Skip to main content

My Favorite Post of the Year!

Every New Year's I post a yearly review of everything that took place. It is surprising to see how much has happened and how much of a roller coaster ride life can be.

I'm ending this year with not-so-great doctor's visit with my lung function back in the 30s, but I truly believe in 2017 it will all get better. My lung function, health, and life in general. I am doing a lot of outpatient tests right now to see what it is going on in my lungs ( I had some stuff show up on my last CT scan). So in January I have another appointment to get a plan together. Whether it be an admission or home IVs, or something else. One day at a time, but for now let's look back on this year!

Here is 2016:
January & February
Fighting Insurance for Colistin because my lung function was low, which
is why I had to cancel my eye surgery.




March
I was the guest speaker at the Annual CF Meeting & honored
to receive an award "2015 Great Strides Partner of the Year"

(PICTURE: Myself, Red Dog CF Non-Profit, Colton Underwood, and CFF Peoria director Kellie)


April
I was admitted on my birthday. One week in hospital 
and one week with home IVs.
Also, finally got my Colistin approved!



May
I switched back to my Peoria CF Clinic (after 5 years with Doc. B). Big decision. 
My family & friends also hosted our Right Spice CFF passion fundraiser ($2,120)



June
The Princeton Walk raised over $13,000 and
we bought our first & forever home! 



July
I started doing 5ks. Here is one I did with my sister.
I do ALS 5ks for my friend, Sean (who has ALS)



August
Celebrated our first year of marriage together. 



September
I was finally healthy enough for my eye surgery
Also finally bought a medical alert bracelet for my Morphine allergy.



October
I started ORKAMBI
and I wrote my first guestblog for the National CF Foundation Website HERE!



November
Spent half the month in the hospital, 
but my family celebrated Thanksgiving in my room with me!


December
I was thrilled to be released from the hospital in time for Christmas
 and I guestblogged on the CFF Website HERE 
(about our future & how CF affects our family planning.)


Hope everyone has a happy New Year! 

Do you want to see all my yearly review posts from 2013-2015?
Then click here and just scroll it has all all 3 of them :-)


Comments

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...

LOTS, LOTS, LOTS to Tell!

Doing What I Can: People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that".... Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment ) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here ) & I'm keeping my Food Journal for him to look at. Here's how that is going: Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I...