Tuesday, January 10, 2017

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me.

So this last weekend I took my vest machine, wabi sterilizer system, and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL

 


On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least).

I knew I was feeling a bit better than before, but wasn't sure what to expect. My CF Care team is really on top of things & the new director (doctor KH) is very proactive. He decided since my health went down so much we would do a full work up: Full PFT (in the box), CT, Xray, blood, Urine, Sputum, and check for everything. He then set up a time to meet me (with the CF team all together) in a conference room to go over my total health. He showed me all the numbers, scans, and results on the big screen & then explained everything to me. This was helpful for me to get an overall picture (and very helpful to Andrew, who is still new at understanding all the numbers).

So...Are you ready... My liver is more normal-ish, my cell count is normal-ish, no weird sputum cultures, just two strains of psuedo. Weight is up to 106.5 & my lung function.... is up from 38% to 50%

FIFTY, hot diggity dog! I went up 12% and while that isn't quite my baseline of 55-58, it is a big jump in the right track.

What does this mean for me (& Andrew)? Well, doc wants me to keep doing everything I am doing, plus make sure to add 20 mins of cardio type exercise post therapies to really get my lungs going!

I think I'm going to buy a membership to the local gym (it's not a big fancy gym with a track), but I want to use the gym more for lifting weights, then do workouts & treadmill at home! I have done a lot of my work from home, so I can focus on eating & meds more!  I will just keep at it. My next appointment is Feb 28th!

Also, make sure to check out the lastest Blog post I wrote for the National Cystic Fibrosis Foundation Website, it is about Advocating for yourself.


Wednesday, January 4, 2017

Just. Stay. Motivated.

I don't really like to make New Year resolutions. My resolutions were always something really important like being 100% compliant with nebulizers. That's a lot of pressure when you do 10 nebulizers, 3 airway clearances and take over 50+ pills a day. If I go out of town and forget my pulmozyme, It ruins my prefect streak. While they are simple mistakes, once I mess up, I have lost that competitive streak I had and it's hard to stay on track.

So I decided this year just to examine where I am at now and take it a day at a time.

My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (worst)... where I am now (38%) is terrifying.  Here is a chart to explain my lung function battle & how fast I can drop due to getting ill...



My lung function is currently sitting at 38% again, so I'm headed downward really fast. So whether that includes more IVs, hospital stays, taking me off Orkambi, I don't care. I want it back to 55% and hopefully work my way up to 60% from there. I feel like I have been struggling for over year. Up and Down.  In 2012 at the beginning of the chart I was in the 30s and did go up to 55% after a full year of working out, jogging every night, and really pushing myself to the limit. However, back then it was a gradual decrease, not a sudden cliff dive like this time. Which is why  my doctor was concerned with some of my CT scans. So I just have to keep at it and I have been preparing for my appointment & lung function test on Tuesday of next week. I will keep you all updated.

I'm starting to doubt and let the negative creep in. I need higher lung function to carry groceries and  complete daily living, but mostly I want to be a mother. I worry I won't be able to carry my child around if I'm stuck at the level of lung function I am at now. I can't do laundry or any yard work. I can't leave the house in the winter. With Andrew working two jobs (80 hours a week) I can't expect him to take on being "bascially" a single parent on top of everything. So I need to get my health prioritized NOW!

 Andrew & I have been looking into more options to become a family and that is reason enough to stay focused!

We don't want to wait years to start a family. We have been talking about since before we were even engaged how we wanted kids & how quickly we were planning on becoming a family. I'm 32 years old and in CF years.. That means I feel 52 with my arthritis & decreased lung function... some days even older...So it's a lot of stress and information to process right now. We have been hitting more obstacles and its costing more money to jump through the hoops to become parents. It has been tough to say the least. So Andrew has been dealing with the agencies, while I focus on my health. We will give you an update in the next few weeks about our Family Planning Journey.

I fully believe I can get back to 60% lung function and can remain stable there (like I did for so many years). BUT, I do believe it will take time and will be like a full-time job.

I think getting active is my best chance. It's just hard to be motivated when I'm home 14+ hours a day by myself and over an hour away from my family and friends. I really need a walking buddy or something.

This week has been a struggle. Along with hitting more walls in becoming a family this week, and not seeing my health increase, this week my Grandma Kunkel passed away too. I'm traveling
back to my hometown for the weekend for the visitation & funeral. So I'm just doing everything one day at a time. Or my head will explode.

This year will be as much of a struggle as last year I have a feeling. BUT, like last year I really believe some beautiful things will happen to make it all worth it. Last year, we bought a home I absolutely LOVE! We also celebrated a year of marriage, went on a short vacation with my friend, Ryan. And Andrew and I decided to start planning for a family!

Hopefully 2017 brings equally beautiful things into our life to over shadow the negatives and I can just get back on track and healthy.

Just. Stay. Motivated.




Thursday, December 29, 2016

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 :-)