Aa
Too old, stage 4 cirrohosis, depression equals no tx?
Just met my new G.I. HCV doc (Kaiser). I was told that because I am 67 y.o. male, w/history of depression, and possible stage 4 cirrohsis that I will not be considered as a candidate for tx.
Does this sound reasonable? I have had this diagnosis since '92 and have had Kaiser in two different locations over 10 years.
I had really put a lot of hope on getting tx and getting well.
What is left for me? Is this the end of the line, I just wait to get so sick I may or may not get a transplant? I don't feel I can take a job in good conscence becuase my energy is all over the map. Somedays I am pretty energetic and other days I can't focus enough to read a classified ad or get out of my own way.
Any light you can share?
Thanks, Que
Does this sound reasonable? I have had this diagnosis since '92 and have had Kaiser in two different locations over 10 years.
I had really put a lot of hope on getting tx and getting well.
What is left for me? Is this the end of the line, I just wait to get so sick I may or may not get a transplant? I don't feel I can take a job in good conscence becuase my energy is all over the map. Somedays I am pretty energetic and other days I can't focus enough to read a classified ad or get out of my own way.
Any light you can share?
Thanks, Que
You are right -- if the drug is not on the list, you just have to pay for it. Since there are only 100 rx on the list, you'd think I would be able to find a list somewhere, but I havent yet.
On tax returns -- Can't compete with H&R Block's lottery -- get back double your refund campaign..... you still get what you pay for there......... yada yada yada
On tax returns -- Can't compete with H&R Block's lottery -- get back double your refund campaign..... you still get what you pay for there......... yada yada yada
Guy, i don't think i've ever run across a finer human being, if everyone had your personality and attitude the world would be a hell of alot better place.
Weather at work or at home when i have that riba urge to blow i've often thought, strator. Its works more times then not. All the money in the world couldn't bye what you have. Good luck to you and just keep being "strator".
Weather at work or at home when i have that riba urge to blow i've often thought, strator. Its works more times then not. All the money in the world couldn't bye what you have. Good luck to you and just keep being "strator".
Have you looked into any clinical trials? I am female, age 62 and have responded & then relapsed twice. Peh-Intron/ Riba-48 wks.,Infergen/ Riba, 52 wks. Pegasys Maintainence, presently.
(Sch 503034) is a protease inhibitor which is getting ready for phase 2 studies at the University of Miami,(FL.)My Hep C Specialist is attempting to get me into this study. It has been fast tracked and phase 1 had great results. You might check in your area to see if a hospital is providing this study. Shands is also getting ready in April for a study, but I am not sure if it's the same meds.
I am a 1B, grade 3, stage 4. I will try anything that's available to rid myself of this disease. Hang in there and find a Hepatologist who is dedicated to eradicating this disease.
Please let me know what's going on, and Hey, we are still young enough for everything. Don't let anybody tell you any different.
(Sch 503034) is a protease inhibitor which is getting ready for phase 2 studies at the University of Miami,(FL.)My Hep C Specialist is attempting to get me into this study. It has been fast tracked and phase 1 had great results. You might check in your area to see if a hospital is providing this study. Shands is also getting ready in April for a study, but I am not sure if it's the same meds.
I am a 1B, grade 3, stage 4. I will try anything that's available to rid myself of this disease. Hang in there and find a Hepatologist who is dedicated to eradicating this disease.
Please let me know what's going on, and Hey, we are still young enough for everything. Don't let anybody tell you any different.
Thanks for the info, and yes it is a mess. But it seems anything the goverment does is. I see your a CPA. Im no CPA but i did work many years part time for H & R crock. Just where in the hell do the IRS find these people that create these forms? I still do some on the side for family and friends and it never ceases to amaze me. Remember when they first come out with the new schedule D form a few years back? what a joke. And now the form 8283 what a waste. Oh well go figure.
Sorry your havinga tough time, but try not to jump the gun. Sounds like there are options to explore. I guess it's natural that they always are going to factor age in with tx of anything, same as with surgeries. As we age more there is more threats of blood pressure problems and all. But what one dr says isn't final. They refused to do spinal surgery on my father at 72 cause of his age. He's now 83 and just had the spinal surgery in November. Same hospital, different chief of nuerology. He's doing okay.
The majority of the people here seem to be in the 40 to 60 range, but I read in the paper recently that in Japan they have a higher percentage of people 10 to 15 years older than the norm here. I dunno, maybe it spread there earlier or maybe they do more testing. They mentioned in the paper a higher incidence of older patients going through dose reduction or stopping treatment. Key there is a higher percentage, not all. None of us are guaranteed tx will work. Things are so random I don't see how they can deny tx for age when they can't even guarantee who the meds WILL work for. Considering there are probably a lot of people walking around that may have hep c but don't kow it, there is probably going to be a lot of patients in a higher age bracket seeking or needing tx in the coming years. There are a lot of people here that know more about advanced damage treatment than me. There are also a number of people that have treated numerous times in different ways. There is always hope.
Can do man -You better keep driving everyone 'crazy', you sure been helpin a lot lately. Speechless indeed.
Be Well,
Don
The majority of the people here seem to be in the 40 to 60 range, but I read in the paper recently that in Japan they have a higher percentage of people 10 to 15 years older than the norm here. I dunno, maybe it spread there earlier or maybe they do more testing. They mentioned in the paper a higher incidence of older patients going through dose reduction or stopping treatment. Key there is a higher percentage, not all. None of us are guaranteed tx will work. Things are so random I don't see how they can deny tx for age when they can't even guarantee who the meds WILL work for. Considering there are probably a lot of people walking around that may have hep c but don't kow it, there is probably going to be a lot of patients in a higher age bracket seeking or needing tx in the coming years. There are a lot of people here that know more about advanced damage treatment than me. There are also a number of people that have treated numerous times in different ways. There is always hope.
Can do man -You better keep driving everyone 'crazy', you sure been helpin a lot lately. Speechless indeed.
Be Well,
Don
Strator said......Can do man -You better keep driving everyone 'crazy', you sure been helpin a lot lately.
________________________________________________________________
Hmmm, Thanks i think???
Besides the itch, hows everything going?
________________________________________________________________
Hmmm, Thanks i think???
Besides the itch, hows everything going?
Frustrating, a little burnt out, but better'n a couple of weeks ago. Economics are weighing on me equally with tx. Lost a lot of the construction type work the last month. Some days it's " hmmm, dog food, supper or itch lotion. But it's always been feast or famine in my life. Good news is somebody threw me a bone -designing PowerPoint presentations(use to do that for some biggie corporations). So I got xtra $ and some inside work but can get really stressed with time crunch. Some hours of the day I almost forgetI'm on tx. Nights are rough, but hey I was up an extension ladder in the snow most of the other day. So I can't be that bad.
Thanks hope you are well,
Don
Thanks hope you are well,
Don
One other thing, am i right that if the drug is not on their list and you pay for it. That it does not count towards your out of pocket or your deductible? Thanks
Yesterday I went to a seminar on Medicare Part D. The new prescription program is hard to understand and it is hard to decide what the best plan it. All of the plans cover a list of "formulary" prescriptions - these are the top 100 prescriptions presently prescribed for people over 65. Each plan can choose which of these 100 prescriptions it will offer. I was most curious to find out if the meds to treat Hepatitis C were on the formulary list.
I went to the websight---- medicare.gov -- and went thru the steps to find out if my drugs would be cover (it is not for the weak of heart, I tell you -- plan to use up some time). Had to borrow a medicare ID number and eligibility date to do so. You type in your zip code and it gives all the plans available in your region - there are 55 here in Texas. I followed the steps and finally got to step 4 - Medication and pharmacy selection. The program allows you to type in your meds, and compare plans. I typed in the Pegasys, Ribavivin, Neupogen, and Procrit and it gave me the expected cost per year. I didn't check out all the options, but the estimated annual cost ranged from $5716 on up.
The point is, these drugs appear to be on the forumlary list. That means they are in the top 100 drugs prescribed for people over 65. So why, then should you be excluded becuse you have depression and are a stage 4. You could still have 20 good years. Strator's story about his dad's surgery is a great point here. I would pursue this further. Good luck
frijole
I went to the websight---- medicare.gov -- and went thru the steps to find out if my drugs would be cover (it is not for the weak of heart, I tell you -- plan to use up some time). Had to borrow a medicare ID number and eligibility date to do so. You type in your zip code and it gives all the plans available in your region - there are 55 here in Texas. I followed the steps and finally got to step 4 - Medication and pharmacy selection. The program allows you to type in your meds, and compare plans. I typed in the Pegasys, Ribavivin, Neupogen, and Procrit and it gave me the expected cost per year. I didn't check out all the options, but the estimated annual cost ranged from $5716 on up.
The point is, these drugs appear to be on the forumlary list. That means they are in the top 100 drugs prescribed for people over 65. So why, then should you be excluded becuse you have depression and are a stage 4. You could still have 20 good years. Strator's story about his dad's surgery is a great point here. I would pursue this further. Good luck
frijole
You know I believe it's mostly the depression that has discluded them from treatment - I know if I had had any history of depression my doctor would NOT have treated me.
With the 1/3 number of people being GREATLY affected by the Interferon (ie: suicidal etc.) he felt if I had a history it would take me off the treatment list COMPLETELY.
Maybe that is why and nothing else?
I'd continue to fight if I was you - as long as you are on appropriate meds BEFORE you start treatment you might do well!
Keep up the good fight - dont even let them tell you NO..that just means you have to spend time looking for a way around them is all.
With the 1/3 number of people being GREATLY affected by the Interferon (ie: suicidal etc.) he felt if I had a history it would take me off the treatment list COMPLETELY.
Maybe that is why and nothing else?
I'd continue to fight if I was you - as long as you are on appropriate meds BEFORE you start treatment you might do well!
Keep up the good fight - dont even let them tell you NO..that just means you have to spend time looking for a way around them is all.
What a bucket of worms this whole medicare part D is. You are right on the out of pocket but there are a lot of ifs
The out of pocket works like this:
Dedcutible $250
25% of next $2000 500
The "donut hole" (no coverage
for next $2500
Total 3600
After the "donut hole" you pay 5% of total rx cost, or $2 per generic. The $3600 also does not count the premium of $35 per month - another $420.
I think the issue becomes - is the medicine that you need on the formulary list? If it is not, big trouble. It is not covered at all. Also, I understand the cheap stuff is not on the list like old antibiotics (although I don't have full understanding there)so maybe you are out of pocket there too (not sure)
The best thing to do to help your friend is to go to medicare.gov and work thru the screens like I mentioned above.
People who don't take a lot of rx's will have a tendancy to not sign up. Same with people who get there rx thru the VA like my father-in-law. Problem is if you don't sign up, you are penalized later if you end up needing more rx and want to sign up then. This is what the speaker said about that -- In Texas there is a plan available for $10 a month (you find this info on the websight). He suggests you lock into the cheapest plan just so you have something. You can change plans once a year.
Can-do -- this gets so intense. You can reach me at my screen name at aoldotcom and if you want I can send you some stuff.
The out of pocket works like this:
Dedcutible $250
25% of next $2000 500
The "donut hole" (no coverage
for next $2500
Total 3600
After the "donut hole" you pay 5% of total rx cost, or $2 per generic. The $3600 also does not count the premium of $35 per month - another $420.
I think the issue becomes - is the medicine that you need on the formulary list? If it is not, big trouble. It is not covered at all. Also, I understand the cheap stuff is not on the list like old antibiotics (although I don't have full understanding there)so maybe you are out of pocket there too (not sure)
The best thing to do to help your friend is to go to medicare.gov and work thru the screens like I mentioned above.
People who don't take a lot of rx's will have a tendancy to not sign up. Same with people who get there rx thru the VA like my father-in-law. Problem is if you don't sign up, you are penalized later if you end up needing more rx and want to sign up then. This is what the speaker said about that -- In Texas there is a plan available for $10 a month (you find this info on the websight). He suggests you lock into the cheapest plan just so you have something. You can change plans once a year.
Can-do -- this gets so intense. You can reach me at my screen name at aoldotcom and if you want I can send you some stuff.
Hows friole doing today? Saw your post on the new medicare part D program. Been helping a friend thats trying to fiqure out this hole mess. My question is, I was on the understanding after we talked to medicare that there is a 3,600 dollar out of pocket limit per year per person. Maybe you could help me on that? This person is elderly and has large meds drugs. Thanks and take care.
I'm a Kaiser Permanente No Calif patient. Kaiser does not perform liver TPX instead refers patients to centers that do. Kaiser does not make the determination who or who can't get TPX, the centers do. Your case will be sent by your GI to Kaiser's Referral Board. Did your GI say he/she would do this for you? If the RB accepts you you will be referred to the appropriate TPX center closest to your residence for patient evaluation. In No Calif its UCSF, So Calif its UCLA.
If Kaiser's RB turned you down, you can appeal with patient advocate office either online or go the administrative office of your Kaiser Hospital and file to have your case heard in your presence.
If Kaiser's RB turned you down, you can appeal with patient advocate office either online or go the administrative office of your Kaiser Hospital and file to have your case heard in your presence.
Thanks to all of you who took the time.
I am geno 1b and I know that doesn't make me a v good prospect for the winner's circle. I am wondering if the "depression" that I have been treated for these past eleven years was not in fact a result of the HCV? Does anyone have any first hand knowledge regarding silver-coloidal suppliments? If I am not going to get tx I guess I will start looking for straws.
I am geno 1b and I know that doesn't make me a v good prospect for the winner's circle. I am wondering if the "depression" that I have been treated for these past eleven years was not in fact a result of the HCV? Does anyone have any first hand knowledge regarding silver-coloidal suppliments? If I am not going to get tx I guess I will start looking for straws.
OH no man silver-coloidal suppliments, no way. besides the harm it might do it could cause your skin to turn gray. Talk to your doctor about a good diet, any vitamins, maybe milk thilsle? Just make sure you get any advice from your doctor before you take anything.
You are probably right. It is probably the depression rather than the age that is the problem. I wasn't aware that it could become such a major obstacle to treat
kath
kath
Here the link for dr. Cecil Bennet
http://www.hepatitisdoctor.com/
On the left side of his site click on cirrohosis. Read what he has to say and youll realise theres still alot of hope.
Again take care and best of luck
http://www.hepatitisdoctor.com/
On the left side of his site click on cirrohosis. Read what he has to say and youll realise theres still alot of hope.
Again take care and best of luck
Curious, What geno type are you? and besides the depression hows you overall health? Any previous heart trouble? or any serious heart problems run in your family? Have high blood pressure? As any history with these would also be a red flag. That said see family doctor and have him give you a referal to a hepatologist. If yout overall health is in good shape and can take AD's for your depression and have no current history of alcohol problems then you might have a good shot at trying treatment. I know of one person here thats on week 4 i believe thats 65.
I take it your on medicare? Which would help cover most of the Doctors bills, heart test, ect. And will cover all of your lab cost. Theres a comentment to care program that will cover your drug costs.
But even if your not able to tx. That doesn't been your going to die or get real sick soon. Lots of people live many years that have cirrohosis. You could very easy die of old age, so try not to stress yourself to much. Heck im only 48 and have been stage 4 for at least 3 years, on tx. Geno 1. If tx. don't work for me im not goona give up. My hepatologist told me he bets i'll still be around for many years driving people crazy.
Best of luck to ya, come here often with any questions and Don't give up.
I take it your on medicare? Which would help cover most of the Doctors bills, heart test, ect. And will cover all of your lab cost. Theres a comentment to care program that will cover your drug costs.
But even if your not able to tx. That doesn't been your going to die or get real sick soon. Lots of people live many years that have cirrohosis. You could very easy die of old age, so try not to stress yourself to much. Heck im only 48 and have been stage 4 for at least 3 years, on tx. Geno 1. If tx. don't work for me im not goona give up. My hepatologist told me he bets i'll still be around for many years driving people crazy.
Best of luck to ya, come here often with any questions and Don't give up.
Welcome to the forum. I am sorry Kaiser is giving you the no go. I don't know anything about them. Perhaps you can consult with a GI or hepatologist on your own, and pursue getting the medicines through the drug companies who have programs for those that qualify. Given your inability to concentrate and the stage of your liver, it seems to me that treatment would help. I wish you luck and i don't think you are too old to treat.
It sounds to me like Kaiser has done a cost/risk benefit analysis on you and doesn't lke the odds. Kaiser has a reputation for being tough. I would demand a second opinion. Lots of people with pre-existing depression successfully treat. I had been on anti-depressants for decades off and on and am treating at age 54 with the same dosage of anti-depressant I started with. Everyone is different, and certainly you should be closely monitored but that doesn't rule out treatment. Neither does your age. While I don't think there is anyone posting on this board now who is your age, it's not unheard of. Hopefully some other folks will chime in.
Even if treatment doesn't work for you it can buy you time. Treatment slows down the progression of the disease and in some cases has been known to reverse the damage. Yes--the odds are not in your favour, but hell--it beats the alternative right? If I were you I would push back hard and make them explain to you whether they are denying you treatment or calling you a poor candidate because those are two different things, and you should have control over the final decision if the doc is just not recommending treatment rather then denying it. Nobody cares about your body as much as you do! Good luck. Keep us posted.
Even if treatment doesn't work for you it can buy you time. Treatment slows down the progression of the disease and in some cases has been known to reverse the damage. Yes--the odds are not in your favour, but hell--it beats the alternative right? If I were you I would push back hard and make them explain to you whether they are denying you treatment or calling you a poor candidate because those are two different things, and you should have control over the final decision if the doc is just not recommending treatment rather then denying it. Nobody cares about your body as much as you do! Good luck. Keep us posted.
Have you exhausted ALL of your options?
I'm 48 years old, male, good health, exercise daily, eat right. My HCV is genotype 1b which is the hardest to cure.
I went on treatment last year for about 35 weeks. My viral load started around 3 million and dropped to 15,000 but started to go up and treatment stopped, it didn't work for me.
Luckily there is almost no scarring or inflammation of my liver and my present doc says that I have time.
Before I knew that time was in my favor, I considered going to Dr. Cecil Bennet in Louisville, KY. He is not one of the researchy kind of docs but is aggressive with traditional stuff like Interferon....but he's getting great results.
What's your insurance situation? Again we are fortunate to have full coverage.
CECIL BENNET MD. 4130 DUTCHMANS LN, (502) 894-9950. LOUISVILLE, KY 40207
Also have you checked into the programs at the companies Schering and also Roche? They have programs for people who don't have the means for treatment.
Does anybody else have any suggestions for Que5567?
There's hope...look for it. God Belss.
Mike
I'm 48 years old, male, good health, exercise daily, eat right. My HCV is genotype 1b which is the hardest to cure.
I went on treatment last year for about 35 weeks. My viral load started around 3 million and dropped to 15,000 but started to go up and treatment stopped, it didn't work for me.
Luckily there is almost no scarring or inflammation of my liver and my present doc says that I have time.
Before I knew that time was in my favor, I considered going to Dr. Cecil Bennet in Louisville, KY. He is not one of the researchy kind of docs but is aggressive with traditional stuff like Interferon....but he's getting great results.
What's your insurance situation? Again we are fortunate to have full coverage.
CECIL BENNET MD. 4130 DUTCHMANS LN, (502) 894-9950. LOUISVILLE, KY 40207
Also have you checked into the programs at the companies Schering and also Roche? They have programs for people who don't have the means for treatment.
Does anybody else have any suggestions for Que5567?
There's hope...look for it. God Belss.
Mike
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