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)..
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...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