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How do I join this forum?
I see a box to click on the post a question page about joining this forum, but it seems one has to post a question to submit the checked box. The posts on this forum have been more helpful than anything that I have found so far on Hep C and have given me the information that I need to move forward to the next step, which has to be finding another doctor who says more than "Come back when you are ready for treatment or in six months." It is a little premature, in my opinion, to pressure me to be treated when I don't even know what stage I am at. So thanks for all your help so far!
I have no idea why the Doctors order the ultrasound first, although, maybe they are looking for signs of liver cancer?
Last year, I had an ultrasound, and mine came back perfectly normal. My husbands came back as "fatty-liver".
Then, I tried to take part in a Research Study, for Hep C cure, and they ordered a blood test, called a "Fibro-Test", which told me I had stage 4 cirrhosis. But I didn't feel that sick. So then, I had a biopsy, and it had me at stage 2 fibrosis. I also had lowered platelets, so went into treatment asap, before the platelets got lower, as the triple tx causes low platelts as a side effect, as well.
Go get the biopsy, and skip the 2nd ultra-sounds...my Primary Care Physcian knew very little about Hep C, so I had to go to a Specialist, who specifically treats Hep C, to get the answers~
Last year, I had an ultrasound, and mine came back perfectly normal. My husbands came back as "fatty-liver".
Then, I tried to take part in a Research Study, for Hep C cure, and they ordered a blood test, called a "Fibro-Test", which told me I had stage 4 cirrhosis. But I didn't feel that sick. So then, I had a biopsy, and it had me at stage 2 fibrosis. I also had lowered platelets, so went into treatment asap, before the platelets got lower, as the triple tx causes low platelts as a side effect, as well.
Go get the biopsy, and skip the 2nd ultra-sounds...my Primary Care Physcian knew very little about Hep C, so I had to go to a Specialist, who specifically treats Hep C, to get the answers~
Will covered the ultrasound question better than I did. I was typing and did not see his post.
My doctor ordered an ultrasound too. I had that before I had the biopsy.
Here is a 2 minute video that tells you more about what they can see on the ultrasound.
One has to keep in mind, that an ultrasound won't show the lower stages of fibrosis, like mine, which was Stage 2. My ultrasound was perfectly normal. The ultrasound will show more advanced fibrosis/cirrhosis as well as all of the other things mentioned in the video.
When you say you won't have private insurance does that mean retirement health insurance or any extra insurance at all. You do not have to answer that, it is just a question for you. The reason I ask is that a person can get a supplemental medical insurance policy in addition to Medicare Parts A and B and that supplemental insurance policy can cover what Medicare does not cover. That would be in addition to the Medication coverage (so most people if they are well coverd actually have Medicare A and B, a medication insurance policy, and a medi-gap insurance policy that picks up all or part of what Medicare does not pay). There are many medi-gap policies and the premiums vary according to the coverage and the deductible.
Here is a 2 minute video that tells you more about what they can see on the ultrasound.
One has to keep in mind, that an ultrasound won't show the lower stages of fibrosis, like mine, which was Stage 2. My ultrasound was perfectly normal. The ultrasound will show more advanced fibrosis/cirrhosis as well as all of the other things mentioned in the video.
When you say you won't have private insurance does that mean retirement health insurance or any extra insurance at all. You do not have to answer that, it is just a question for you. The reason I ask is that a person can get a supplemental medical insurance policy in addition to Medicare Parts A and B and that supplemental insurance policy can cover what Medicare does not cover. That would be in addition to the Medication coverage (so most people if they are well coverd actually have Medicare A and B, a medication insurance policy, and a medi-gap insurance policy that picks up all or part of what Medicare does not pay). There are many medi-gap policies and the premiums vary according to the coverage and the deductible.
Ultrasound is not a method used for ascertaining amount of liver damage.
It is relatively accurate and useful in looking for nodular formations on the liver ,lesions (either benign or malignant),size of portal vein and an enlarged spleen(which can be evidence among other things of cirrhosis)
The only proven methods of gauging amount of liver damage(fibrosis) is by biopsy or sometimes less invasive methods are utilized,being Fibroscan and/or fibrosure blood test.
best..
Will
It is relatively accurate and useful in looking for nodular formations on the liver ,lesions (either benign or malignant),size of portal vein and an enlarged spleen(which can be evidence among other things of cirrhosis)
The only proven methods of gauging amount of liver damage(fibrosis) is by biopsy or sometimes less invasive methods are utilized,being Fibroscan and/or fibrosure blood test.
best..
Will
I do have something I am questioning. Everyone says that good results from ultrasounds are not proof of no liver damage. If that is true, why do doctors keep ordering them? This doctor I plan to ditch ordered one in November and then gave me an order for another one before I see her again, which could be in two or five months, according to whether I want to see her in two months and begin treatment or whether I don't want to begin treatment, in which case, don't make an appointment for five months, I don't mind getting what needs to be done done, but I'm not sure another ultra is necessary; a biopsy seems to be what is called for.
Thank goodness I have a financial advisor who can help me wade through this Medicare stuff. I will not have any private insurance to supplement so must carefully consider what to do.
Thank goodness I have a financial advisor who can help me wade through this Medicare stuff. I will not have any private insurance to supplement so must carefully consider what to do.
Since you are nearing Medicare age, it would be wise to look into it soon. You need to sign up for it about 3 months before you expect to start using it (3 months before you turn 65). I am on Medicare parts A and B (A - hospital, B - office visits, outpatient). You get Medicare Part A free but you have to pay for Part B (about $100 a month). You need Part B, though, or the outpatient bills and office visits won't be covered. Medicare covers 80% of the bill (if your provider agrees to the rate Medicare pays). (They cannot just say they won't accept your payment. They either accept what Medicare pays or they don't.) Then you need a Part D for medications. That plan you will choose and there are many to choose from. You need it though. It is not wise to skimp on the medication part because you never know when you may get something that requires really expensive drugs (like Hep C or cancer).
I also have another health insurance policy. It is through the retirement system from my old job. As a teacher, you may have an option to continue with your current plan. The premium gets cheaper once you are on Medicare. I would definitely recommend getting a second insurance plan. Medicare pays only 80%. You have to cover the other 20%. Not bad if it costs $10 or even $100, but when the bill is $100,000 to $500,000, your 20% co-pay is $20,000 or $100,000 respectively. Most people cannot afford that. So it is better to have the second private or retirement insurance. Some retirement health ins. policies have their own drug/medication part and it may be a better deal than shopping around. My retirement health ins. has medication coverage and it is much better than any I could get elsewhere.
Anyway, Medicare can be a bit daunting when you first start researching it. I went to a couple of presentations that were given by social services or something like that. They explained everything. Otherwise, a lot of it is Greek, especially when you start looking into the options of HMO or palin Medicare and the drug plan options.
You can ask the Medicare office to send information to you They have a website.
http://www.medicare.gov/default.aspx?AspxAutoDetectCookieSupport=1
I also have another health insurance policy. It is through the retirement system from my old job. As a teacher, you may have an option to continue with your current plan. The premium gets cheaper once you are on Medicare. I would definitely recommend getting a second insurance plan. Medicare pays only 80%. You have to cover the other 20%. Not bad if it costs $10 or even $100, but when the bill is $100,000 to $500,000, your 20% co-pay is $20,000 or $100,000 respectively. Most people cannot afford that. So it is better to have the second private or retirement insurance. Some retirement health ins. policies have their own drug/medication part and it may be a better deal than shopping around. My retirement health ins. has medication coverage and it is much better than any I could get elsewhere.
Anyway, Medicare can be a bit daunting when you first start researching it. I went to a couple of presentations that were given by social services or something like that. They explained everything. Otherwise, a lot of it is Greek, especially when you start looking into the options of HMO or palin Medicare and the drug plan options.
You can ask the Medicare office to send information to you They have a website.
http://www.medicare.gov/default.aspx?AspxAutoDetectCookieSupport=1
Good for you for being proactive and getting yourself prepared and choosing the best doctor to guide you through tx. Many have gone into this while blindly trusting their doctor, which depending on their experience, may or may not work out so well. Don't get too overwhelmed with reading about the side effects since there is some bias to reporting the negative effects, and you might be one with few or little side effects.
Regarding the membership card, I'm running a special this month if you sign with me. Pay for a one day admission and you get the whole year for free - kinda like Busch Gardens --- lots of rollercoaster rides, a zoo with many wild animals, educational programs, dietary recommendations, etc. You might even qualify after several months of tx as a zombie for Howl-O-Scream. You have plenty of time to decide, no pressure........ tap, tap, tap :-))
Regarding the membership card, I'm running a special this month if you sign with me. Pay for a one day admission and you get the whole year for free - kinda like Busch Gardens --- lots of rollercoaster rides, a zoo with many wild animals, educational programs, dietary recommendations, etc. You might even qualify after several months of tx as a zombie for Howl-O-Scream. You have plenty of time to decide, no pressure........ tap, tap, tap :-))
In the beginning it seemed more advantageous compared to now. It seems like fewer doctors accept Medicare these days. On the other hand, lots of qualified docs still do. We are happy the way things are working out with Medicare and his supplemental insurance. Based on the huge check I just wrote to the United States Treasury I can tell you that continuing to work full time and making decent money while on SS kind be somewhat of an inconvenience. . .
Anyway, listen: this is all new and lots of information to digest. Plus you still need more information until you can make any kind of meaningful decision. Just know that we are here and there are lots of folks on here who can translate test results, interpret lab results as well as explain the many types of options that could be available to you under the circumstances. So, just be sure to check in.
Anyway, listen: this is all new and lots of information to digest. Plus you still need more information until you can make any kind of meaningful decision. Just know that we are here and there are lots of folks on here who can translate test results, interpret lab results as well as explain the many types of options that could be available to you under the circumstances. So, just be sure to check in.
Fellow Texans! I am excited to know you are out there. The doctor I am second opinioning is from UTMB so I feel pretty confident. He apparently does liver transplants from what I read on his HealthGrades profile, so I would think he knows what he is doing. Baylor would be a good choice, too--I just have this thing about driving on I45 into Houston, and I can see the UTMB guy in Friendswood or Galveston. I was looking up some clinical trials running out of Baylor, but they involved interferon, and I would like to avoid interferon if at all possible. Have read (and am still reading) about some bad and long-lasting side effects. I would really like to just wake up and have this all go away, but wouldn't we all?
I can't sign up for Medicare until I turn 65, which will be January, but I will probably get information before then. Until then, I am still under my employer's plan and will continue with COBRA until I am on Medicare. I hope good doctors aren't refusing patients who are on Medicare. I already had Kelsey-Sebring refuse Aetna (my private policy) today.
I will be looking for the membership card. Are there any perks?
I can't sign up for Medicare until I turn 65, which will be January, but I will probably get information before then. Until then, I am still under my employer's plan and will continue with COBRA until I am on Medicare. I hope good doctors aren't refusing patients who are on Medicare. I already had Kelsey-Sebring refuse Aetna (my private policy) today.
I will be looking for the membership card. Are there any perks?
Welcome to the forum from a fellow Texan. Doesn't Enrollment in Medicare Part B begin a couple of months before your 65th birthday? And Part A about 6 months retroactively? In fact you should be receiving an Initial Enrollment Package in a couple of months. This all is not quite the same as your full Social Security retirement benefits which often kick in when you are 67. A lot depends on the month you were born. Anyway, I only know how things worked out for my husband so I don't want to mislead you though I would not rule this out as a resource.
Glad you found a GI/Hepa. Hopefully it will be one that has experience with treating HCV or is studious enough to learn.
* Either way, quitting drinking now may not be such a bad idea. Getting (and staying) as healthy and active as you can prior to treating makes a huge difference.
Glad you found a GI/Hepa. Hopefully it will be one that has experience with treating HCV or is studious enough to learn.
* Either way, quitting drinking now may not be such a bad idea. Getting (and staying) as healthy and active as you can prior to treating makes a huge difference.
Welcome to the forum and you have gotten some good advise here.
For second opinions, Baylor College of Medicine has wonderfull, knowledgable hepatologists. I have been and am their patient and would recommend any of them in this group.
I'm in the same area with you so going to the med center at Baylor would be my top priority if I were you.
Ill send you your membership card ;). LOL
For second opinions, Baylor College of Medicine has wonderfull, knowledgable hepatologists. I have been and am their patient and would recommend any of them in this group.
I'm in the same area with you so going to the med center at Baylor would be my top priority if I were you.
Ill send you your membership card ;). LOL
Thanks for all your comments. I made an appointment with another doctor today--this one is a gastroenterologist and a hepatologist. Can't get in until July, but that is OK. I hope then I can get the biopsy done and make a better decision. This doctor is Italian, and the best doctor I ever had (in NYC) was Italian, so maybe it's a good omen!
So whatever the start-up fee for joining this forum, I think joining is worth it! When do I get my membership card?
So whatever the start-up fee for joining this forum, I think joining is worth it! When do I get my membership card?
You got some great advice above ,so I won't expand on that ,however as far as ..
How do I join this forum? I believe you need to send "can-do -man" your start up fee...:)
Good luck..
Will
How do I join this forum? I believe you need to send "can-do -man" your start up fee...:)
Good luck..
Will
The ultrasound may not show much unless you have cirrhosis. Mine was normal. Not a thing on it. But I was Grade 2, Stage 2 (inflammation/fibrosis). So I, too, think you need a biopsy so you know where you stand. You will be able to make a much better informed decision after having a biopsy.
I understand your concerns and financial status is definitely a concern. You may be able to work during treatment, many do, but you won't know that until you start treatment. Having all of your ducks in a row before treatment begins is really very important.
I do understand your not wanting to do triple treatment. It is no picnic. Some do fine and have few side effects. Others have more side effects. It helps if you have a doctor who is willing to treat the side effects when they appear. Had mine addressed my side effects (nausea and rash/itching) when they appeared, I would have had a much easier treatment. As it was, they took weeks and weeks to do anything and then only at my insistance.
The length of treatment depends on your response to the meds at 4 weeks after starting treatment. If you have no detectable virus at 4 weeks, you do 24 weeks total (Incivek). If you have detectable virus at 4 weeks you do 48 weeks total (Incivek). Victrelis has different but similar rules. I am doing 48 weeks because I had <43 but detectable virus at week 4 (Undetected at week 8).
Hopefully you will have minimal liver damage. That will give you more options of when to treat.
Best of luck.
I understand your concerns and financial status is definitely a concern. You may be able to work during treatment, many do, but you won't know that until you start treatment. Having all of your ducks in a row before treatment begins is really very important.
I do understand your not wanting to do triple treatment. It is no picnic. Some do fine and have few side effects. Others have more side effects. It helps if you have a doctor who is willing to treat the side effects when they appear. Had mine addressed my side effects (nausea and rash/itching) when they appeared, I would have had a much easier treatment. As it was, they took weeks and weeks to do anything and then only at my insistance.
The length of treatment depends on your response to the meds at 4 weeks after starting treatment. If you have no detectable virus at 4 weeks, you do 24 weeks total (Incivek). If you have detectable virus at 4 weeks you do 48 weeks total (Incivek). Victrelis has different but similar rules. I am doing 48 weeks because I had <43 but detectable virus at week 4 (Undetected at week 8).
Hopefully you will have minimal liver damage. That will give you more options of when to treat.
Best of luck.
How you got hep C is irrelevant. Do you ask how you got the flu ? No, take care of it.
Your viral load has nothing to do with how much or little damage your liver has sustained.
This is why we often suggest a biopsy.
My viral load was lower than yours when I was diagnosed with hepC, and decompensated cirrhosis
Unlike you, I had no drinking problem yet I had ESLD. I was active, ate well and believed I was healthy.
I'm not trying to scare you but the truth is just as I did not know my liver was failing, you do not the health of your liver.
You can tell your doctor honestly that you cannot decide whether or not you want to do treatment now or wait, until you know the health of your liver.
This is reasonable.
Your viral load has nothing to do with how much or little damage your liver has sustained.
This is why we often suggest a biopsy.
My viral load was lower than yours when I was diagnosed with hepC, and decompensated cirrhosis
Unlike you, I had no drinking problem yet I had ESLD. I was active, ate well and believed I was healthy.
I'm not trying to scare you but the truth is just as I did not know my liver was failing, you do not the health of your liver.
You can tell your doctor honestly that you cannot decide whether or not you want to do treatment now or wait, until you know the health of your liver.
This is reasonable.
I do not know how long I have had Hep C as, other than piercings, the only suspicious thing was blood transfusions 40+ years ago. My viral load is 950K. Ultrasound 4 months ago normal. Genotype 1b. I think you confirm that I need a biopsy done before I decide on treatment. My present doctor will not do a biopsy until I have been totally off alcohol for 3 months, which will be the end of June, but she seems to be pushing me to say that I want treatment before I have had one. I have read about the triple tx and really would prefer to avoid it, especially since I don't have the funds to comfortably retire without some kind of job, part-time perhaps, but something. I am retiring from teaching in a couple of months, but I can't even think about trying to get a new job and going on treatment for 48 weeks or whatever. It does not seem critical to start treatment at this moment. I think I have some time. I plan to call a second-opinion doctor today.
I think you must have joined somehow because I do not think you can post wothout joining (I could be wrong about that).
Welcome to the forum.
It sounds like you do need a new doctor, preferably a hepatologist or a gastroenterologist who is familiar with treating Hep C.
I am assuming you are definitely Hep C positive since the doc is talking about treating. Do you know your genotype ? Have you had a viral load done? Have you had an ultrasound done? Have you had a biopsy done? The biopsy will tell you what stage you are in.
Once your biopsy is done you can then discuss treatment with your doctor.
There are a couple of things to keep in mind. I do not know how long you ave had Hep C. You are 64 years old. Fibrosis tends to speed up as a person ages. It is easier to treat people (and more successful) if they are treated while in the earlier stages of fibrosis as opposed to treating in the later stages of fibrosis. In addition, the older you get, the possibility of developing other chronic diseases increases (heart, cardiovascular, immune disorders, cancer, etc.). Having one or more of those diseases may complicate treatment or may probibit you from treating.
If you are Genotype 1, there are currently 2 triple med treatments available. (Incivek, Interferon, Ribavirin) or (Victrelis, Interferon, Ribavirin). Neither of them are a walk in the park, but they are doable for most people.
In 3-5 years there MAY be some other interferon free drug regimens available but no one knows for sure when they will be available. The decision to treat now or wait for easier treatments (all oral) depends on your fibrosis stage, your life situation, your insurance, your support system, etc. It is a very personal decision. But do keep in mind your age.
I am 66 (65 when I started treatment). I am on triple meds with Incivek, Interferon, and Ribavirin. It is no walk in the park, but I am doing it and I hope to attain a sustained viral response (and cure). I was diagnosed in July 2011. My viral load was 14.4 million and my fibrosis was at Stage 2. I elected to treat as soon as possible in order to get rid of the virus. Personally, I do not want to take the chance of waiting any longer.
Keep us posted and post any questions you have. This forum ios a great place for support and answers from some very knowledgeable people.
Welcome to the forum.
It sounds like you do need a new doctor, preferably a hepatologist or a gastroenterologist who is familiar with treating Hep C.
I am assuming you are definitely Hep C positive since the doc is talking about treating. Do you know your genotype ? Have you had a viral load done? Have you had an ultrasound done? Have you had a biopsy done? The biopsy will tell you what stage you are in.
Once your biopsy is done you can then discuss treatment with your doctor.
There are a couple of things to keep in mind. I do not know how long you ave had Hep C. You are 64 years old. Fibrosis tends to speed up as a person ages. It is easier to treat people (and more successful) if they are treated while in the earlier stages of fibrosis as opposed to treating in the later stages of fibrosis. In addition, the older you get, the possibility of developing other chronic diseases increases (heart, cardiovascular, immune disorders, cancer, etc.). Having one or more of those diseases may complicate treatment or may probibit you from treating.
If you are Genotype 1, there are currently 2 triple med treatments available. (Incivek, Interferon, Ribavirin) or (Victrelis, Interferon, Ribavirin). Neither of them are a walk in the park, but they are doable for most people.
In 3-5 years there MAY be some other interferon free drug regimens available but no one knows for sure when they will be available. The decision to treat now or wait for easier treatments (all oral) depends on your fibrosis stage, your life situation, your insurance, your support system, etc. It is a very personal decision. But do keep in mind your age.
I am 66 (65 when I started treatment). I am on triple meds with Incivek, Interferon, and Ribavirin. It is no walk in the park, but I am doing it and I hope to attain a sustained viral response (and cure). I was diagnosed in July 2011. My viral load was 14.4 million and my fibrosis was at Stage 2. I elected to treat as soon as possible in order to get rid of the virus. Personally, I do not want to take the chance of waiting any longer.
Keep us posted and post any questions you have. This forum ios a great place for support and answers from some very knowledgeable people.
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