Aa
Please help me better understand
I was diagnosed with Hep C approx 11 years ago. Did the Interferon/Rib treatment. Unfortunately, I didn't only relapse with Hep C, but I went back to drinking. For another 6 years, i drank pretty heavy. A case of beer, few shots on the weekends.
In March of 2012, I suffered esophageal varices. Was very very lethargic for a whole weekend and my stools were horrendous, black and like thick tar.
I went to a local hospital, in which they claim it was from the varices bursting and I'm now on Pantaprozole, Nadolol, Januvia (While in there, they diagnosed me with diabetes).
My hepatologist, Dr. Rothstein in Philadelphia, wants to put me on 24 week treatments. I forget the name. Right now my platelet count is 63. I go for another endoscopy tomorrow, to check the varices.
I also was diagnosed with cirrhosis back in March of 12'. I have been sober since then. No alcohol intake what so ever. I feel though, as if they're not giving me enough information. Like: What stage my Hep C is in, or what stage the cirrhosis is in. Can someone please give me some advice, on what questions to ask my hepatologist. Everytime i go, they do a routine physical, and charge me $40 and give me no information. Thanks very much!!!
In March of 2012, I suffered esophageal varices. Was very very lethargic for a whole weekend and my stools were horrendous, black and like thick tar.
I went to a local hospital, in which they claim it was from the varices bursting and I'm now on Pantaprozole, Nadolol, Januvia (While in there, they diagnosed me with diabetes).
My hepatologist, Dr. Rothstein in Philadelphia, wants to put me on 24 week treatments. I forget the name. Right now my platelet count is 63. I go for another endoscopy tomorrow, to check the varices.
I also was diagnosed with cirrhosis back in March of 12'. I have been sober since then. No alcohol intake what so ever. I feel though, as if they're not giving me enough information. Like: What stage my Hep C is in, or what stage the cirrhosis is in. Can someone please give me some advice, on what questions to ask my hepatologist. Everytime i go, they do a routine physical, and charge me $40 and give me no information. Thanks very much!!!
Your viral load is 5.68 million. The cirrosis is not good but that's prob why yku have to take the tx for 24 weeks. Your liver functions look not too bad tho, mine was 98 and 109 when I started tx. The tx is called Harvoni and a great drug. Not like the one 10 yrs ago...or even 2 yrs ago. A few small side effects but nothing that cant be handled.
Good luck.
Good luck.
Thanks everyone! The Harvoni was approved and i'm waiting for them to ship it to my Dr. I do have a liver doctor, who also does transplants. I see Dr. Rothstein at the Hanneman University Hospital in Philadelphia. Thanks again for all of your help. This sure is a little scary but I'm trying to keep a positive outlook on everything.
SLady: Oops, sorry I missed listing 2c. Mea culpa!
Shovel: I see I forgot to imclude the liver friendly diet info. Sorry! Here it is.
That website for the liver friendly diet I mentioned is:
http://www.loveyourliver.com.au/loving-your-liver/diet.
Hope this helps!
Oh, forgot to say you have a right to copies of your records.,,Ask the nurse to have copies of all your blood work ready for you and go pick them up. This helps you to be specific when asking for info, as you can show specific scores, if needed. Also, you will be able to compare Lab results from draw to draw as you go through tx.
Harvoni is a good choice of tx for Gt 1a. Since you were treated and relapsed, you will probably be given Ribavirin with the Harvoni or tx for 24'weeks. Either is doable. SVR is near! Hang in there. Pat
Shovel: I see I forgot to imclude the liver friendly diet info. Sorry! Here it is.
That website for the liver friendly diet I mentioned is:
http://www.loveyourliver.com.au/loving-your-liver/diet.
Hope this helps!
Oh, forgot to say you have a right to copies of your records.,,Ask the nurse to have copies of all your blood work ready for you and go pick them up. This helps you to be specific when asking for info, as you can show specific scores, if needed. Also, you will be able to compare Lab results from draw to draw as you go through tx.
Harvoni is a good choice of tx for Gt 1a. Since you were treated and relapsed, you will probably be given Ribavirin with the Harvoni or tx for 24'weeks. Either is doable. SVR is near! Hang in there. Pat
You have almost 6 million Viral load. That should be enough to get an approval and varices definitely gets a treatment approval. Your doc needs to determine the stage of your liver disease. Yep you had a bleed out. First comes the confusion and the black tar like stools. That's when you go to ER. Geno 1A like most of us. Do you have Insurance? You need a fibroscan to get the stage of your liver damage. I'd think you'd get approved. Bleed-outs are scary. You can do Solvadi/Olysio or Harvoni.
You are on your way to being cured. My concern is that you not return to drinking and you eat a healthy diet. Can they set you up with a nutritionist?
You are on your way to being cured. My concern is that you not return to drinking and you eat a healthy diet. Can they set you up with a nutritionist?
Welcome to the forum! My best advice is this...if you are not getting what you need from your doctor, go to someone else. Also, consider seeing a hepatologist, a liver specialist. Your doctor may already be one but point being, your doctor is your best advocate. If you are not getting what you need, go elsewhere. Best of luck and health to you!!
Hey there! Welcome to the forum. I am very happy for you. I hope you will keep in touch, everyone will help you during your treatment = tx and beyond.
Every time someone gets approved for tx an angel gets her wings :)
Well..that's how my story goes :)
Dee
Every time someone gets approved for tx an angel gets her wings :)
Well..that's how my story goes :)
Dee
Good News Shovel.
You've initiated the beginning of a new life.
Everyone's stepped up and given you great advice. Amazing gang!
Bravo
.....Kim
You've initiated the beginning of a new life.
Everyone's stepped up and given you great advice. Amazing gang!
Bravo
.....Kim
I cannot thank you all enough. I did speak with my Dr's nurse today. She helped me better understand a little better as well. My Dr is going to see me next Friday. Dr. Rothstein at Hanneman University, in Philadelphia.
My Geno type is 1A
And they're submitting everything to my insurance tomorrow for HARVONI
My Geno type is 1A
And they're submitting everything to my insurance tomorrow for HARVONI
Yes, the HVC RNA PCR (IU) is, indeed your Viral Load. It may look high to you, but there are many that are higher. Basically the VL (HVC RNA PCR) only tells you that you do have hepc. And, later, when you are on treatment, whether or not the treatment is working. By the way, even not on treatment (tx) that number can go up and down, so don't panic if it changes befor tx. The Viral Load test, if you have had the test, would actually say Viral Load.
DWBH and AWM have given you good advice. The questions that pooh posted will really help you talk with you Dr.
The reason AWM talked about Harvoni and Viekira Pack is that choice of meds is based on that Genotype (Gt Or gt). There is even a possibility that you will be given and older protocol - Sovaldi/Ribavirin - for 24 weeks, as it is still the best tx we have, at present for Gt 3, the one I either had, or have ( finished tx 12-1 & waiting for my Week12 EOT Lab work to confirm SVR or relapse. That sentence said I am waiting for a blood work up to be done 12 weeks after the date I took my last dose of meds (Wk12 End of Treatment). An updated alternate might be the Harvoni plus Ribavirin for either 12 or 24 weeks for that Gt.
The Genotypes are 1a, 1b, 2a, 3a, 4, 5, & 6. The numbers indicate different strains of the hepc virus and basically refer to the areas of the world where the originated and/or are most prevelant. You don't have to have been there. It is just more info that helps the Dr know what to prescribe because research and practival use in the 'real world' has demonstrated what works best with which.
Oh, I meant to say earlier congratulations on your 2 years sobrity!! a Good start in the right direction. I reach 21 years in Feb! That behavior will go a long way in helping your liver.
I also suggest that you start drinking a LOT of water, purified or distilled is best but filtered with a good filter is also good. And, if I don't forget, at the end of this, I will post the address (link?) to a good 'liver friendly diet' site. Eating liver friendly, cutting out sugars, salt, red meat as much as you can. Eating lots of fruits, veggies, fish (well cook, not raw or undercooked) poultry, eggs, nuts, 'good' fats (yogurt, cottage cheese, cream cheese, butter instead of margarine, avocados, etc, will be easier for your liver to process and help reduce irritants. You can start these before tx, even.
Sorry for the length - just wanted to give you some things so you can start feeling more comfortable. Even if you do have cirrhosis, tx can help and, when you reach SVR (Sustained Viral Response - cured in hepc Speak) can even reverse to some degree.
Again, welcome and hang in there! feel free to ask questions. We have many wonderfully helpful, caring, knowledgeable people here to help you.
Pat
DWBH and AWM have given you good advice. The questions that pooh posted will really help you talk with you Dr.
The reason AWM talked about Harvoni and Viekira Pack is that choice of meds is based on that Genotype (Gt Or gt). There is even a possibility that you will be given and older protocol - Sovaldi/Ribavirin - for 24 weeks, as it is still the best tx we have, at present for Gt 3, the one I either had, or have ( finished tx 12-1 & waiting for my Week12 EOT Lab work to confirm SVR or relapse. That sentence said I am waiting for a blood work up to be done 12 weeks after the date I took my last dose of meds (Wk12 End of Treatment). An updated alternate might be the Harvoni plus Ribavirin for either 12 or 24 weeks for that Gt.
The Genotypes are 1a, 1b, 2a, 3a, 4, 5, & 6. The numbers indicate different strains of the hepc virus and basically refer to the areas of the world where the originated and/or are most prevelant. You don't have to have been there. It is just more info that helps the Dr know what to prescribe because research and practival use in the 'real world' has demonstrated what works best with which.
Oh, I meant to say earlier congratulations on your 2 years sobrity!! a Good start in the right direction. I reach 21 years in Feb! That behavior will go a long way in helping your liver.
I also suggest that you start drinking a LOT of water, purified or distilled is best but filtered with a good filter is also good. And, if I don't forget, at the end of this, I will post the address (link?) to a good 'liver friendly diet' site. Eating liver friendly, cutting out sugars, salt, red meat as much as you can. Eating lots of fruits, veggies, fish (well cook, not raw or undercooked) poultry, eggs, nuts, 'good' fats (yogurt, cottage cheese, cream cheese, butter instead of margarine, avocados, etc, will be easier for your liver to process and help reduce irritants. You can start these before tx, even.
Sorry for the length - just wanted to give you some things so you can start feeling more comfortable. Even if you do have cirrhosis, tx can help and, when you reach SVR (Sustained Viral Response - cured in hepc Speak) can even reverse to some degree.
Again, welcome and hang in there! feel free to ask questions. We have many wonderfully helpful, caring, knowledgeable people here to help you.
Pat
This is from one of HectorSF posts. I will post it for you and others to see.
"Maximizing Your Medical Appointments"
Here are some tips on how to maximize the time spent with your care provider.
1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue. For information on this, see HCSP’s Factsheet Being an Effective Health Care Consumer: Your Medical History.
2. Before your medical appointment, write down your questions and prioritize them.
3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.
4. Make eye contact before speaking to your medical provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.
5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.
6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.
7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.
8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask her to clarify or simplify her words.
9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.
10. Take a friend, loved one or advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your
companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.
11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.
12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let her know. Sometimes these
concerns can be easily addressed.
13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.
14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near
what they imagined.
15. Ask the physician if there are resources or support groups she would recommend.
16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.
17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. This sets a standard that you are the manager of your health care. It also makes it easier to give copies to
other health practitioners.
18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf
---------------------------------------------------------------------------------
Some questions to ask your doctor...
Do I need to be vaccinated for hepatitis A and hepatitis B?
What is my genotype? What does my genotype mean?
Do I have liver damage? If so, how much liver damage is there?
What are my treatment options?
Is there one treatment you think is best for me?
Are there any clinical trials?
What are the benefits of each treatment option?
What are the potential risks of each treatment option?
How can I protect the people around me from hepatitis C?
Do I need to start treatment for hepatitis C now?
How will this treatment interact with my other medications?
How will you assess whether the treatment is working for me?
What should I do if I have side effects? How can I manage the side effects?
What are symptoms to pay attention to and look out for?
How likely is it that I will develop cirrhosis or liver cancer?
If I do not start treatment now, how often should my liver be monitored for liver damage?
How often should I see a liver specialist? Primary care physician?
"Maximizing Your Medical Appointments"
Here are some tips on how to maximize the time spent with your care provider.
1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue. For information on this, see HCSP’s Factsheet Being an Effective Health Care Consumer: Your Medical History.
2. Before your medical appointment, write down your questions and prioritize them.
3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.
4. Make eye contact before speaking to your medical provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.
5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.
6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.
7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.
8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask her to clarify or simplify her words.
9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.
10. Take a friend, loved one or advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your
companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.
11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.
12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let her know. Sometimes these
concerns can be easily addressed.
13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.
14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near
what they imagined.
15. Ask the physician if there are resources or support groups she would recommend.
16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.
17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. This sets a standard that you are the manager of your health care. It also makes it easier to give copies to
other health practitioners.
18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf
---------------------------------------------------------------------------------
Some questions to ask your doctor...
Do I need to be vaccinated for hepatitis A and hepatitis B?
What is my genotype? What does my genotype mean?
Do I have liver damage? If so, how much liver damage is there?
What are my treatment options?
Is there one treatment you think is best for me?
Are there any clinical trials?
What are the benefits of each treatment option?
What are the potential risks of each treatment option?
How can I protect the people around me from hepatitis C?
Do I need to start treatment for hepatitis C now?
How will this treatment interact with my other medications?
How will you assess whether the treatment is working for me?
What should I do if I have side effects? How can I manage the side effects?
What are symptoms to pay attention to and look out for?
How likely is it that I will develop cirrhosis or liver cancer?
If I do not start treatment now, how often should my liver be monitored for liver damage?
How often should I see a liver specialist? Primary care physician?
Hi there. I am so sorry to hear that you have relapsed. I think I can answer some of your questions. But first, the doctor is likely to put you on a drug called Harvoni made by Gilead, or a combination of drugs called Viekira Pak manufactured by Abbvie. Both are excellent treatments for hepatitis C, with minimal side effects.
Hepatitis C comes in 4 stages with cirrhosis being Stage 4. Then cirrhosis comes in three classes called Child's Class A, B, or C, depending on how well your liver is working. My best guestimate would be that you are a Child's Class B as you have some things going on that show your liver is beginning to decompensate. That would be the varices and a bleed. Also your platelets are quite low although not in a dangerous level. I would be interested in knowing what your albumin level is and how your white and red blood count is holding up. With Child's Class C, which I do not believe you have, I am not sure that they would offer you treatment without you first being evaluated for a transplant.
So my questions for your hep doc would be, which treatment did he prefer? Which drug was studied more closely in people with late stage disease? And should you be evaluated for a transplant (not saying you need one, but it is sometimes a good thing to know).
Good luck and let us know what the doc says.
Hepatitis C comes in 4 stages with cirrhosis being Stage 4. Then cirrhosis comes in three classes called Child's Class A, B, or C, depending on how well your liver is working. My best guestimate would be that you are a Child's Class B as you have some things going on that show your liver is beginning to decompensate. That would be the varices and a bleed. Also your platelets are quite low although not in a dangerous level. I would be interested in knowing what your albumin level is and how your white and red blood count is holding up. With Child's Class C, which I do not believe you have, I am not sure that they would offer you treatment without you first being evaluated for a transplant.
So my questions for your hep doc would be, which treatment did he prefer? Which drug was studied more closely in people with late stage disease? And should you be evaluated for a transplant (not saying you need one, but it is sometimes a good thing to know).
Good luck and let us know what the doc says.
When you look at the questions on the link.
Look at the post by Pooh. The single line questions are very beneficial. Those will compiled by clearly the most experience on this forum "HectorSF"
I wish I would have had that least when I first say a doctor for Hep C.
Best to you
Look at the post by Pooh. The single line questions are very beneficial. Those will compiled by clearly the most experience on this forum "HectorSF"
I wish I would have had that least when I first say a doctor for Hep C.
Best to you
Thank you very much. I'm calling him today. A gastroenterology Dr is doing my endoscopy tomorrow. I guess it's another test they must do to get my insurance to cover these treatments. It's a 24 week treatment. Does anyone know what it's called?
Welcome to the forum. Here is a link to questions for your doctor.
http://www.medhelp.org/posts/Hepatitis-C/questions-for-doctor/show/1916412
http://www.medhelp.org/posts/Hepatitis-C/questions-for-doctor/show/1916412
I apologize as i don't know the proper terminology for all of this. What would the abbreviated letters be. I have my test results (latest) in front of me.
Hi and welcome to the Forum.. You have come to a good place to get information, and support. We have all beenthere, or are there now.
have you had a Viral Load test and if you have one, a Genotypetest? If so, what are your numbers there? That information, along with what you posted above, will help us furnish you some answers.
Hang in there, and again, welcome to the Forum! Pat
have you had a Viral Load test and if you have one, a Genotypetest? If so, what are your numbers there? That information, along with what you posted above, will help us furnish you some answers.
Hang in there, and again, welcome to the Forum! Pat
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