Skip to main content

The Farm, Being Thankful, & Meds..

The Farm, Being Thankful, & Meds..
I love fridays! Tonight I'm going with my parents to my Uncles House, they are making dinner! I can't wait, I always have a spectacular time when I hang out with them! Then Saturday I'm going to the farm...

How weird...
I never have refered to my Grandparent's House as " Grandpa & Grandma's"; I have always just called it the farm. I think all the family has...since well forever.

At least it really is a farm.

My dad evens says "I'm going to the farm" (not mom & dad's). I wonder how many people think I'm going to an actual farm.

Got some GOOD NEWS!

My insurance company is paying for my new stomach formula! YAY! Here is something really ridiculous. The enzyme powder CFers have to use in the stomach formula to digest the feeding didn't make through the FDA protocal in time. Therefore, CFers (who some, like me, need the formula at night to gain weight) can not use it the higer density formulas anymore. However, the lower density/ easier ones to digest are products like "Ensure Plus, etc" so insurance say that they are "over the counter" and don't pay for them... Seriously.. 4 cans a nights... 7 dollars for 6 cans.. = $1.16 a can... so a weeks worth is $32 dollars.. a months = $130.  So not only will most CFers have to pay for this cost, but these products have around 400-500 calories less a night..making it harder to gain weight.

Why am I lucky to have insurance?
Because of my dad! He fought to keep me on it and has it set up now that I can keep it until 1. I get a full time job/benefits 2. I get Married. Which I still have 3 yrs of Grad School...So I will get to keep my dads insurance..which covers me 100%.

I hate knowing that the majority of CFers are not as lucky as me.

I have some friends who simply don't receive the better meds like Cayston or Tobi or Pulmozyme.. Here is the total of costs I would pay if I had no insurance (these are for one months supply)..
Formula=$130
     Ranit= $3.53
     Zith = $205.17
    Advair= $238.33
    Zenpep=$396.61
    Flo= $82.76
    Inhaler=$45.94
   Vitamin= $39
    Alb. Neb=$72.59
    Hyp. Ton=$69.94
Pulmozyme=$2,524.53
Tobi=$5,776.40
Cayston=$5,844.68
TOTAL:$15,429.48
And if I get Kayldeco( if I have the mutation for the med)
Kayldeco costs $24,500 -(it is well worth it)

for more info on Kayldeco check out www.cff.org
 This is all just food for thought. Think about the people who aren't receiving the meds they need, thanks to our insurances...
 

Labels:

Popular posts from this blog

Cystic Fibrosis Clinic Results. Not what I wanted, but...

My Results: I went down in lung function 2% points and lost  a couple more lbs. So I'm at 102. I was really disappointed with myself. I know that I have been doing  my meds and I have been doing my stomach feeding most nights too.  I have been making the right decisions and all my friends have been very supportive. I bring my nebulizers over to their houses to do them if we are hanging out, etc. It just wasn't enough this clinic. I really thought there would be a slight increase. However, I haven't been jogging since it is cold outside. And I know waitressing has been making it hard to gain weight. Plus, its winter. It is always harder for me to stay healthy in the winter. Dr. B was still pleased. He said "I should give myself a break, I have been doing everything he asked, I ran a 5K, and I'm still doing well." And that is true 2% increase isn't a huge decrease, only if I continue to decrease then there is a problem. Dr. B told me that I need to focus...
2 comments
Read more

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...
Read more

Craft Show and Work.

Craft Show This Saturday is the Craft Show! Mom and I will be selling our stuff there! It's at Liberty Village in Princeton from 11am-2pm! Please come and see all the booths! There will be 20 booths, kid's bouncy houses, games, prizes, raffles, etc. Proceeds from raffles, etc help give the residents of Liberty Village Christmas gifts and a Chirstmas Celebration! I'm excited to do this craft show, I remember going to them when I was younger! I loved it! Mom would take me along and I really enjoyed spending the day with her and looking at all the crafts! Mom is selling lots of hats, some purses, pouches, a couple blankets, teddy bears, etc. I will be doing my usual picture frames, notecards, etc. I will also be selling Michelle's My Bubble Products! To see some products: A Few of Mom's products -> Click Here!     Michelle's My Bubble products -> Click Here!      My mom said she is going to set aside a portion of her profits to ...
Post a Comment
Read more