Can I Afford My Meds?

My Vitamins & Pills:

Well, I had my last Clinic on May 8th and it was pretty good (I even got some super amazing news from Doc)! Feel free to read all about it By scrolling below this post or just click here! As you can see I'm super excited, 15 years is a long time to have a stomach tube! It will be amazing after I get it out! However, the only negative thing I have come to find out is my Vitamin D is dropping again. I've had lots of issues with this in the past, at least this time my number is only 50% below what it should be. About a year ago it was practically non-existant. I've written 3 short blog entries before about my Vitamin D levels in the past: Check them all out by clicking here! And this is the poster I made to explain the CF problem that is "lack of vitamin D"

 I'm doing another 2 week "burst" (that's what doc calls it) of 50,000 units daily of Vitamin D! If you read my previous posts, you see that is an extremely high does for the average person. However, with CF I feel most meds have to be taken to another level to work efficiently. Hopefully, my Vitamin D will work its way back up to at least 50 at my next blood test. Thankfully, my Vitamin A, E, K are all working like they should. I started Vitamin A little over a year ago and added the rest recently. I also take a Calcium supplement to keep my "borderline" osteopenia from turning into full blown osteoperosis. I've also up-ed the amount of zenpep enzymes I take per meal. I do 6 with meals and 4 with snacks (from 4 & 3). 

Okay, so adding pills what does that mean besides remembering to take a handful more pills a day? Well, luckily, I have great insurance that covers all but little co-pays. I roughly pay $25 every 2 weeks for meds (at this point). I know we will end up adding more as time progresses and my CF gets worse. HOWEVER:  Here is the break down of how much they actually cost and why I would die without my insurance! 

ONE MONTH SUPPLY OF EACH MED COSTS:

Albuteral: $108.89

Hypertonic Saline: $61.94

Pulmozyme: $2,483.44

Cayston: $6,786.02

Tobi: $8,012.17

Advair Disc: $321.20

Albuteral Emergency Inhaler: $26.71

Zenpep Enzymes: $4,194.21

Flonase Spray: $102.19

Prevacid: $274.48 

Vitamin K: $370.25

Vitamin D: $7.50

Vitamin A: $0.60

Calcium: $1.28

Probiotic: $17.29

Prednisone: $3.64

Zithromax: $186.80

Loritadine: $2.98

Mediport Needle (for monthly stick/flush): $174

Saline Solution: $20

New Nebulizers: $36.17

Ensure: $56.88 (for drinking now)

So total after my stomach tube is out will be costs of meds per months will be : 

During TOBI months: $16,462.62

During CAYSTON months: $15,236.47

But what it was with Stomach tube being used (last 15 yrs):

Extra Ensure for Tube Feedings $170.64

Gauze: $12.25

Big Bandaids: $13.83

Connector pieces: $40

Med Tape: $6.00

Feeding Pump Rental: $478.50

So Add on $721.22 for Stomach Tube Usage

Are you wondering what I pay out of pocket, luckily my co-pays tend to be $2 - $4 

But lets see for fun: 

Albuteral: $3

Hypertonic Saline: $2.90

Pulmozyme: $3.90

Cayston: $8.00

Tobi: $0

Advair Disc: $2.00

Albuteral Emergency Inhaler: $0

Zenpep Enzymes: $2.90

Flonase Spray: $2.00

Prevacid: $0 

Vitamin K: $0

Vitamin D: $0

Vitamin A: $0.60

Calcium: $1.28

Probiotic: $17.29

Prednisone: $0

Zithromax: $2.00

Loritadine: $2.98

Mediport Needle(for monthly stick/flush): $0

Saline solution: $0

Extra Ensure for Tube Feedings $0

Gauze: $12.25

Big Bandaids: $13.83

Connector pieces: $0

Med Tape: $6.00

Feeding Pump Rental: $0

My total $80.93 out of pocket- whew... thank goodness for insurance!

While my insurance pays: 

During TOBI months: $16,462.62

During CAYSTON months: $15,236.47

I always find it interresting to break it down! As CF patients get older we tend to accumulate more meds, oxygen/ tanks, joint meds, antibiotics, and if we receive a transplant we add on lots of transplant meds/ rejection meds.  Lot of women with CF have to have fertility treatments to have a child, there is so much added over time that even sometimes I don't realize how much it is.

It really adds up!

Other costs to take into consideration: For example last year 1/3 of the year I was on antibiotics (oral), was in hospital for 5 weeks of the year. And went to clinic at least 9 times. I saw my doctor at least 15 times throughout the year with Clinic, getting sick, the clinical trial, etc. Add up Doc visits, hospital stays, the ambulance ride from Peru, IL to Chicago. I'm getting pretty happy with my insurance,because I didn't pay any of that! On average I get bloodwork done every 3 months. Plus, GI Doc, Surgeon appointments, the surgery in June 2013 I had probably cost a pretty penny too!

 I'm not blogging about this to complain, just to give myself a reality check on how lucky I am. And also open everyone's eye to the costs of CF. Let's just cure this stinkin disease, so we can limit the number of meds we need! :-) Sounds good huh! Well, thankfully research has gotten better!

Research may have added more meds to my regimen, but at least these new meds being researched help with our medical problems, resulting in us losing less lung function and weight. I've been pretty stable for a while. Like I said in the speech I gave in Champaign at the CF Walk (check it out below). I really wish you could feel what it is like to start a new therapy or medicine that really makes a difference in our ability to breathe. So thank you to everyone who has contributed by donating, volunteered, walked, or even helped spread awareness about CF! Everything helps us!  

For more info on Fundraisers I'm doing for CF (if you want to join or donate to one), feel free to click here for the full list & tips!   And if you want to directly just donate: either donate on line here: click here to donate to Princeton's Walk! or read about the easy snail mail fundraiser I'm doing By Clicking Right Here!