Extraordinary Expenses

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SaltyAndSweet

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

... but just wanted to point out: Unless you have allergies as well, there is no reason with CF not to own a dog (except maybe expense).
</end quote></div>

This is exactly my point, EXPENSES. Since more of our paychecks have to go to our disease, sometimes we can't afford a "normal" life.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SaltyAndSweet

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

... but just wanted to point out: Unless you have allergies as well, there is no reason with CF not to own a dog (except maybe expense).
</end quote></div>

This is exactly my point, EXPENSES. Since more of our paychecks have to go to our disease, sometimes we can't afford a "normal" life.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SaltyAndSweet

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

... but just wanted to point out: Unless you have allergies as well, there is no reason with CF not to own a dog (except maybe expense).
</end quote></div>

This is exactly my point, EXPENSES. Since more of our paychecks have to go to our disease, sometimes we can't afford a "normal" life.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SaltyAndSweet

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

... but just wanted to point out: Unless you have allergies as well, there is no reason with CF not to own a dog (except maybe expense).
</end quote>

This is exactly my point, EXPENSES. Since more of our paychecks have to go to our disease, sometimes we can't afford a "normal" life.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SaltyAndSweet

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
<br />
<br />... but just wanted to point out: Unless you have allergies as well, there is no reason with CF not to own a dog (except maybe expense).
<br /></end quote>
<br />
<br />This is exactly my point, EXPENSES. Since more of our paychecks have to go to our disease, sometimes we can't afford a "normal" life.
<br />
<br /><img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
 
B

beccasmom

New member
I also am a parent not an adult patient, but agree that there are a huge number of costs that other parents do not have.

Time off work is a big one, I am a single parent, so when my daughter is in the hospital we have no income at all. I also need to pay for child care for my other child when my child with CF is in the hospital or has clinic visits. Our clinic is 200+miles away, so gas, hotels, and parking are big expenses as well

Because none of the daycares in our area will give my daughter her enzymes--they consider this medically to fragile to be in daycare and she is also on oxygen we have to have a nanny so I can work, this costs $400/week more than daycare would. Also if I want to go out or have a meeting we have to hire a respite provider which is $40/hr instead of a regular sitter.

SInce my daughter is on Oxygen and is only 18 months old, she needs to have it taped to her face, but it is too hard on her skin, so we need to use Douderm which costs $50 a box and is not covered by insurance. A box lasts us 3 weeks.

We also have the same issues with meds, nebs, and copays as others have mentioned.

My daughters formula also not covered by insurance is $70 a can and a can lasts 3 days.

My ulcer medicine is $173/mo and is not covered by insurance. I never needed it before my daughter was diagnosed, so I think it is a Cf related cost as well.
 
B

beccasmom

New member
I also am a parent not an adult patient, but agree that there are a huge number of costs that other parents do not have.

Time off work is a big one, I am a single parent, so when my daughter is in the hospital we have no income at all. I also need to pay for child care for my other child when my child with CF is in the hospital or has clinic visits. Our clinic is 200+miles away, so gas, hotels, and parking are big expenses as well

Because none of the daycares in our area will give my daughter her enzymes--they consider this medically to fragile to be in daycare and she is also on oxygen we have to have a nanny so I can work, this costs $400/week more than daycare would. Also if I want to go out or have a meeting we have to hire a respite provider which is $40/hr instead of a regular sitter.

SInce my daughter is on Oxygen and is only 18 months old, she needs to have it taped to her face, but it is too hard on her skin, so we need to use Douderm which costs $50 a box and is not covered by insurance. A box lasts us 3 weeks.

We also have the same issues with meds, nebs, and copays as others have mentioned.

My daughters formula also not covered by insurance is $70 a can and a can lasts 3 days.

My ulcer medicine is $173/mo and is not covered by insurance. I never needed it before my daughter was diagnosed, so I think it is a Cf related cost as well.
 
B

beccasmom

New member
I also am a parent not an adult patient, but agree that there are a huge number of costs that other parents do not have.

Time off work is a big one, I am a single parent, so when my daughter is in the hospital we have no income at all. I also need to pay for child care for my other child when my child with CF is in the hospital or has clinic visits. Our clinic is 200+miles away, so gas, hotels, and parking are big expenses as well

Because none of the daycares in our area will give my daughter her enzymes--they consider this medically to fragile to be in daycare and she is also on oxygen we have to have a nanny so I can work, this costs $400/week more than daycare would. Also if I want to go out or have a meeting we have to hire a respite provider which is $40/hr instead of a regular sitter.

SInce my daughter is on Oxygen and is only 18 months old, she needs to have it taped to her face, but it is too hard on her skin, so we need to use Douderm which costs $50 a box and is not covered by insurance. A box lasts us 3 weeks.

We also have the same issues with meds, nebs, and copays as others have mentioned.

My daughters formula also not covered by insurance is $70 a can and a can lasts 3 days.

My ulcer medicine is $173/mo and is not covered by insurance. I never needed it before my daughter was diagnosed, so I think it is a Cf related cost as well.
 
B

beccasmom

New member
I also am a parent not an adult patient, but agree that there are a huge number of costs that other parents do not have.

Time off work is a big one, I am a single parent, so when my daughter is in the hospital we have no income at all. I also need to pay for child care for my other child when my child with CF is in the hospital or has clinic visits. Our clinic is 200+miles away, so gas, hotels, and parking are big expenses as well

Because none of the daycares in our area will give my daughter her enzymes--they consider this medically to fragile to be in daycare and she is also on oxygen we have to have a nanny so I can work, this costs $400/week more than daycare would. Also if I want to go out or have a meeting we have to hire a respite provider which is $40/hr instead of a regular sitter.

SInce my daughter is on Oxygen and is only 18 months old, she needs to have it taped to her face, but it is too hard on her skin, so we need to use Douderm which costs $50 a box and is not covered by insurance. A box lasts us 3 weeks.

We also have the same issues with meds, nebs, and copays as others have mentioned.

My daughters formula also not covered by insurance is $70 a can and a can lasts 3 days.

My ulcer medicine is $173/mo and is not covered by insurance. I never needed it before my daughter was diagnosed, so I think it is a Cf related cost as well.
 
B

beccasmom

New member
I also am a parent not an adult patient, but agree that there are a huge number of costs that other parents do not have.
<br />
<br />Time off work is a big one, I am a single parent, so when my daughter is in the hospital we have no income at all. I also need to pay for child care for my other child when my child with CF is in the hospital or has clinic visits. Our clinic is 200+miles away, so gas, hotels, and parking are big expenses as well
<br />
<br />Because none of the daycares in our area will give my daughter her enzymes--they consider this medically to fragile to be in daycare and she is also on oxygen we have to have a nanny so I can work, this costs $400/week more than daycare would. Also if I want to go out or have a meeting we have to hire a respite provider which is $40/hr instead of a regular sitter.
<br />
<br />SInce my daughter is on Oxygen and is only 18 months old, she needs to have it taped to her face, but it is too hard on her skin, so we need to use Douderm which costs $50 a box and is not covered by insurance. A box lasts us 3 weeks.
<br />
<br />We also have the same issues with meds, nebs, and copays as others have mentioned.
<br />
<br />My daughters formula also not covered by insurance is $70 a can and a can lasts 3 days.
<br />
<br />My ulcer medicine is $173/mo and is not covered by insurance. I never needed it before my daughter was diagnosed, so I think it is a Cf related cost as well.
 
B

blondelawyer

New member
College might cost more if you have to extend the time you are there because of missing classes or taking fewer classes, etc. Also, my husband had to pay more for a private room in the dorm. We have also paid extra costs at the hospital for private rooms. For the most part we are really lucky with our insurance so I shouldn't complain about that.

The only other thing that I can think of that hasn't been listed (at least I think that it hasn't), is that we always have to buy traveler's insurance when booking vacations in case he gets sick and we can't go, etc.

Really, one of the biggest "expenses" in my book is the TIME. I spend SO much time doing CF related stuff and I am just the wife!
 
B

blondelawyer

New member
College might cost more if you have to extend the time you are there because of missing classes or taking fewer classes, etc. Also, my husband had to pay more for a private room in the dorm. We have also paid extra costs at the hospital for private rooms. For the most part we are really lucky with our insurance so I shouldn't complain about that.

The only other thing that I can think of that hasn't been listed (at least I think that it hasn't), is that we always have to buy traveler's insurance when booking vacations in case he gets sick and we can't go, etc.

Really, one of the biggest "expenses" in my book is the TIME. I spend SO much time doing CF related stuff and I am just the wife!
 
B

blondelawyer

New member
College might cost more if you have to extend the time you are there because of missing classes or taking fewer classes, etc. Also, my husband had to pay more for a private room in the dorm. We have also paid extra costs at the hospital for private rooms. For the most part we are really lucky with our insurance so I shouldn't complain about that.

The only other thing that I can think of that hasn't been listed (at least I think that it hasn't), is that we always have to buy traveler's insurance when booking vacations in case he gets sick and we can't go, etc.

Really, one of the biggest "expenses" in my book is the TIME. I spend SO much time doing CF related stuff and I am just the wife!
 
B

blondelawyer

New member
College might cost more if you have to extend the time you are there because of missing classes or taking fewer classes, etc. Also, my husband had to pay more for a private room in the dorm. We have also paid extra costs at the hospital for private rooms. For the most part we are really lucky with our insurance so I shouldn't complain about that.

The only other thing that I can think of that hasn't been listed (at least I think that it hasn't), is that we always have to buy traveler's insurance when booking vacations in case he gets sick and we can't go, etc.

Really, one of the biggest "expenses" in my book is the TIME. I spend SO much time doing CF related stuff and I am just the wife!
 
B

blondelawyer

New member
College might cost more if you have to extend the time you are there because of missing classes or taking fewer classes, etc. Also, my husband had to pay more for a private room in the dorm. We have also paid extra costs at the hospital for private rooms. For the most part we are really lucky with our insurance so I shouldn't complain about that.
<br />
<br />The only other thing that I can think of that hasn't been listed (at least I think that it hasn't), is that we always have to buy traveler's insurance when booking vacations in case he gets sick and we can't go, etc.
<br />
<br />Really, one of the biggest "expenses" in my book is the TIME. I spend SO much time doing CF related stuff and I am just the wife!
 
L

lightNlife

New member
Parking lot fees at doctor's offices

Hearing aids for those of us poisoned by Tobra (you'll have a hard time finding any insurance company to pay for them!)

Clothing/accessories expenses
-replacing underwear that's been ruined by orange booty oil
-larger, loose fitting clothing for when you're on Prednisone
-long sleeves to cover PICC lines
-purses big enough to hold IV meds

Air purifiers/filters

Small fridge for keeping IV meds

Toothbrushes (should be replaced after EVERY infection or illness)
 
L

lightNlife

New member
Parking lot fees at doctor's offices

Hearing aids for those of us poisoned by Tobra (you'll have a hard time finding any insurance company to pay for them!)

Clothing/accessories expenses
-replacing underwear that's been ruined by orange booty oil
-larger, loose fitting clothing for when you're on Prednisone
-long sleeves to cover PICC lines
-purses big enough to hold IV meds

Air purifiers/filters

Small fridge for keeping IV meds

Toothbrushes (should be replaced after EVERY infection or illness)
 
L

lightNlife

New member
Parking lot fees at doctor's offices

Hearing aids for those of us poisoned by Tobra (you'll have a hard time finding any insurance company to pay for them!)

Clothing/accessories expenses
-replacing underwear that's been ruined by orange booty oil
-larger, loose fitting clothing for when you're on Prednisone
-long sleeves to cover PICC lines
-purses big enough to hold IV meds

Air purifiers/filters

Small fridge for keeping IV meds

Toothbrushes (should be replaced after EVERY infection or illness)
 
L

lightNlife

New member
Parking lot fees at doctor's offices

Hearing aids for those of us poisoned by Tobra (you'll have a hard time finding any insurance company to pay for them!)

Clothing/accessories expenses
-replacing underwear that's been ruined by orange booty oil
-larger, loose fitting clothing for when you're on Prednisone
-long sleeves to cover PICC lines
-purses big enough to hold IV meds

Air purifiers/filters

Small fridge for keeping IV meds

Toothbrushes (should be replaced after EVERY infection or illness)
 
L

lightNlife

New member
Parking lot fees at doctor's offices
<br />
<br />Hearing aids for those of us poisoned by Tobra (you'll have a hard time finding any insurance company to pay for them!)
<br />
<br />Clothing/accessories expenses
<br />-replacing underwear that's been ruined by orange booty oil
<br />-larger, loose fitting clothing for when you're on Prednisone
<br />-long sleeves to cover PICC lines
<br />-purses big enough to hold IV meds
<br />
<br />Air purifiers/filters
<br />
<br />Small fridge for keeping IV meds
<br />
<br />Toothbrushes (should be replaced after EVERY infection or illness)
<br />
<br />
<br />
<br />
 
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