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?

      

      

All You Can Eat

"Please slide your shoes off and step over here."

No, we are not going through the security checkpoint at the airport.  We are in the doctors office getting ready to step on the scale.  

As I step on the scale I hold my breath, hoping that the number is at least the same as last time if not higher.  I know what you're thinking, "she's crazy." 

While the last comment is debatable, the constant battle to gain weight is endless. Cystic Fibrosis causes thick mucus to block the ducts of the pancreas, preventing digestive enzymes to assist in digestion.  What does this mean? It means my body can't process or absorb nutrients properly, especially fats. 

Pancreatic Enzymes

Number of Enzymes I take in a day.

Thank God for these little pills that work to digest my food: I would be so miserable without them.  Enzymes need to be taken anytime I eat.  

Diet

Because the most basic of daily tasks such as breathing take more energy, and because nutrients are not well absorbed, a high calorie diet is an essential part of life for someone with CF. Or as I like to call it, the "All You Can Eat" diet.   A higher body weight is linked to better lung function, and the ability to fight infection. The signs of a lung infection are decreased appetite and weight loss.


Buffet Anyone?
You're thinking, "that sounds awesome. All you can eat? Sign me up."  Sadly, it's not that simple.  At times the last thing I want to do is eat.  Why? Because having a full stomach makes breathing difficult: it pushes against the lungs limiting the amount of room the lungs have to expand for inhalation. Also, because of the complications with the digestive system and because of chronic coughing, CF causes severe acid reflux.  Affected Breathing? Acid reflux? Digestive complications? Bring it on. I'll take fries with that, please. Wait, make that cheese balls [they're higher in calorie content].


I am constantly aware of how I can simply add a few calories here and there, knowing I have to keep eating to stay as healthy as possible.  In the last year and half I have lost about 15 lbs.  I have gained just a couple pounds back, but it is a constant battle between losing and gaining.  In the world of CF a single pound in either direction can mean a lot.  


Those extra pounds you wish you could rid yourself of when you look in the mirror? Embrace them and be thankful for every one of them. They're beautiful.  Love to you all. 


Treat yourself today.  

Want to order those cheese balls? Do it and eat one for me.