Can anyone help?

jchelle

New member
hi, my name is rochelle and my husband has cf. im not too sure of the type that he has, but he does not have any medicine because he does not have medical insurance. he threw up the other day and there was quite a bit of blood in there, and he cannot breathe barely at all. He cant lay down or sleep whats so ever. I dont know what to do, or how to help him, does anyone know what i can do?
 
G

Guest

Guest
Can you apply for SSDI? Having CF and no health insurance is basically a non-starter. Get him health insurance ASAP!!!! And before that, take him to an ER and get him the help he needs.
 

jchelle

New member
he has applied for SSI and SSDI 4 times and they have denied him each time, they say that he can do a customer service job, because according to the doctors, he has a mild case and even though his PFT is at 46% and lower they say he can still work... when he first applied for it his PFT was at 34% and they still denied him. his doctors tell him to wait til obama care kicks in and also the hospitals just give him a breathing treatment and send him home....
 

azdesertrat

New member
First: If he's bringing up blood and is in pain (you didn't say he was, but usually when I was like that, I was) & can't breath neither lying down nor sitting up he should probably go to the ER.
Second: does he work? If so, is he in a lower income bracket? Usually, the state has some sort of Medicaid program for people in situations like what people with CF find themselves in.
Third: I would consult with a hospital Social Worker. They usually are goldmines of info RE: how to pay for CF. If that fails, does he have a CF Pulmonologist? If so, the staff should have some info on what to do to pay for all this crap.
Hope this helps.
 

jchelle

New member
he is constantly in pain, blood or no blood...he has gone to the er and they give him a breathing treatment, send him home n tell him to go see his CF doc, which then tells him there is nothing they can do. he does work, hes a plumber he has done the social work thing before and they tell him that he makes too much money to help, even though its not much more than anyone else makes....the state is not much help either, we have tried the medicaid thing also, and he was denied. if you dont mind me asking, how old are you????
 

CureCF4Teo

New member
I heard most recently that they are no longer giving benefits to people with CF automatically due to the nature of the disease being terminal/life threatening. I heard they are coming up with new criteria such as you must have been in the hospital 3x that year and had PFT's that were very low at least 3x in a year. Personally, I think this is Ludacris! But, my best advice would also be to contact your social worker on your cf team. They are a bundle of resource and can usually help you navigate most issues.
 

Remus15

New member
Rochelle,
I am new to this site, but happened to read your post. If you haven't done this already, I would suggest that you call The CF Patient Assistance Foundation. The CFPAF is part of the CF Foundation that exists to help alleviate some of the financial burden that prevents access to adequate care for cf. The number to CFPAF is 888.315.4154. I hope this helps!
 
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