Friday, April 15, 2016

Hip Hip Hooray!

Cheering Today:

I'm VERY excited to say that I came home last night! I got home around 6pm, I unpacked my hospital bags, got all my meds sorted out, and made room in my medical/linens closet for the IVs supplies. Not to mention room in the fridge for the meds :-)

(does this look like your linen closet? It might if you have CF...lol)

If you read my last post you know that Doc re-did my lung function test on Monday. He said I'm on the right track and I have improved. I'm around I'm high 40s for lung function, since he said I am up 10% ish. I still have a ways to go. I'm usually around 58% lung function if I'm feeling well and keeping on top of everything. Which is super hard sometimes, especially on home IVs.

I posted the schedule I will be following now that I'm home in my last post. I REALLY want to see 60% again! I haven't seen the 60s since 2014 and it was only a short blip. It's not ALL about the numbers though. I get really out of breath in the 40s and I can tell I'm not back to my average breathing. I got winded doing 3 laps in the hospital hallways. Really think about this. I was down to high 30s... That's a 3rd working and 2/3rd of my lungs not working. Imagine breathing like that? With less than 1 lungs worth of breath, could you grocery shop? Could you do everyday chores? I couldn't and I dreaded not being able to keep up. I love being active and involved, so its tough when I can't keep up others.

I want to live a full and active life! I want to keep my career in Real Estate, be super involved in the CFF/Peoria Region, plus be able clean, cook, and shop as needed. Mostly, I want to be a mom and grandma! Andrew and the idea of future foster kids keep me motivated! I CAN DO THIS!

So here is my plan:

-this week I will be focusing on doing 4 IVs, 4 sets of nebulizer & CPT, and taking all my meds each day.
-I will do Real Estate work from my laptop at home & doing my Post-Licensing Renewal classes online
-I will keep blogging & pushing CF awareness (via computer this week)
- I will try to walk a little each day, pushing to go further
- I will focus on gaining my weight back  ( I dropped 8 lbs before being admitted)

(picture: meds in the fridge, yay!!!  I got the ECLipse Ball IV devices)

And that will pretty much be it :-)  I have my lab draws on Tuesday, my Doctor's appointment on Thursday (with hopes to end IVs on Friday).  I am SUPER bummed that I will not be attending the Dekalb Great Strides Walk. But any donations I would of taken there, I will just bring to the Champaign Walk!

As far as Colistin goes, the pharmacy & insurance say I still owe it out of pocket. So since I got nowhere with them, I called CFF's program "Compass" (www.cff.org) - it is a resource that helps CF patients with insurance issues. They have started the process, so hopefully it will get resolved in a week or so! I need that Collistin!

So I have a lot of work ahead of me to get my lung function back up, but I need to try. I'm not ready to let my lung function drop or decrease. Each decrease reminds me I'm getting that much closer to needing a transplant. To be honest with all my allergies I'm not sure I would be even be approved for one and it is something I want to put off as long as possible :-)

Thank you everyone for the kind words of encouragement and support via Facebook and Twitter. I even have a BFF coming to stay the next 3 days with me (Andrew is working doubles all weekend). It will be really nice to have Sarah here to keep me company and help me out! Then I just have Monday- Friday next week to get through and hopefully I will see BIG increases by Clinic on Thursday!







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