Extraordinary Expenses

M

Mommafirst

Guest
All really good things so far. Here's some additional ones I thought of....

At the hospital everything is pretty much covered for my dd, but there is the extra expenses of meals for those of us at the hospital with her 24/7.

Long trips to the clinic require purell (that is a big expense after awhile), snack foods, extra stashes of enzymes, pill boxes for those enzymes.

CF kids most definitely use more diapers than other kids. And more baby wipes.

Pediasure (or any of the high cal shakes) are a financial killer. We got a script for ours but still can't get it covered. We buy generic and it still costs us about $150 a month in pediasure.

Another big cost for us, and I don't know if this is important to your list -- but we ask so much of our friends and family to donate to the Great STrides, that when it comes closer we try to do things to keep everyone motivated. We had T-shirts made -- $400; we threw a party -- $700; we donated ourselves, .... you get the point. Its important to us, but its definitely additional expenses we wouldn't have incurred if it were not for CF.
 
M

Mommafirst

Guest
All really good things so far. Here's some additional ones I thought of....

At the hospital everything is pretty much covered for my dd, but there is the extra expenses of meals for those of us at the hospital with her 24/7.

Long trips to the clinic require purell (that is a big expense after awhile), snack foods, extra stashes of enzymes, pill boxes for those enzymes.

CF kids most definitely use more diapers than other kids. And more baby wipes.

Pediasure (or any of the high cal shakes) are a financial killer. We got a script for ours but still can't get it covered. We buy generic and it still costs us about $150 a month in pediasure.

Another big cost for us, and I don't know if this is important to your list -- but we ask so much of our friends and family to donate to the Great STrides, that when it comes closer we try to do things to keep everyone motivated. We had T-shirts made -- $400; we threw a party -- $700; we donated ourselves, .... you get the point. Its important to us, but its definitely additional expenses we wouldn't have incurred if it were not for CF.
 
M

Mommafirst

Guest
All really good things so far. Here's some additional ones I thought of....

At the hospital everything is pretty much covered for my dd, but there is the extra expenses of meals for those of us at the hospital with her 24/7.

Long trips to the clinic require purell (that is a big expense after awhile), snack foods, extra stashes of enzymes, pill boxes for those enzymes.

CF kids most definitely use more diapers than other kids. And more baby wipes.

Pediasure (or any of the high cal shakes) are a financial killer. We got a script for ours but still can't get it covered. We buy generic and it still costs us about $150 a month in pediasure.

Another big cost for us, and I don't know if this is important to your list -- but we ask so much of our friends and family to donate to the Great STrides, that when it comes closer we try to do things to keep everyone motivated. We had T-shirts made -- $400; we threw a party -- $700; we donated ourselves, .... you get the point. Its important to us, but its definitely additional expenses we wouldn't have incurred if it were not for CF.
 
M

Mommafirst

Guest
All really good things so far. Here's some additional ones I thought of....

At the hospital everything is pretty much covered for my dd, but there is the extra expenses of meals for those of us at the hospital with her 24/7.

Long trips to the clinic require purell (that is a big expense after awhile), snack foods, extra stashes of enzymes, pill boxes for those enzymes.

CF kids most definitely use more diapers than other kids. And more baby wipes.

Pediasure (or any of the high cal shakes) are a financial killer. We got a script for ours but still can't get it covered. We buy generic and it still costs us about $150 a month in pediasure.

Another big cost for us, and I don't know if this is important to your list -- but we ask so much of our friends and family to donate to the Great STrides, that when it comes closer we try to do things to keep everyone motivated. We had T-shirts made -- $400; we threw a party -- $700; we donated ourselves, .... you get the point. Its important to us, but its definitely additional expenses we wouldn't have incurred if it were not for CF.
 
M

Mommafirst

Guest
All really good things so far. Here's some additional ones I thought of....
<br />
<br />At the hospital everything is pretty much covered for my dd, but there is the extra expenses of meals for those of us at the hospital with her 24/7.
<br />
<br />Long trips to the clinic require purell (that is a big expense after awhile), snack foods, extra stashes of enzymes, pill boxes for those enzymes.
<br />
<br />CF kids most definitely use more diapers than other kids. And more baby wipes.
<br />
<br />Pediasure (or any of the high cal shakes) are a financial killer. We got a script for ours but still can't get it covered. We buy generic and it still costs us about $150 a month in pediasure.
<br />
<br />Another big cost for us, and I don't know if this is important to your list -- but we ask so much of our friends and family to donate to the Great STrides, that when it comes closer we try to do things to keep everyone motivated. We had T-shirts made -- $400; we threw a party -- $700; we donated ourselves, .... you get the point. Its important to us, but its definitely additional expenses we wouldn't have incurred if it were not for CF.
<br />
<br />
 
T

tara

New member
These lists are great so far. Just a couple things to add for now.

CF babies use more diapers than a baby without CF, well guess what, CF adults use more toilet paper than a non-CF adult. (or at least...I do!) I also buy generic toilet paper and use that to spit sputum into (I can't stand to spit into cups, but some other CFers use dixie cups)

As a CFer I have less body fat and in the winter that means higher heating bills.

Some of my bills (hospital bills, mail in pharmacy bills) come the old fashion way, in the mail! So I have the added cost of stamps to mail the payment. It's not a huge deal, but it's a cost.
 
T

tara

New member
These lists are great so far. Just a couple things to add for now.

CF babies use more diapers than a baby without CF, well guess what, CF adults use more toilet paper than a non-CF adult. (or at least...I do!) I also buy generic toilet paper and use that to spit sputum into (I can't stand to spit into cups, but some other CFers use dixie cups)

As a CFer I have less body fat and in the winter that means higher heating bills.

Some of my bills (hospital bills, mail in pharmacy bills) come the old fashion way, in the mail! So I have the added cost of stamps to mail the payment. It's not a huge deal, but it's a cost.
 
T

tara

New member
These lists are great so far. Just a couple things to add for now.

CF babies use more diapers than a baby without CF, well guess what, CF adults use more toilet paper than a non-CF adult. (or at least...I do!) I also buy generic toilet paper and use that to spit sputum into (I can't stand to spit into cups, but some other CFers use dixie cups)

As a CFer I have less body fat and in the winter that means higher heating bills.

Some of my bills (hospital bills, mail in pharmacy bills) come the old fashion way, in the mail! So I have the added cost of stamps to mail the payment. It's not a huge deal, but it's a cost.
 
T

tara

New member
These lists are great so far. Just a couple things to add for now.

CF babies use more diapers than a baby without CF, well guess what, CF adults use more toilet paper than a non-CF adult. (or at least...I do!) I also buy generic toilet paper and use that to spit sputum into (I can't stand to spit into cups, but some other CFers use dixie cups)

As a CFer I have less body fat and in the winter that means higher heating bills.

Some of my bills (hospital bills, mail in pharmacy bills) come the old fashion way, in the mail! So I have the added cost of stamps to mail the payment. It's not a huge deal, but it's a cost.
 
T

tara

New member
These lists are great so far. Just a couple things to add for now.
<br />
<br />CF babies use more diapers than a baby without CF, well guess what, CF adults use more toilet paper than a non-CF adult. (or at least...I do!) I also buy generic toilet paper and use that to spit sputum into (I can't stand to spit into cups, but some other CFers use dixie cups)
<br />
<br />As a CFer I have less body fat and in the winter that means higher heating bills.
<br />
<br />Some of my bills (hospital bills, mail in pharmacy bills) come the old fashion way, in the mail! So I have the added cost of stamps to mail the payment. It's not a huge deal, but it's a cost.
 
M

marcijo

Guest
Here's mine:

*Advair $89 a month (After insurance)
*Pulmozyme $70 for 3 months (but was $350 a MONTH last year because my health insurance (regence/blue shield) decided to take it off of their formulary!)
*Saline 7% premixed $50 a month
*Vest-had to pay $2000 out of pocket after insurance covered the rest
*My annual deductible is $1000 - I always meet it
*Copays are $30 each time-I have a lot of them
*My insurance is an 80/20 plan so I pay 20% of services-which quickly adds up

That's all I can think of for now....for me its mainly the medical costs! And I have never even been hospitalized for IV's! At least not yet!
 
M

marcijo

Guest
Here's mine:

*Advair $89 a month (After insurance)
*Pulmozyme $70 for 3 months (but was $350 a MONTH last year because my health insurance (regence/blue shield) decided to take it off of their formulary!)
*Saline 7% premixed $50 a month
*Vest-had to pay $2000 out of pocket after insurance covered the rest
*My annual deductible is $1000 - I always meet it
*Copays are $30 each time-I have a lot of them
*My insurance is an 80/20 plan so I pay 20% of services-which quickly adds up

That's all I can think of for now....for me its mainly the medical costs! And I have never even been hospitalized for IV's! At least not yet!
 
M

marcijo

Guest
Here's mine:

*Advair $89 a month (After insurance)
*Pulmozyme $70 for 3 months (but was $350 a MONTH last year because my health insurance (regence/blue shield) decided to take it off of their formulary!)
*Saline 7% premixed $50 a month
*Vest-had to pay $2000 out of pocket after insurance covered the rest
*My annual deductible is $1000 - I always meet it
*Copays are $30 each time-I have a lot of them
*My insurance is an 80/20 plan so I pay 20% of services-which quickly adds up

That's all I can think of for now....for me its mainly the medical costs! And I have never even been hospitalized for IV's! At least not yet!
 
M

marcijo

Guest
Here's mine:

*Advair $89 a month (After insurance)
*Pulmozyme $70 for 3 months (but was $350 a MONTH last year because my health insurance (regence/blue shield) decided to take it off of their formulary!)
*Saline 7% premixed $50 a month
*Vest-had to pay $2000 out of pocket after insurance covered the rest
*My annual deductible is $1000 - I always meet it
*Copays are $30 each time-I have a lot of them
*My insurance is an 80/20 plan so I pay 20% of services-which quickly adds up

That's all I can think of for now....for me its mainly the medical costs! And I have never even been hospitalized for IV's! At least not yet!
 
M

marcijo

Guest
Here's mine:
<br />
<br />*Advair $89 a month (After insurance)
<br />*Pulmozyme $70 for 3 months (but was $350 a MONTH last year because my health insurance (regence/blue shield) decided to take it off of their formulary!)
<br />*Saline 7% premixed $50 a month
<br />*Vest-had to pay $2000 out of pocket after insurance covered the rest
<br />*My annual deductible is $1000 - I always meet it
<br />*Copays are $30 each time-I have a lot of them
<br />*My insurance is an 80/20 plan so I pay 20% of services-which quickly adds up
<br />
<br />That's all I can think of for now....for me its mainly the medical costs! And I have never even been hospitalized for IV's! At least not yet!
 
C

cdale613

New member
Can we count expensive racing bicycles?? My wife would be less upset with my winter project bike....

In all seriousness, I do think it would be fair to count gym memberships, and some equipment costs...

Chris

27 m w/cf
 
C

cdale613

New member
Can we count expensive racing bicycles?? My wife would be less upset with my winter project bike....

In all seriousness, I do think it would be fair to count gym memberships, and some equipment costs...

Chris

27 m w/cf
 
C

cdale613

New member
Can we count expensive racing bicycles?? My wife would be less upset with my winter project bike....

In all seriousness, I do think it would be fair to count gym memberships, and some equipment costs...

Chris

27 m w/cf
 
C

cdale613

New member
Can we count expensive racing bicycles?? My wife would be less upset with my winter project bike....

In all seriousness, I do think it would be fair to count gym memberships, and some equipment costs...

Chris

27 m w/cf
 
C

cdale613

New member
Can we count expensive racing bicycles?? My wife would be less upset with my winter project bike....
<br />
<br />In all seriousness, I do think it would be fair to count gym memberships, and some equipment costs...
<br />
<br />Chris
<br />
<br />27 m w/cf
 
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