Hockey Gal, I don't think it's necessary to see both a GI doc and a hepatologist. If your GI doc only deals with hep C, that's a big plus. I hear you on the "used to be active, now not up to doing much." People just did not understand when I went from working full time to part time (and eventually going on SSD.) It was necessary for me to take afternoon naps, and I had one friend who actually laughed at me. That truly offended me and I let her know it wasn't funny--that it was a result of hep C. Needless to say, some friends drifted away, as I could not keep up with them. I was very active, also, prior to this disease.
I will tell you that it took 2 years for me to get approved for SSD. And it wasn't a result of liver cancer, as that had not yet been diagnosed, nor was it on hep C alone. It was basically because I had bilateral hip replacements with two revisions on the left. I also had some depression. The fact that you have herniated disks, in addition to hep C, will go in your favor. If you are also on antidepressants or have any other mental or emotional illness, that will also be in your favor. Expect to get turned down the first time. At that point, I recommend getting a good lawyer.
Connie, Finally another person who deaing with someone not understanding & making u feel like your lazy!!... it is not a friend but my only sister(younger) she thinks that I have given up & have no ambition anymore. I am not speaking to her & havent for about 2 months.. I miss her & my neice but I cant handle the stress she makes me feel right now. I think she is in denial that something is really wrong due to I was the one who kept on top of things & kept family on their toes. now I am taking it easy & trying to get better. I had to move in with mom due to job issue, its working out ok she is alone when my step dad dies in 2006 of lung cancer & cirrosis. I just pray she(sis) will understand and see that all I want and need from her is to be my sister.. anyway enough of that. I was denied 1st & 2nd time now on hearing level, I have a company called Allsup helping me with case, I applied in 8/07, they are great, doing all the paperwork etc. I have a ton of medical records & also info from mental drs as well I have been told by most of Dr's I am depressed as well I was on Lexapro but had to ween off due to cant pay for & did not like effects of meds.. I am doing pretty good without, my kids & grandchild keep me going & I need to be here for them. I thank you for the input & thanks for listening.. god bless
Lucy& Cary, thanks for the imput. yes it is good to talk to others who are going thru same things. I cant tell you how much I appreciate it. this has taught me to be patient and that every day is a blessing & that we will all be ok. I have had alot of obstacles thru my 43yrs of life & got thru all of them but this one is the scariest, just knowing a virus is destroying by body.. sometimes I wish I had never found out, but I did so I am dealing with it I just wish my family could be more understanding.. I try to educate them so they can but they dont want to hear it ( what stage 3 is, why so fatigued, hurt all over, sick etc) I think they are afraid to accept it, deal with & move on.. I now am focusing on spending time with my kids and grandson they are my life, dont have many friends but thank you for listening... Is it obsessing about it to do research on disease? that is one of things my Sis has said to me.I dont feel it is I just want to be educated & 1 step ahead..
Leslie, your sister sounds like she is in denial that you have a chronic condition. It is necessary for you to learn all you can about the disease. Knowledge is power. How can you fight a disease you know nothing about? I hope in time she will be willing to listen to you and to learn more about this disease. You are not "obsessing." You are learning, and you also need support from those of us going through the same thing. I do suggest you stick to reputable sites, such as this one, and the American Liver Foundation, etc. Mayo and other hospitals also have good info on hep C on their web sites.
Leslie, I got approved for SSD just before it was going to a hearing. My lawyer said they often do that. It's good that you have a lot of medical records.
I also wanted to mention that my b.f. of 13 years broke up with me last Dec., just prior to my first hernia repair. I think it all became too much for him. We are still good friends, but don't have the relationship we once did. This disease robs us of relationships, jobs, and an active life.
Connie I am sorry about your b.f. I have not have serious relationship for a while I have been divorced since 98 & had boyfriend in 2000 but he decided to go back to wife... but since I was diagnosed in 2005 I have been afraid to get into a relationship because of hep c I am the type of person that goes right to the truth & would probably tell them on the 1st date so its just easier not to. & really I am not in any hurry to get with someone I would not want to put all my issues on someone else & make them feel like they have to take care of me, after divorce I am more independent than I have ever been. I know some day will happen but not right now.
butterflythree thanks for the reasurance of doing research I am continuing that & I have my mom who is very supportive & helping me alot, she is learning too.
Connie thats great about ssd, my atty rep told me that I may get approved b4 a hearing, they send all my info to judge & sometimes get approval without hearing should know in about 6 to 8 mo is what she said so just a waiting game,,,,, as Joyce Meyer always says "Keep on Keepin on"
My favorite one is "I may not be where I want to be but Thank God I am not where I used to be"
thanks for support
Thanks Mary I applied in 8/07 & now on hearing level I am company called Allsup heliping me. they do all the paperwork. ? once your husband got approved did he automatically get medicare/medicaide? on the SS web site it states that you have to be on disability for 2 yrs b4 getting? I am 43yrs old does that matter?
Leslie, they consider the two years to be from the date you first applied for SSD. In my case, Medicare kicked in right away, as they took two years to finally approve my claim. I don't believe your age matters. You may be able to get Medicaid in the interim and/or in addition to Medicare, if your income is low enough. Medicaid pays my Medicare Part B premium and my drug plan premium, which is a big help.
Thanks for all the good info. I have sent a letter to my Cobra insurance asking for extention since runs out 1/09 & also included letter from dr stating how important treatment is & need to do for full year but only have 5 mo of insurance so we shall see.. today i met a gal from a support group locally, awsome gal!! she has been thru alot of treatment & helped me a great deal , she also stated may be able to get meds for little or no costs & gave me info but I need to have med ins to be monitored by Dr so I pray will work out due to I have no income & family does not have means to pay for expensive medical care, I will check info state aid etc. I have faith will work out. we had chinese food tonight & fortune cookie said my image will inspire others.. that tells me I am to get more involved with fighting this disease & help others, so having this illness is a curse but also a blessing to help with what I canVIEW IMAGE.. I pray for each & everyone out there fighting this uphill battle god bless
Mer, why was your hubby not eligible for Medicare? Age? I didn't realize that Medicare has state guidelines. I know that Medicaid does and that, if eligible, it will kick in right away. I didn't get it because there was no gap between the time I was approved and when I got Medicare. However, as I said, they do pay my premiums.
You are right, all pharmaceutical companies have what is called "indigent drug programs." Your doctor would need to fill out the specific drug manufacturer's form, or write a letter and enclose a prescription for what you need. Basically, it says that the particular drug is medically necessary, but that you are unable to afford it. When I worked in a doctor's office, I wrote these letters for the doc to sign. Some companies provide coupons that you present at the drug store. Other companies will send a 3-month supply to your doctor's office, where you can pick it up. Here's a link to more info:
Post Edited (hep93) : 9/15/2008 10:27:48 PM (GMT-6)
Butterfly, you are correct about Medicare except that it's from the date he applied, not from the date approved, assuming one is approved, of course. As you said, that's why you got it retroactively for the previous year, since it took them 3 years to approve.
My ex b.f. got approved for SSD within 9 mos., so he had to wait for over a year for Medicare to kick in. During the time he was w/o insurance, he got his care free through a teaching hospital.