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Costs dealing with cystis fibrosis
- Thread starter anonymous
- Start date
As for finances, it's different for everyone. My son is covered by our insurance (tricare prime) and we don't pay for anything. However, I have left my job to stay home with our son who has CF, so in a way we have been affected financially, but not in the way you mentioned.
Your next question is very ambiguous, maybe ask something more specific. And remember, everyone on here is an individual who experiences things differently, while one family may be doing great and handling things well, another may be having difficulty coping.
It may be very difficult to write a paper about how people feel about having a disease, you will never be able to give an answer to that which would cover everyone. For instance you can't say, " People that have Cystic Fibrosis are depressed, or people who have Cystic Fibrosis normally do very well and have happy normal lives that are just sometimes cut short" you can't group people because they share a disease in common, no more than you can group women as being or feeling the same just because we are all women, we still handle things differently.
Your next question is very ambiguous, maybe ask something more specific. And remember, everyone on here is an individual who experiences things differently, while one family may be doing great and handling things well, another may be having difficulty coping.
It may be very difficult to write a paper about how people feel about having a disease, you will never be able to give an answer to that which would cover everyone. For instance you can't say, " People that have Cystic Fibrosis are depressed, or people who have Cystic Fibrosis normally do very well and have happy normal lives that are just sometimes cut short" you can't group people because they share a disease in common, no more than you can group women as being or feeling the same just because we are all women, we still handle things differently.
As for finances, it's different for everyone. My son is covered by our insurance (tricare prime) and we don't pay for anything. However, I have left my job to stay home with our son who has CF, so in a way we have been affected financially, but not in the way you mentioned.
Your next question is very ambiguous, maybe ask something more specific. And remember, everyone on here is an individual who experiences things differently, while one family may be doing great and handling things well, another may be having difficulty coping.
It may be very difficult to write a paper about how people feel about having a disease, you will never be able to give an answer to that which would cover everyone. For instance you can't say, " People that have Cystic Fibrosis are depressed, or people who have Cystic Fibrosis normally do very well and have happy normal lives that are just sometimes cut short" you can't group people because they share a disease in common, no more than you can group women as being or feeling the same just because we are all women, we still handle things differently.
Your next question is very ambiguous, maybe ask something more specific. And remember, everyone on here is an individual who experiences things differently, while one family may be doing great and handling things well, another may be having difficulty coping.
It may be very difficult to write a paper about how people feel about having a disease, you will never be able to give an answer to that which would cover everyone. For instance you can't say, " People that have Cystic Fibrosis are depressed, or people who have Cystic Fibrosis normally do very well and have happy normal lives that are just sometimes cut short" you can't group people because they share a disease in common, no more than you can group women as being or feeling the same just because we are all women, we still handle things differently.
one problem with insurance companies (mainly pharmcy side) is they don't understand the disease and don't have the "prevention is the treatment" mind set. I've had to pay out of pocket expense to get the medicine I need for my daughter because it isn't on the formulary. Also, insurances typically want you to try over-the-counter stuff (for things like allegry related medicines) before paying for a script. Very frustrating.
There's a lot of other things to. Like the previous writer, often times you have to stay at home with your child. Last year we couldn't afford the RSV vaccine and choose to keep my daughter on home isolation instead. Also, CF clinics aren't always local. I have to drive 1 1/2 hours to ours. Really is a problem during hosipital stays.
There's a lot of other things to. Like the previous writer, often times you have to stay at home with your child. Last year we couldn't afford the RSV vaccine and choose to keep my daughter on home isolation instead. Also, CF clinics aren't always local. I have to drive 1 1/2 hours to ours. Really is a problem during hosipital stays.
one problem with insurance companies (mainly pharmcy side) is they don't understand the disease and don't have the "prevention is the treatment" mind set. I've had to pay out of pocket expense to get the medicine I need for my daughter because it isn't on the formulary. Also, insurances typically want you to try over-the-counter stuff (for things like allegry related medicines) before paying for a script. Very frustrating.
There's a lot of other things to. Like the previous writer, often times you have to stay at home with your child. Last year we couldn't afford the RSV vaccine and choose to keep my daughter on home isolation instead. Also, CF clinics aren't always local. I have to drive 1 1/2 hours to ours. Really is a problem during hosipital stays.
There's a lot of other things to. Like the previous writer, often times you have to stay at home with your child. Last year we couldn't afford the RSV vaccine and choose to keep my daughter on home isolation instead. Also, CF clinics aren't always local. I have to drive 1 1/2 hours to ours. Really is a problem during hosipital stays.
hello ..well the cost for us is all covered by insurance.but we are lucky to carries 2 on the whole family to make sure that it is all covered..
the one thing that gets very costly is the hospital stays..we just got home from the hospital of being there 3 days between driving everyday over a 2 hr drive we went throu.$100.in gas cost...then you have food cost for the family on top of that..
and the other question on emotions well i have to say that does vary between familys..if you ask my 11yr with cf he would say that it really sucks,, we had a interview with a intern.and she had a very loaded question for me ..she wanted to know if I had know about it when I was pregnat If I would of had a baby with cf..the answer was no..I would never bring another child in to this world with cf knowin what we do now..
the one thing that gets very costly is the hospital stays..we just got home from the hospital of being there 3 days between driving everyday over a 2 hr drive we went throu.$100.in gas cost...then you have food cost for the family on top of that..
and the other question on emotions well i have to say that does vary between familys..if you ask my 11yr with cf he would say that it really sucks,, we had a interview with a intern.and she had a very loaded question for me ..she wanted to know if I had know about it when I was pregnat If I would of had a baby with cf..the answer was no..I would never bring another child in to this world with cf knowin what we do now..
hello ..well the cost for us is all covered by insurance.but we are lucky to carries 2 on the whole family to make sure that it is all covered..
the one thing that gets very costly is the hospital stays..we just got home from the hospital of being there 3 days between driving everyday over a 2 hr drive we went throu.$100.in gas cost...then you have food cost for the family on top of that..
and the other question on emotions well i have to say that does vary between familys..if you ask my 11yr with cf he would say that it really sucks,, we had a interview with a intern.and she had a very loaded question for me ..she wanted to know if I had know about it when I was pregnat If I would of had a baby with cf..the answer was no..I would never bring another child in to this world with cf knowin what we do now..
the one thing that gets very costly is the hospital stays..we just got home from the hospital of being there 3 days between driving everyday over a 2 hr drive we went throu.$100.in gas cost...then you have food cost for the family on top of that..
and the other question on emotions well i have to say that does vary between familys..if you ask my 11yr with cf he would say that it really sucks,, we had a interview with a intern.and she had a very loaded question for me ..she wanted to know if I had know about it when I was pregnat If I would of had a baby with cf..the answer was no..I would never bring another child in to this world with cf knowin what we do now..
It is a constant battle with our sons CF, not with just the disease, but with the insurance companies and bills coming in. His prescriptions last year were over $33,000.00 and that is not counting hospital stays and IV med's, home IV, surgeries, cf visits, etc. Luckily right now most of his med's, etc., are covered. He has Bureau for Medically Handicapped children, after our primary insurance which you have to qualify for. Since October I am now a stay at home mom, just because of all the stress of his disease and I feel like I can take care of him better than a babysitter. Plus it is very hard to keep a job with the hospital stays, home IV, doctor vistis, etc., All of my days are filled with med's, 4 breathing treatments a day, calling insurance companies and about billing statements. Also keeping med's straight with the pharmacy, etc., I am busier now than when I was working! Our doctor is 2 hours away one way and it also makes it difficult when he is in the hospital with 3 other kids at home and another one with special needs of her own. He just had 2 sinus surgeries and they both were over $8500 just for the surgery itself, one he was in there for 1/2 hour and the other for over 3 hours. The disease is very costly! I know our lives would be much different money wise not for the CF.
It is a constant battle with our sons CF, not with just the disease, but with the insurance companies and bills coming in. His prescriptions last year were over $33,000.00 and that is not counting hospital stays and IV med's, home IV, surgeries, cf visits, etc. Luckily right now most of his med's, etc., are covered. He has Bureau for Medically Handicapped children, after our primary insurance which you have to qualify for. Since October I am now a stay at home mom, just because of all the stress of his disease and I feel like I can take care of him better than a babysitter. Plus it is very hard to keep a job with the hospital stays, home IV, doctor vistis, etc., All of my days are filled with med's, 4 breathing treatments a day, calling insurance companies and about billing statements. Also keeping med's straight with the pharmacy, etc., I am busier now than when I was working! Our doctor is 2 hours away one way and it also makes it difficult when he is in the hospital with 3 other kids at home and another one with special needs of her own. He just had 2 sinus surgeries and they both were over $8500 just for the surgery itself, one he was in there for 1/2 hour and the other for over 3 hours. The disease is very costly! I know our lives would be much different money wise not for the CF.
ashton2005
New member
Honestly financially Cf wouldnt be horrible if it wasent for the fact that i feel that i can take better care of ashton than a babysitter could do to treatments 3 times a day and a bunch of meds in the morning and in the evening and his enzymes at every meal. I decided it was easier for me to stay home. We are somewhat lucky we got medicaid for him and my daughter, also we are waiting to hear on SSI so hopefully that will help to. By no means even though we have those it is still stressful because like others mentioned you have the everyday expenses still and also the additional expenses for hospital stays which for us has been all to often for a 4 month old.
As for the emotional and social that is tricky to answer. there are days that are great and everything is wonderful then there are days where you just sit and worry about what tommorrow or even next year will bring (that may just be the fact that ir is still fairly new to me) socially we dont shelter ashton to much unless people are sick he has only been home 3 weeks total out of his life so we havent had any family get togethers since the holidays are past so we will wait and see when that comes. other than that i take him out every once in a while just so that he gets some outside life but no one i dont know gets very close to him and if i do know them i am big on handwaching.
For instance on the treatments we do Pulmuzyme (which is done via the nebulizer) and that is $600.00 a dose. Theres also an expense whenever you have home IV's we havent gotten there yet. Ashton is also on Elecare formula due to milk allergy and that is $50.00-$60.00 a can. but again luckily insurance covers most of this but hopefully that will give you some info to write about.
christi
ashton 4 mo w/ cf
abbi 5 yo without cf
As for the emotional and social that is tricky to answer. there are days that are great and everything is wonderful then there are days where you just sit and worry about what tommorrow or even next year will bring (that may just be the fact that ir is still fairly new to me) socially we dont shelter ashton to much unless people are sick he has only been home 3 weeks total out of his life so we havent had any family get togethers since the holidays are past so we will wait and see when that comes. other than that i take him out every once in a while just so that he gets some outside life but no one i dont know gets very close to him and if i do know them i am big on handwaching.
For instance on the treatments we do Pulmuzyme (which is done via the nebulizer) and that is $600.00 a dose. Theres also an expense whenever you have home IV's we havent gotten there yet. Ashton is also on Elecare formula due to milk allergy and that is $50.00-$60.00 a can. but again luckily insurance covers most of this but hopefully that will give you some info to write about.
christi
ashton 4 mo w/ cf
abbi 5 yo without cf
ashton2005
New member
Honestly financially Cf wouldnt be horrible if it wasent for the fact that i feel that i can take better care of ashton than a babysitter could do to treatments 3 times a day and a bunch of meds in the morning and in the evening and his enzymes at every meal. I decided it was easier for me to stay home. We are somewhat lucky we got medicaid for him and my daughter, also we are waiting to hear on SSI so hopefully that will help to. By no means even though we have those it is still stressful because like others mentioned you have the everyday expenses still and also the additional expenses for hospital stays which for us has been all to often for a 4 month old.
As for the emotional and social that is tricky to answer. there are days that are great and everything is wonderful then there are days where you just sit and worry about what tommorrow or even next year will bring (that may just be the fact that ir is still fairly new to me) socially we dont shelter ashton to much unless people are sick he has only been home 3 weeks total out of his life so we havent had any family get togethers since the holidays are past so we will wait and see when that comes. other than that i take him out every once in a while just so that he gets some outside life but no one i dont know gets very close to him and if i do know them i am big on handwaching.
For instance on the treatments we do Pulmuzyme (which is done via the nebulizer) and that is $600.00 a dose. Theres also an expense whenever you have home IV's we havent gotten there yet. Ashton is also on Elecare formula due to milk allergy and that is $50.00-$60.00 a can. but again luckily insurance covers most of this but hopefully that will give you some info to write about.
christi
ashton 4 mo w/ cf
abbi 5 yo without cf
As for the emotional and social that is tricky to answer. there are days that are great and everything is wonderful then there are days where you just sit and worry about what tommorrow or even next year will bring (that may just be the fact that ir is still fairly new to me) socially we dont shelter ashton to much unless people are sick he has only been home 3 weeks total out of his life so we havent had any family get togethers since the holidays are past so we will wait and see when that comes. other than that i take him out every once in a while just so that he gets some outside life but no one i dont know gets very close to him and if i do know them i am big on handwaching.
For instance on the treatments we do Pulmuzyme (which is done via the nebulizer) and that is $600.00 a dose. Theres also an expense whenever you have home IV's we havent gotten there yet. Ashton is also on Elecare formula due to milk allergy and that is $50.00-$60.00 a can. but again luckily insurance covers most of this but hopefully that will give you some info to write about.
christi
ashton 4 mo w/ cf
abbi 5 yo without cf
I have excellent health coverage, but even with that it gets to be alot. We are the "average" American where we get a bit overwhelmed with co pays (mainly prescriptions) yet its not enough to declare on our taxes. My hubby picked up HIS prescritptions the other day & got a rude awakening. I usually call them in (for him, myself & my daughter), pick them up & pay for them so he really has no idea of how fortunate we have it tho it can be costly. The food & supplements plus cost of transportation to/from my doctor etc are what adds up also. The miscellaneous stuff to get the care/meds needed. That goes with most things tho.
I have excellent health coverage, but even with that it gets to be alot. We are the "average" American where we get a bit overwhelmed with co pays (mainly prescriptions) yet its not enough to declare on our taxes. My hubby picked up HIS prescritptions the other day & got a rude awakening. I usually call them in (for him, myself & my daughter), pick them up & pay for them so he really has no idea of how fortunate we have it tho it can be costly. The food & supplements plus cost of transportation to/from my doctor etc are what adds up also. The miscellaneous stuff to get the care/meds needed. That goes with most things tho.
Our health coverage is good too and prescriptions are covered (w/co pay). Though it is not rare to write a check to CVS for $200 a few times a month for 4-5 prescriptions (co pay $35) and a few extras like saline spray for sinus, vitamins, supplements etc.
Then there's gas going to and from appointments, co-pays, parking and lunch.
When we are in the hospital, we have to pay for the parent's meals.
It all adds up.
Then there's gas going to and from appointments, co-pays, parking and lunch.
When we are in the hospital, we have to pay for the parent's meals.
It all adds up.
Our health coverage is good too and prescriptions are covered (w/co pay). Though it is not rare to write a check to CVS for $200 a few times a month for 4-5 prescriptions (co pay $35) and a few extras like saline spray for sinus, vitamins, supplements etc.
Then there's gas going to and from appointments, co-pays, parking and lunch.
When we are in the hospital, we have to pay for the parent's meals.
It all adds up.
Then there's gas going to and from appointments, co-pays, parking and lunch.
When we are in the hospital, we have to pay for the parent's meals.
It all adds up.