Day 3 - Breathe Bravely Challenge

Finding beauty in every breath. 

Cystic Fibrosis is an ugly disease, but I strive to find the beauty in every breath I am given. This year I will spend roughly 850+ hours doing VEST treatments: 3-4 treatments every day at about 40 minutes per treatment. These treatments involve inhaling nebulized aerosols (4 medications) and my VEST (a vest that inflates with air and shakes at progressing high frequencies). Treatments help break up the mucus clogging my airways where bacteria and infection love to live.  As CF progresses, the higher the need becomes for more treatments during the day.

I spend 2 + hours every day doing treatments: fueling the deep hope that lives within every breath I take at the chance of more beautiful tomorrows. 

I am so thankful for every lifesaving treatment that has given me another day. Another day to love, to hope, to sing, to make memories, to laugh, and to breathe bravely: each is truly a gift. Love to all. 

Hope is a beautiful thing. 

Become a part of the Breathe Bravely 60 day challenge. 

Take a moment every day and capture the beauty that fills every breath.

1. Capture a beautiful moment every day for 60 days.

2. Each day share your picture with us: 

          Facebook - Ashley Ballou-Bonnema

          Instagram - breathe.bravely

          Twitter - @breathebravely

3. Add the hashtag #breathebravely60 to your post and tag Breathe Bravely in your photo! 

Priceless

How far would you be willing to go for a chance at one more breath?  To ensure you had one more chance at sharing laughter, tears, and making beautiful memories?  Would you spare no expense if it meant staying alive?

I am so truly privileged to have good health insurance and for the specialty CF programs that allow me to get the medications needed to fight CF and grant me every extra beautiful breath.  I am so grateful for my CF team that ensures I have the capability and access to what I need to fight CF: they spend countless hours dealing with my insurance company, enrolling me in or finding out information about specialty programs, and managing and adjusting my prescriptions.   But CF still comes at a high cost.  I am so very lucky to have Mark who never questions the financial burden of CF, but sees every therapy and treatment as another day together. 

By February 1st I have usually reached my insurance's deductible and out of pocket max from prescription drug costs and doctor visits.  Every January I know instead of booking a nice European vacation, I will be buying a chance at one more breath.  

The cost of 3O days to fight CF [prescription drug & therapy costs]

      Cayston.......................$6,786

      TOBI...........................$8,O12

      Pulmozyme..................$2,843

      HyperSal......................$62

      Prednisone....................$2O

      Amicar.........................$85O

      Voriconazole................$7,O15

      Mephyton.....................$349

      Pantoprazole.................$55

      Albuterol.......................$5O

      ProAir...........................$15O

      Azithromycin................$186

      Atenelol.........................$1O

      Cipro.............................$3O

      Bactrim..........................$15

      Enzymes........................$3,2OO

      Mucinex D.....................$4O

      Zantac............................$25

      Vitamin D......................$15

      CF Vitamin....................$15

      Dulera............................$25O

*This does not include the cost of IV therapy or hospital visits/ stays

Kalydeco, a new and promising therapy that corrects the underlying cause of CF costs $3O,OOO for a 3O day supply. [This medication is only effective on 4% of people with a certain CF mutation]  What would you be willing to pay to cure CF, to never worry about CF stealing another day?

 Cost of equipment and other therapies

      VEST.............................$15,OOO-$2O,OOO

      Nebulizer........................$15O

      Acupuncture...................$65/time

      Neilmed...........................$15

Travels costs for doctors appointments in Minneapolis & Sioux Falls per year.

      Hotel, Gas, Food............$2,OOO

This is my life, and I will do everything I can for one more beautiful breath.  I am so thankful for my CF team, Mark, and my family who have always done everything possible to ensure I have access to the best medical care and therapies: I owe every breath to you. The cost of living with CF? Roughly $3O,OOO a month for just prescriptions.  The chance at living? Priceless.  Love to you all.  

What are you willing to pay to live another day?

      

      

Rise & Shine

Listen.  Do you hear it? It's the sound of a beautiful new day beginning.

Everyone has their normal routine they live by, whether it be consciously set or not.  Think of your morning.  Do you drink coffee first and then shower? Or do you check your email, shower, eat breakfast?

Your routine doesn't stop there though! It continues on throughout your day until the fresh beginning of tomorrow morning's sunrise.

Have you thought through your daily routine? Now try adding this into your usual routine of work, school, and family: set your alarm for 45 minutes earlier, set aside 45 minutes in your late afternoon, and carve out 45 minutes before you go to bed.  How would that impact your day?

My day begins in my little black chair doing a VEST treatment and Nebs.  Most mornings I would love to stay in bed for that extra 45 minutes, but I know CF doesn't take a day off, so either can I.

What is the VEST?

The VEST is an airway clearance device that uses High-Frequency Chest Wall Oscillation [mini-coughs] to dislodge mucus from the bronchial walls in hopes that the mucus will be easier to clear.  Mucus settled deep in the airways is a breeding ground for infection, thus making the mobilization of mucus so important to maintaining the progression of CF.

Say What? I know, it's hard to explain.

Imagine wearing a life jacket that fills with air and shakes up to 25 times per second for 3O minutes straight.  One might think, "that would be a great time to read, write, or do homework." Sadly, I have not mastered the art of reading and writing while being shaken so vigorously.

Nebs

Inhaled nebs are another crucial part of my CF regimen.  Four different inhaled nebs accompany each VEST treatment, taking about 45 minutes for completion each time.

   -Bronchodilator: Opens up airways

   -2 types of Mucolytics: Thins mucus

   -Antibiotics: Fights CF bacteria and infection

A date with my little black chair.

Full days mean neb treatments in the car

As Cystic Fibrosis progresses so does the need for more treatments during the day.   Currently I do 3 treatments a day for a total of 2 + hours a day spent in my little black chair.   During times of exacerbation and infection, more VEST and neb treatments are necessary. As time rolls around for my next treatment, my lungs are usually craving a good shaking.  I am not going to lie, sometimes I feel like I am chained to that chair, but I know it's helping to keep me alive.

Today is going to be a very full, but beautiful day, so I must rise and shine!  Today is another day I get to breath.

What do you rise and shine for in the morning?