Thursday, January 14, 2016


Staying Focused:

I'm trying to stay focused and keep on top of my health. But I do struggle and it can be hard sometimes. In October of 2015 my lung function was around 50%. I like to be around 60% but in the last year or so I have struggled to get back there. I hit 64% once after IVs in 2014, but since then I have been around 55% most of the time. Overall, I had gotten used to this and didn't think it was a big deal. But then slowly throughout 2015 I kept decreasing bit by bit. It's tough seeing those numbers drop at each appointment. Tons of questions race through my mind.
- what if I can't get my lung function back?
-will I always struggle to breathe? 
-how will this affect my future, kids, Andrew, etc?

So in October when I was 50%, both Doc and I knew, I had to be careful.

One cold, one infection, and I can lose a TON of lung function and it gets harder to get it back the older I get. I'm allergic to Keflex, Leviquin, and Bactrim (along with some pain meds). Which means to fight my psuedomonas (the CF bug I have in my lungs) can be a little difficult. There isn't a single antibiotic (oral version) that I can take anymore. And the last time I was on IVs I didn't respond to them (because I only have 3 I can use and over the years I'm becoming resistant to them).

picture: Andrew & I at doc's and sporting our new CF Foundation Fleeces :-)

So needless to say, being careful not to get sick is an understatement at this point. We try. Andrew and I both get flu shots, family & friends avoid me if they are sick, but around Christmas this year I ended up sick. It just happened. When I went to the Doc's and did my lung function tests, they were horrible (which you may have read below in my last post). I did two rounds of breathing tests, because they wanted me to do a set of nebulizers to see if they would improve. The first set showed my lung function at 36%. 36!!!! That's almost within transplant range, scary to see how one cold or infection can drop your health soooo much!

Well, the second set improved, but not much. Our plan was to get a new antibiotic nebulizer (Colistin) and have me do that on top of my regular nine breathing treatments, plus add a week of prednisone to the mix.

As you may have read on my Facebook page, I'm having difficulties getting Colistin covered, but I did take the prednisone and I added in an extra set of nebulizers, plus another 30 minute vest treatment a day. On top of this, I decided to use my fitbit to encourage me to walk more & calorie count. I'm caloriescounting to make sure I eat a surplus amount of calories, after deducting the calories my Fitbit says I burned throughout the day.

So in the last 2 weeks I basically have lived like a robot, but I think it was worth it! I went back to the doctor's yesterday and re-did my breathing tests, etc. In the two weeks, I have gained 2 lbs and brought my lung function up enough that I feel confident. Doc and I can still tell I'm not back to "my old self" yet, BUT I saw improvement and I don't even have the Colistin yet!!!

What does this mean for me?

Well, we still are concentrating on getting that Colistin, I need it to give me tthat push. But, it shows my robotic, scheduled-out lifestlye is working. I was honestly, really scared at the thought of being in the 30s for lung function. I mean without my responding to IVs and oral antibiotics, I don't have many options. Which also means not so good news for transplants for me in the future, so I don't want to end up in that position.  I saw in the last two weeks that if I am really dedicated to my health I may be able to see continuing increases in my lung function and perhaps be able to once again be happily in the 60% range for lung function.

This means a typical day will be planned out. I want to keep the schedule I had for the last 2 weeks and see if I can REALLY make a big impact on my weight and lung function by my next appointment.

 picture: a glimpse at my meds shelf in our linens closet...

A typical day will be as follows:

8:00-8:30am wake up, eat breakfast, get morning pills and nebulizers ready.
8:30-10:00am morning vest and nebulizers
10:00 clean med cups, drink extra ensure, pack bag & lunch for work
10:30-11:00 shower, get ready
11:00-2:00pm work at office & eat lunch at work
2:00-3:30pm home for afternoon vest and nebulizers
3:30-5:00pm eat snack, clean nebs, run errands, clean, etc
5:00-7:00 dinner, (my free time)
7:00-8:00pm get nights meds ready, work out/walk for 20 mins
8:00-10:00pm night vest, nebulizers, pills
10:30-11:00pm try to fall asleep!

I haven't hung out with friends or family in the last two weeks, because I feel like every minute I have goes to "eating, walking, or doing meds..." But I have to keep focused.

I will reach the 60% lung function range and I plan on staying there! Andrew and I have too many amazing goals this year to let my health stop us from reaching them! We want to own a house, be parents, and continue enjoying our careers, etc. So please help me to stay focused and next Thursday I have another appointment. We will see where I am then :-)

Oh and fingers crossed for Colistin! Keep you all updated and thank you for your support. It's going to be a very difficult and focused week ahead of me, BUT I CAN DO IT!!!!

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