. :)
  • I love summer break! Not a huge fan of summer weather, but the time off is amazing! I've been able to do way more this summer than I even thought I was going to do and there are still several more fun things one on the list: Country Thunder! One week from today! Oh yeah!
  • Our new little guy, Ozzie, is adjusting very well to life in our home. He has an enormous amount of energy and he's hilarious to watch when he's running around! Archie is also doing a wonderful job being patient with him and playing (usually) gently with him. 
Can you tell who's who?! Haha...Archie's (4 yrs old) a big hefalump, but
Tim thinks Ozzie (3 months) might get to be about his size...we'll see. :) 

1 comment:

  1. I'll be really interested to hear how your next clinic visit goes and if you are starting on Kalydeco or not. I'm glad you've decided that it's not you giving up fighting yourself, and I hope if you do start it that it makes a dramatic different in your life. Good luck on getting your numbers up until then though. Could you be culturing something new, maybe?

    Also, Ozzie is WAY TOO cute!! How adorable!