I wish I could do something

[mousesmom]

My friend Lindiwe's daughter Constance 16 years old, has been having a really bad year so far. She goes into hospital for 3 weeks treatment and is only out for 2 weeks then needs to return again. She mostly cultures a resistant Psuedomonas.
The Dr's have suggested a transplant but Lindiwe is a sigle parent with a low income so she can't afford medical insurance, without which they won't be able to obtain funding.

When not in hospital Constance is alone at home during the day hooked to O2 24/7. Nothing ever seems to go right for them, and she and her mother are such sweet, wonderful people.

I feel so helpless, I whish I could win the Lotto or something, so I could pay for a transplant and anything else that could help her. I kind of feel guilty that Monique is doing so well.

Sorry, just needed to vent - CF really does suck!!

 

[mousesmom]

My friend Lindiwe's daughter Constance 16 years old, has been having a really bad year so far. She goes into hospital for 3 weeks treatment and is only out for 2 weeks then needs to return again. She mostly cultures a resistant Psuedomonas.
The Dr's have suggested a transplant but Lindiwe is a sigle parent with a low income so she can't afford medical insurance, without which they won't be able to obtain funding.

When not in hospital Constance is alone at home during the day hooked to O2 24/7. Nothing ever seems to go right for them, and she and her mother are such sweet, wonderful people.

I feel so helpless, I whish I could win the Lotto or something, so I could pay for a transplant and anything else that could help her. I kind of feel guilty that Monique is doing so well.

Sorry, just needed to vent - CF really does suck!!

 

[mousesmom]

My friend Lindiwe's daughter Constance 16 years old, has been having a really bad year so far. She goes into hospital for 3 weeks treatment and is only out for 2 weeks then needs to return again. She mostly cultures a resistant Psuedomonas.
<br />The Dr's have suggested a transplant but Lindiwe is a sigle parent with a low income so she can't afford medical insurance, without which they won't be able to obtain funding.
<br />
<br />When not in hospital Constance is alone at home during the day hooked to O2 24/7. Nothing ever seems to go right for them, and she and her mother are such sweet, wonderful people.
<br />
<br />I feel so helpless, I whish I could win the Lotto or something, so I could pay for a transplant and anything else that could help her. I kind of feel guilty that Monique is doing so well.
<br />
<br />Sorry, just needed to vent - CF really does suck!!

 

[jpetersen]

Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to avoid cross-contamination with those resistent bugs?

 

[jpetersen]

Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to avoid cross-contamination with those resistent bugs?

 

[jpetersen]

Is she compliant in every other way if their income is so low? Perhaps there are some medical support systems there in S.A. that can get her Cayston or TOBI/tobra that will help when not in the hospital. Another thing to consider is the situation in the hospital - private room? Good standards to avoid cross-contamination with those resistent bugs?

 

[mousesmom]

She is compliant with her treatment, but lives in a rural township where there is a lot of dust which I'm sure doesn't help much.

In SA Cayston is just a dream and Tobi is only available to those that can afford it. Gentamycin inhalations and 5% Saline is provided by the State hospital, they are also good at providing private/ wards and avoiding cross-contamination.

Her mother thinks that there may be somethin wrong with the concentrator she has because when she got to the emergency room yesterday her O2 was 65%, but once they had her on O2 at the Hospital it went up to 85% within two hours.

 

[mousesmom]

She is compliant with her treatment, but lives in a rural township where there is a lot of dust which I'm sure doesn't help much.

In SA Cayston is just a dream and Tobi is only available to those that can afford it. Gentamycin inhalations and 5% Saline is provided by the State hospital, they are also good at providing private/ wards and avoiding cross-contamination.

Her mother thinks that there may be somethin wrong with the concentrator she has because when she got to the emergency room yesterday her O2 was 65%, but once they had her on O2 at the Hospital it went up to 85% within two hours.

 

[mousesmom]

She is compliant with her treatment, but lives in a rural township where there is a lot of dust which I'm sure doesn't help much.
<br />
<br />In SA Cayston is just a dream and Tobi is only available to those that can afford it. Gentamycin inhalations and 5% Saline is provided by the State hospital, they are also good at providing private/ wards and avoiding cross-contamination.
<br />
<br />Her mother thinks that there may be somethin wrong with the concentrator she has because when she got to the emergency room yesterday her O2 was 65%, but once they had her on O2 at the Hospital it went up to 85% within two hours.

 

[JustDucky]

Hello Joanne....that is heartbreaking regarding your friend's daughter. Because she is low income, she should be able to get help with these meds such as TOBI and Cayston. She should contact the company to check the programs out. I believe pulmozyme also has a similar program. It sucks that lack of insurance stands in the way of a transplant and other needs. As far as the concentrator, she should talk to the company she bought/rents it from. If she rents it, they should be able to give a replacement to her at no extra cost. I know these things come with warranties, so even if she bought it, she should be covered somehow. The social worker in her clinic, has she talked to her as well? They are invaluable as far as obtaining meds, help etc. Where does your friend live? In the states? I know that in NY, there is a program that even if you make too much for state insurance, there is affordable insurance for kids regardless of pre existing conditions. The fee is on a sliding scale, I pay 9$ for each of my kid's policies and they cover pretty much everything until they are 19 yrs old.

I hope she is able to get somewhere with all of this, she must be overwhelmed! Keeping them in my thoughts and prayers,
Jenn

 

[JustDucky]

Hello Joanne....that is heartbreaking regarding your friend's daughter. Because she is low income, she should be able to get help with these meds such as TOBI and Cayston. She should contact the company to check the programs out. I believe pulmozyme also has a similar program. It sucks that lack of insurance stands in the way of a transplant and other needs. As far as the concentrator, she should talk to the company she bought/rents it from. If she rents it, they should be able to give a replacement to her at no extra cost. I know these things come with warranties, so even if she bought it, she should be covered somehow. The social worker in her clinic, has she talked to her as well? They are invaluable as far as obtaining meds, help etc. Where does your friend live? In the states? I know that in NY, there is a program that even if you make too much for state insurance, there is affordable insurance for kids regardless of pre existing conditions. The fee is on a sliding scale, I pay 9$ for each of my kid's policies and they cover pretty much everything until they are 19 yrs old.

I hope she is able to get somewhere with all of this, she must be overwhelmed! Keeping them in my thoughts and prayers,
Jenn

 

[JustDucky]

Hello Joanne....that is heartbreaking regarding your friend's daughter. Because she is low income, she should be able to get help with these meds such as TOBI and Cayston. She should contact the company to check the programs out. I believe pulmozyme also has a similar program. It sucks that lack of insurance stands in the way of a transplant and other needs. As far as the concentrator, she should talk to the company she bought/rents it from. If she rents it, they should be able to give a replacement to her at no extra cost. I know these things come with warranties, so even if she bought it, she should be covered somehow. The social worker in her clinic, has she talked to her as well? They are invaluable as far as obtaining meds, help etc. Where does your friend live? In the states? I know that in NY, there is a program that even if you make too much for state insurance, there is affordable insurance for kids regardless of pre existing conditions. The fee is on a sliding scale, I pay 9$ for each of my kid's policies and they cover pretty much everything until they are 19 yrs old.
<br />
<br />I hope she is able to get somewhere with all of this, she must be overwhelmed! Keeping them in my thoughts and prayers,
<br />Jenn

 

[JustDucky]

Just read that you are from South Africa....I am not familiar at all with health care from that region of the world, I just hope your friend can get help for her daughter....

Jenn

 

[JustDucky]

Just read that you are from South Africa....I am not familiar at all with health care from that region of the world, I just hope your friend can get help for her daughter....

Jenn

 

[JustDucky]

Just read that you are from South Africa....I am not familiar at all with health care from that region of the world, I just hope your friend can get help for her daughter....
<br />
<br />Jenn

 

[mousesmom]

Thanks for the kind thoughts and advice.

It just makes me mad when I see government officials ride around in luxury vehicles, half the money that they cost, would pay the medical costs for Connie's liftime, and a probably quite a few other disadvantaged children.

 

[mousesmom]

Thanks for the kind thoughts and advice.

It just makes me mad when I see government officials ride around in luxury vehicles, half the money that they cost, would pay the medical costs for Connie's liftime, and a probably quite a few other disadvantaged children.

 

[mousesmom]

Thanks for the kind thoughts and advice.
<br />
<br />It just makes me mad when I see government officials ride around in luxury vehicles, half the money that they cost, would pay the medical costs for Connie's liftime, and a probably quite a few other disadvantaged children.