Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 You didn't give your name but that is alright because all of us on this board are in the same boat and we all feel the pain that you are in. I hope you don't mind me asking you this but have you been to your local medicaid office to see about getting medicaid for your husband. I don't know what kind of work you do are how much you make but he may qualify for medicaid which is state insurance for those that can not afford it and can not qualify for Medicare at the time. It never hurts to check out all of your options and don't take no for an answer just keep trying. I don't know what your doc put him on but there isn't much they can do for us except oxygen therapy. I have been on O2 24/7 ever since I was diagnosed in Jan 2003. That is about the only thing that they know for sure will help. I was put on a bunch of meds when first diagnosed that is used for other things and they had so many side effects that the doctors finally said no more. The one thing that they use most often is Prednisone and it may help some and not others. Just don't give up on trying to get the help that you need for your husband. You will find that this board is a wealth of information and has so many caring people on it. We are a mixture of people and places but we care and we will show it to you and your husband. We may not always answer right away but we will answer if we have a possible answer that will help you. The biggest thing to remember is to keep a positive attitude and know that there are those out here that know what you and your husband are going through. Hugs and Prayers! Barbara R IPF 1/2003AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 , This is a disease that there is no treatment for. Most doctors that are not familiar with the disease and don't realize that there is no aggressive treatment for the monster. Talk to your doctor and get him to give you the letter for the politician and let him do what he can to see if you can help. Sometimes they can help more than we realize. Just don't give up and keep praying. Hugs and Prayers! Barbara R IPF 1/2003AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 is he eligible for medical assistance from the state? some of the drug companies advertise that they will supply the meds even if you can't afford them. you might want to check this out. pink joyce eyejustam wrote: My husband was just DX with IPF, PAH and Emphysema. We have no insurance. Saying this is overwhelming is an understatement. He has filed for disability but that takes about 4 months. I called the pharmacy to get a price on one of the RX the pulmonary doctor said would help him and for a one month supply it is $980. The doctor said he can't tell us this is not terminal. It will result in his death. My husband could live 2 months or 2 years. They don't know. He has been sick for a long time. At least since 1992. He had pnuemonia 6 times in the last year. He spent 2 days in the hospital a few weeks ago and that bill was $20,000. I have a job but no insurance and SSA says no medical coverage until 24 months after disability. Our congressman says he can get it put through asap if doctor puts in writing that this is terminal. I guess I am just venting. It seems like one brick wall after the other. Does the government hope my husband will die before they have to cover him? How do they define terminal? The rep says it does not have to mean he will die in 6 - 8 months. It just has to mean that his condition will result in his death. Any one of these things will result in his death. The other half of my soul is dying and because of lack of money and insurance he has to suffer. He is in constant pain, dizzy, headache, shortness of breath, racing heartbeat, even just sitting. He had to get all of his hair cut off because he didn't have the energy to wash his hair and take a shower. It was either one or the other. Going to the bathroom is a workout all of its own. I am sorry to ramble. I don't know what to do. I work full time and I am scared to death every day that when I come home at lunch or after work that I am going to find him dead. Our family doctor sent him to a pulmonary doctor. We paid him $300 to confirm what the CT scan showed and to be told "you have no insurance, there is nothing we can do for you". When our family doctor called the PD to ask why he didn't do something he referred to my husband as "the guy with the tattoos and no insurance, no nothing we can do for him". Makes you feel all warm and fuzzy inside. Lord give us strength.Pink Joyce IPF 3/06 It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Hi Eyejustam, go under "FreeRX" in your search engine, this will bring up a lot of good sites for free meds. Even in TN they can push thru SS if you are terminal. Where do you live? I am so sorry that you had to join us, but hope you are glad you did. We will help you all we can. A HP 6/06TNeyejustam wrote: My husband was just DX with IPF, PAH and Emphysema. We have no insurance. Saying this is overwhelming is an understatement. He has filed for disability but that takes about 4 months. I called the pharmacy to get a price on one of the RX the pulmonary doctor said would help him and for a one month supply it is $980. The doctor said he can't tell us this is not terminal. It will result in his death. My husband could live 2 months or 2 years. They don't know. He has been sick for a long time. At least since 1992. He had pnuemonia 6 times in the last year. He spent 2 days in the hospital a few weeks ago and that bill was $20,000. I have a job but no insurance and SSA says no medical coverage until 24 months after disability. Our congressman says he can get it put through asap if doctor puts in writing that this is terminal. I guess I am just venting. It seems like one brick wall after the other. Does the government hope my husband will die before they have to cover him? How do they define terminal? The rep says it does not have to mean he will die in 6 - 8 months. It just has to mean that his condition will result in his death. Any one of these things will result in his death. The other half of my soul is dying and because of lack of money and insurance he has to suffer. He is in constant pain, dizzy, headache, shortness of breath, racing heartbeat, even just sitting. He had to get all of his hair cut off because he didn't have the energy to wash his hair and take a shower. It was either one or the other. Going to the bathroom is a workout all of its own. I am sorry to ramble. I don't know what to do. I work full time and I am scared to death every day that when I come home at lunch or after work that I am going to find him dead. Our family doctor sent him to a pulmonary doctor. We paid him $300 to confirm what the CT scan showed and to be told "you have no insurance, there is nothing we can do for you". When our family doctor called the PD to ask why he didn't do something he referred to my husband as "the guy with the tattoos and no insurance, no nothing we can do for him". Makes you feel all warm and fuzzy inside. Lord give us strength. Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Thank you all for your responses. We are in SC. My name is and my husbands name is . I have checked into the drug companies programs. I make $114 too much a month to meet their qualifications. Becasue I have a job we do not qualify for SSI or Medicaid. PD told us O2 was expensive since we don't have insurance. I don't know if the DX's are considered terminal. My husband asked the PD to tell me that his condition was not terminal. The PD said he couldn't tell me that. It will eventually lead to his death. I will be calling our family doctor at 9 to see if he will put it in writng. Then our congressman can put it through asap and he will have medical coverage. I just don't see that happening. Everything we read about IPF, PAH and Emphysema says the outcome is the same, death. Is that not terminal? Our family doctor wants us to find a PD that will treat this aggressively. But that takes lots of money. We just don't have it. We don't have any kids living at home but we have several that we have been helping finacially with medical issues too. We also help my parents. My dad has leukemia. Now we have to help ourselves. Thank you for the information you have provided. It is greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Dear , I'm so sorry that you and are going through this nightmare. However you are not alone. Based on his pulmonary fibrosis diagnosis alone he should be able to qualify for SSDI. I just received my approval a few weeks ago and it's a huge relief to have at least a small income again. I would definitely be assertive in asking the doctors for whatever documentation you need to get help. I was horrified to read how the pulmonary doctor referred to your husband ("the guy with tatoos and no insurance"). That is completely unprofessional and unacceptable. Please call the folks at the Caring Voice Coalition. They are there to help people in your exact situation. You can get the number on this groups main website. We'll be here to support you in any way we can. We're all in this together! Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Re: Husband just DX Thank you all for your responses. We are in SC. My name is and my husbands name is . I have checked into the drug companies programs. I make $114 too much a month to meet their qualifications. Becasue I have a job we do not qualify for SSI or Medicaid. PD told us O2 was expensive since we don't have insurance. I don't know if the DX's are considered terminal. My husband asked the PD to tell me that his condition was not terminal. The PD said he couldn't tell me that. It will eventually lead to his death. I will be calling our family doctor at 9 to see if he will put it in writng. Then our congressman can put it through asap and he will have medical coverage. I just don't see that happening. Everything we read about IPF, PAH and Emphysema says the outcome is the same, death. Is that not terminal? Our family doctor wants us to find a PD that will treat this aggressively. But that takes lots of money. We just don't have it. We don't have any kids living at home but we have several that we have been helping finacially with medical issues too. We also help my parents. My dad has leukemia. Now we have to help ourselves. Thank you for the information you have provided. It is greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 eyejustam from Sher... I'm frustrated along with you and I'm so sorry you and are having such a difficult time right when you have special needs. I don't have any new information other than what you have been given already but I can relate somewhat, although I am older I think. I am 68 and as my disease progresses it becomes harder financially due to what you experience. A bit too much money here, can't qualify there, on and on and our needs go unmet.We are on a limited income, being seniors and I share your concerns although yours are much greater than my own.Stay close to the board, there is strength here and we all bond very quickly.What is your first name and where do you live?I'm in Oregon, diagnosed a year ago with ipf. You and are in my prayers!Sher ipf 3-06 "Don't worry about tomorrow, God is already there". On Wed Feb 28 5:46 , 'eyejustam' sent: Thank you all for your responses. We are in SC. My name is and my husbands name is . I have checked into the drug companies programs. I make $114 too much a month to meet their qualifications. Becasue I have a job we do not qualify for SSI or Medicaid. PD told us O2 was expensive since we don't have insurance. I don't know if the DX's are considered terminal. My husband asked the PD to tell me that his condition was not terminal. The PD said he couldn't tell me that. It will eventually lead to his death. I will be calling our family doctor at 9 to see if he will put it in writng. Then our congressman can put it through asap and he will have medical coverage. I just don't see that happening. Everything we read about IPF, PAH and Emphysema says the outcome is the same, death. Is that not terminal? Our family doctor wants us to find a PD that will treat this aggressively. But that takes lots of money. We just don't have it. We don't have any kids living at home but we have several that we have been helping finacially with medical issues too. We also help my parents. My dad has leukemia. Now we have to help ourselves. Thank you for the information you have provided. It is greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Thank you Barbara and Beth. I know our family doctor means well. But I really think that he believes that because has just been DX that he has 10 to 20 years. That is not the case of that I am sure. I see what is happening before my eyes. He has gone down hill since December, very quick. And that was before we knew what was wrong with him. His symtoms are not getting better. I have left a message for the doctor to call me so I can tell him what our congressman's rep has said to do. I just don't feel hopeful. I will call the coalition and see how they can help. Quote Link to comment Share on other sites More sharing options...
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