Thursday, April 28, 2016

Updates Galore!

Big News, Big Times, Big Change:

I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF
facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!!

In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good number of people come (even though they RSVPed). That being said, those who did come I think did learn quite a bit and enjoyed it. Plus, more cookies for them. lol

I did record it (but my phone kept stopping, so I had to restart it and it got a little jumpy). However, I will be posting that to Youtube tonight! I have been so busy with work, licensing stuff, plus now is the crunch planning time for the CF Foundation "Suzanna Lee Memorial Golf Outing," one of Peoria's biggest CF Fundraisers of the year! Suzanna went to my clinic growing up and her parents started the event in her memory 15 years ago! So this year is the 15th year, WOW. Way to go!

The BIGGEST update: I got my Colistin!!! Finally! I have had it before (in fact I got it for a month in 2015, and then just a couple months ago in 2016 too). But since March they have been having trouble filling it. So I have that, I believe I will be starting that after this round of Cayston.

Also, in the next 8 days I have TWO great strides walks. So that is beyond exciting. I LOVE going to the walks! Who doesn't want to spend a day walking and talking with good friends, while raising funds for the CFF!

So lots going on, I'm just trying to keep on top of my health too! So far it has been okay, but I know I need to get more active. Going to go for a walk today with my sister (as long as it doesnt rain).

Keep your eye on my Facebook/ YouTube page tonight, the video should be up then!

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

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" ( - 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!

Tuesday, April 12, 2016

One Step at a Time

Newest Hospital Update:

As you may have been reading, I was hospitalized on last Wednesday (my 31st Birthday). Tomorrow will mark a full week in the hospital. When I was first admitted I couldn't have done a lap around the hallway without a huge cough attack. Today, I can do 3 laps (getting out of breath) with no coughing attacks! Whoot whoot!

I have been posting updates via videos on my Facebook Page. The last one I posted was "Not a Happy Camper" (where I didn't have any hot water for 4 days and I had been waiting for my breakfast for almost an hour and a half).  Good news. They did bring me a new tray right away and they fixed my hot water later in the day. Since my water wasn't fixed in time for my shower yesterday, they had me shower in the (empty) room next door. Haha, I was a little jealous of the windows next door...

(I mean look at that beach!)...

Haha, my room has birds on the windows. The beach is a lot nicer, but that's okay. At least I got a hot shower and since that food tray problem, my meals have been more accurate lately.

Now, for the health update:

Well, I did my breathing tests yesterday (PFTS) and Doc said I'm about 50% improved... I'm assuming since I was down around 15%-20% in lung function that I gained around 8-10% back. Doc doesn't like to bring up the numbers, since I obsess over them sometimes. I'm guessing I'm mid 40s. Doc said we are hoping to have me out by Friday :-) YAY! However, going home on IVs is not easy. So there is a lot more work ahead of me.

I LOVE the idea of being home and seeing Andrew, getting back to work, back to my life. BUT, it's not that simple. When I go home on IVs I still have to keep up with the complete hospital routine. Which means...

5am - take IV out of fridge
6am- 7am- Aztreonam IV runs
7:00-8:30am - albuteral, hypertonic, etc nebs & vest, clean nebs
8:30-10:00 -shower, food, etc
11-12:00pm -2nd set of nebs & vest, clean nebs
1pm -take IV out of fridge & eat lunch, pills
2:00-3:00pm- Aztreonam IV runs
4:00-5:00pm - 3rd set of nebs & vest
6pm take out of fridge IV and dinner/ pills
7:00-8:00pm Tobra IV
9:00-10:00pm unhook Tobra, take IV out of fridge, and do 4th set of nebs & vest
10:00-11pm Aztreonam IV
midnight - unhook & bed!!!!

Wake up at 5am and REPEAT every day! Since Andrew works 12-15 hour work days, it makes it a little harder. Being nurse and patient is tough.

So yes, while I am happy to go home (hopefully) this weekend and be with Andrew. I'm nervous I will get sick or run down trying to do it all by myself... But, one day at a time. Or more like 1 step at a time... Going to do a few more hallway laps tonight before Andrew heads home. Hoping to stay on the right track and get that lung function back!

Andrew works the rest of the week, but I was glad he got the 48 hours here that he did!

Keep you all posted and thank you for your love and support!