Aa
need answers
I've had hep c for a long time and 3 times was given interferon, but years ago and those were 3 times a week type.Now I'm told there is a once a week shot which is alot better and thats what I'm trying to get on.I'm on disability and on Medicare in which I'm entitled to get on another plan which Medicare approves. Well now I know this plan is not for me cause of the doctors that are not listed and medicines that I cant get like interferon.Most doctors I go see cant help me cause of the plan I have so it means no medicine unless I pay my 20% which is impossible for me to pay. I try to get out of this plan and get no problems with the insurance company but Medicare tells me I cant until next November.I really cant wait that long cause my symptoms are much worse now like itching and rash all over my body and including my face.Of course my hep c #'s are high and my platelets are low and not going back up, and I feel it is progressing at a faster rate now and very worried.I dont know what stage i'm in and how much longer I have and unless you have a good plan it seems like no one is willing to help.I'm ready to look into a lawyer as long as I dont have to pay but of course dont know if that is possible.What I really need to know is any information about My condition and what I should do and also what I should do with this medical plan I'm stuck into cause of Medicare.Any advise would be appreciated.
Salvo,
Please look into the resources explained here for your meds. My doctor knows my insurance will end in 2 months and said they can get me free meds. The cost of the doctors care is another story..., but you have medicare..
I hope I live long enough to see the day when everyone gets the care they need in this country, and shoot how about every country. Gawd the Junta in "Burma" wont even let aid in to help those devasted by the cyclone. (off track)
So try the ideas mentioned here, good luck.. M4now
Please look into the resources explained here for your meds. My doctor knows my insurance will end in 2 months and said they can get me free meds. The cost of the doctors care is another story..., but you have medicare..
I hope I live long enough to see the day when everyone gets the care they need in this country, and shoot how about every country. Gawd the Junta in "Burma" wont even let aid in to help those devasted by the cyclone. (off track)
So try the ideas mentioned here, good luck.. M4now
Thank you so much for those great words Mr. Hector! You should be a doctor yourself. God bless you, bye.
You will get the meds! Great news! Made my day!!!
Thanks for the update!
Just take it one step at a time. Try not to get overwhelmed. (Easier said then done!!!).
I can see you are "a doer". You will make things happen.
Keep posting. There are many good people here who will help you in whatever way they can.
"my symptoms are much worse now like itching and rash all over my body and including my face. Of course my hep c #'s are high and my platelets are low and not going back up, and I feel it is progressing at a faster rate now and very worried. I dont know what stage i'm in and how much longer I have and unless you have a good plan it seems like no one is willing to help"
Remember there is no correlation between viral load and liver damage. It is the damage to our liver caused by the virus that we want to stop from progressing further. I'm no Spring chicken either. I've had Hep B & C for 38 years and I will be 56 next month.
When you find a doctor. Please get a biopsy to find out the condition of your liver. It's better to know where you stand and then you can make the best treatment choices for yourself. (I am stage 4, cirrhosis, but I still feel pretty good luckily and since I failed therapy (interferon doesn't work in my body) I will be trying to stay as healthy as possible for as long as possible hoping to hang on until there are new therapies or my only other option will be transplant). Sometimes we worry about things we need not. Being knowledgeable about our condition helps us to focus our energies in the most productive directions.
Your platelets are constantly low. Mine are around 70k when not on treatment. Which is normal for persons like myself with cirrhosis, an enlarged spleen and portal hypertension. I'm no brave soul. I didn't sign up for this voluntarily but if I can manage this illness I'm sure you can too. It just takes time to adjust and learn to live with "what is". Life does go on. As long as we have hope we can manage. At first I worried about how much time I had left. I was pretty crasy for the first few months. But now I try to focus on appreciating every day and all the good people and things in my life. I look at what I have, NOT what I don't have or wish I had. And most of the time I feel content with that. I think (and hope) this illness has in some ways made me a wiser and more compassionate person. Which is a good thing!
Keep in touch!
Let us know how you are doing and how we can help.
Hector
Thanks for the update!
Just take it one step at a time. Try not to get overwhelmed. (Easier said then done!!!).
I can see you are "a doer". You will make things happen.
Keep posting. There are many good people here who will help you in whatever way they can.
"my symptoms are much worse now like itching and rash all over my body and including my face. Of course my hep c #'s are high and my platelets are low and not going back up, and I feel it is progressing at a faster rate now and very worried. I dont know what stage i'm in and how much longer I have and unless you have a good plan it seems like no one is willing to help"
Remember there is no correlation between viral load and liver damage. It is the damage to our liver caused by the virus that we want to stop from progressing further. I'm no Spring chicken either. I've had Hep B & C for 38 years and I will be 56 next month.
When you find a doctor. Please get a biopsy to find out the condition of your liver. It's better to know where you stand and then you can make the best treatment choices for yourself. (I am stage 4, cirrhosis, but I still feel pretty good luckily and since I failed therapy (interferon doesn't work in my body) I will be trying to stay as healthy as possible for as long as possible hoping to hang on until there are new therapies or my only other option will be transplant). Sometimes we worry about things we need not. Being knowledgeable about our condition helps us to focus our energies in the most productive directions.
Your platelets are constantly low. Mine are around 70k when not on treatment. Which is normal for persons like myself with cirrhosis, an enlarged spleen and portal hypertension. I'm no brave soul. I didn't sign up for this voluntarily but if I can manage this illness I'm sure you can too. It just takes time to adjust and learn to live with "what is". Life does go on. As long as we have hope we can manage. At first I worried about how much time I had left. I was pretty crasy for the first few months. But now I try to focus on appreciating every day and all the good people and things in my life. I look at what I have, NOT what I don't have or wish I had. And most of the time I feel content with that. I think (and hope) this illness has in some ways made me a wiser and more compassionate person. Which is a good thing!
Keep in touch!
Let us know how you are doing and how we can help.
Hector
thanks for the infor and advise on getting the med through the drug company,I was just contacted and they say I qualify and they will send me some papers for me and the doc to fill out.Thanks again, now all I need to find a doctor thats on my plan that will help me here.
Salvo - Try and contact the drug companies "patient assistance programs" committment to care or peggassist and see if they can help you in any way. I don't know the legalities of having medicare but maybe they would have a good idea.
They did give me my meds for free when I wanted to extend treatment and my insurance would not pay. Maybe they will know some avenue you can use.
Just google them and they will come right up.
They did give me my meds for free when I wanted to extend treatment and my insurance would not pay. Maybe they will know some avenue you can use.
Just google them and they will come right up.
Just want to say thanks for the reply. I know what you mean as far as getting ahead of the cart, but this is been with me a long time( almost 48 years), I'm not a kid any more and I know what I have.I prolly got it from getting stuck by a needle along time ago but thats not important.I had interferon 3 times before and the last time was with the pill ribo, but could not handle it for more than 6 months.Now since I have this ugly looking rash I went back to my old liver doc. and he says I should try this new interferon of once a week shot( which I never tried before) but to get on a trial for this is impossible unless I can find a free trial going cause My insurance wont pay for it.I've had 2 biopsies about 20 years ago and at that time it was OK but now that I dont feel as good and am getting this rash for no reason except its coming from my liver as told to me, I have to wonder where I'm at cause it seems like this is the point of no return.My platelets are as low as 65 and now they are 78 but have not had them over 78 in the last 8 months.The only time my platelets were affected is when I was taking the shots but even after that they were up but now they are down too long.With all the blood work I've had I still dont know what It reads cause I was not interested before but I'll put a few down and maybe I'll get lucky as far as what you were talking about.PLT 65(low),PT 14.9 (h), PTT 32.5 (h), Glucose 163 (h), ALBUMIN 3.2 (L), ,AST 180 (H), ALT 179 (H) IRON 196 (H) and these are just a few.I know there is no answer for all that are still here, but I would like to know where I stand and at what point I'm in.I'm still trying to find a trial going cause I'm screwed with my insurance and the funny part is the insurance will release me but Medicare that is responsible for me wont release me and says I must wait for nov. to get another plan but wont go into affect until 1st of next year.Chit I could be on my death bed by then and I'm still amazed how they can dictate.Well what ever you or anybody can help me with this I sure would appreciate it. THANKS
"I feel it is progressing at a faster rate now and very worried. I dont know what stage i'm in and how much longer I have"
Please don't panic. You are worrying about something (advanced liver disease) that you may not even have. Even with cirrhosis you can live many years. (I know. I have compensated cirrhosis). You need to find out if you really have liver disease and how extensive it is.
Why worry about the cost of medicine when you may not even need medicine???
(A rash all over your body? That is NOT a sign of advanced liver disease!) If you had decompensated cirrhosis you will have many obvious life threatening symptoms and will be in and out of the hospital. You can Google the web for decompensated cirrhosis if you want to find out what the symptoms are.
THINGS YOU NEED TO DO FIRST:
* What genotype are you?
* VL. (Have you had a recent viral load)? You say your hep C levels are high. VL and liver damage are NOT related. VL is important if you are being treated.
* You need to get a liver biopsy. It is still the "gold standard" for determining the status of your liver. Did you ever have at least one done when you did the other treatments? It doesn't matter when. You really need to know the condition of your liver!!! You are getting very worried about something that may be nothing! It takes decades usually for your liver to progress to cirrhosis. Mine took 38 years.
Do you know when you were exposed to the virus?
Or the first time it was discovered that you had non-A non-B hep or HCV?
You've had low platelets for how long? When you say low. How low?
How about your ALT & AST level?
Without this data you are just guessing and worrying yourself for no concrete reason because you really don't know if you have liver damage or how serious it is.
You need to know all the above before you even think about treatment. All those tests must be done for your doctor to know IF you need treatment AND if so, what your chances of clearing the virus are.
Please don't put the cart before the horse. FIRST find out what the status of your HCV and liver are, THEN if necessary find out how to get the meds you need.
$$$$
I know at least one person here on this forum who received all his meds for free. The Roche Patient Assistance program can help you determine eligibility for the program, which provides FREE PEGASYS and COPEGUS to qualified patients.
http://www.rocheusa.com/programs/patientassist.asp
Please get the tests done so you will know what is going on with you.
Hang in there!
Hector
Please don't panic. You are worrying about something (advanced liver disease) that you may not even have. Even with cirrhosis you can live many years. (I know. I have compensated cirrhosis). You need to find out if you really have liver disease and how extensive it is.
Why worry about the cost of medicine when you may not even need medicine???
(A rash all over your body? That is NOT a sign of advanced liver disease!) If you had decompensated cirrhosis you will have many obvious life threatening symptoms and will be in and out of the hospital. You can Google the web for decompensated cirrhosis if you want to find out what the symptoms are.
THINGS YOU NEED TO DO FIRST:
* What genotype are you?
* VL. (Have you had a recent viral load)? You say your hep C levels are high. VL and liver damage are NOT related. VL is important if you are being treated.
* You need to get a liver biopsy. It is still the "gold standard" for determining the status of your liver. Did you ever have at least one done when you did the other treatments? It doesn't matter when. You really need to know the condition of your liver!!! You are getting very worried about something that may be nothing! It takes decades usually for your liver to progress to cirrhosis. Mine took 38 years.
Do you know when you were exposed to the virus?
Or the first time it was discovered that you had non-A non-B hep or HCV?
You've had low platelets for how long? When you say low. How low?
How about your ALT & AST level?
Without this data you are just guessing and worrying yourself for no concrete reason because you really don't know if you have liver damage or how serious it is.
You need to know all the above before you even think about treatment. All those tests must be done for your doctor to know IF you need treatment AND if so, what your chances of clearing the virus are.
Please don't put the cart before the horse. FIRST find out what the status of your HCV and liver are, THEN if necessary find out how to get the meds you need.
$$$$
I know at least one person here on this forum who received all his meds for free. The Roche Patient Assistance program can help you determine eligibility for the program, which provides FREE PEGASYS and COPEGUS to qualified patients.
http://www.rocheusa.com/programs/patientassist.asp
Please get the tests done so you will know what is going on with you.
Hang in there!
Hector
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