- My husband have been through so much trama since I have been diagnosed . It has been such a long and hard road , through all the testing , treatments and So much money ! Which we dont have . the only saving grace seemed to be that our insurance Seemed to cover Most of the cost. And boy is there alot of that . Well it seems the longer I have CIDP the harder and more extreme my symptoms get . It is attacking my body so strongly and the Pain just seems to get more out of control each day. I cant sleep for more than an hour at a time , Im always covered in sweat because the pain level is so high. it seems like when i open my mouth , Im crying or screaming! Needless to say , its very hard to live with me. Well my husband didnt think it could get worse for us than all our family is going through, well it has .My husband who is really trying to grasp whats going on was given the worst news possible . His job is firing him , and now there is absolutly no way he can take care of all the medical treatments which are necessary for me to exsist. I have 2 IVIG treatments a week sometimes three. in our home . I take 12 different types of meds every day. and they are not stopping the disease from ravaging my body yet. My husband is so afraid of what will happen to me now. Does anyone have any ideas of how or where we can get help to keep my treatments and meds going? I am considered to have extreme CIPD. Thank you happydy42
look into stem cell transplant at NWU in Chicago - it's a clinical trial and may be more helpful than IVIG : at least read about it and talk to your doctor before you lose your insurance. hang in there and know that you are not alone, my heart goes out to you
I don't know where you live, but here in Massachusetts you can apply for Medicaid and they'll cover most if not all of your medical costs. If you're not from Mass., you could look into similar programs in your state/area/country. Best wishes to you and your husband. Henry
My heart goes out to you. I also think you must stay on Cobra and apply for Medicaid right away. I also have extreme CIPD and understand your pain. How can I help?
What does your husband do? Maybe one of us has a contact.
I'm praying, pulling, and hoping for you happy!
Your IVIG brand may have gap therapy. It is for people who lose insurance coverage. Find out what brand and call them.