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Post Info TOPIC: Please help is it to late?


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Hi Ohiodad!,

Hey, ya, what Tig said - I am also VERY glad to hear from you again, AND with such good news you bring too!!biggrin That you have already started into your Zep tretament (one week done!) and that you are already feeling some better!! Wonderful news indeed.

Please do ask you doc/nurse/office staff for copies of your labs (the old ones - your pre-treatment assessment labs, AND, the labs they do on you now through treatment - if you can ask for them and obtain them, we can then help you decipher them and you will have more knowledge at your fingertips (being that you were noting the docs seem to be keeping you out of the loop, so to speak).

Try to get paper copies of your blood lab tests, not just "verbals" about the results from them. You may have to really make a concerted effort to get them to give you your own paper copies of these, but they should, and will, if you ask and keep making the request until they come up with them. They may direct you in how to get them yourself easily "on line" - but, you may find that difficult, it's just hard to say what is the easiest way to get full copies of your labs.

All and any of your blood tests would be of interest and valuable info (for you and us) ... such as you past and current "liver function tests"(LFT's) or also called "liver panel", also sometimes refered to as your "enzymes" which is innaccurate because the panel includes more than "just" your enzymes! Ask for all and any of the "panels" they have probably already repeatedly done on you, they may refer to "general chemistry panels" or "metabolic panels", "cholesterol panels" . But any blood lab reports you can get, such as CBC, RBC's, ALT's, AST's, ALP, bilirubins, albumins, proteins, AFP's, INR's (past and present) will all be valuable info to know going forward.

Your recent abdominal ultrasound (from back in Sept would also be very good important info for all of to suss) - there should be a radiologists report in your file descibing what he notes about your ultrasound.

I am so glad you are already feeling some better, it must have felt a big relief to get get started eh?

You will likely be due for a big wack of blood tests again at 4 weeks into your treatment, and then (at least) again at the end of 12 weeks, your end of treatment (ETO). Both of these should include a viral load (VL).

Keep us posted please, let us know in what ways you are feeling better. Is the abdomen feeling any better? Or the joint discomfort or tiredness? Hope so.  smile C.

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Tig


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Hi Gabe,

Its good to hear from you again! Congrats on getting started, that’s fantastic. I don’t think you’re imagining anything. We have had a lot of people mention they started to notice improvements right away. I honestly can’t tell you why, but these are effective drugs and one of the first things we see is a reduction in both viral load and liver inflammation. That very likely (in my opinion) provides health benefits in a number of areas, including your emotional well-being. Whatever it is, go with it! You’re on your way to a healthier, happier, Hep C free life. Get ready to enjoy it all! smile



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Thank you so much everyone. I started zepatier 7 days ago. 1 question I have is I am starting to feel better. Is that just in my head or is it actually possible? And thanks again guys I was depressed for awhile cause I didnât know if I was going to get it.

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Gabe o
Tig


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Not that I'm aware of. I've been taking it for years and take 300 mgs three times a day right now. You'll have to ask your doc, because you've got some other considerations to deal with, but it hasn't ever presented me any trouble or changes in my blood work that would indicate that.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Gabapentin
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Is gabapentin really hard on your liver?

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Gabe o
Tig


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I'm glad you're avoiding the booze, it's bad news when you've got liver disease. I wish you would consider the paracentesis if the docs think it's necessary. We've got some people here that can attest to the fact that you will feel 1000% better afterwards. Don't let fear keep you from doing what's needed. Remember, there's some little ladies counting on Daddy to make the wise choice, not just the right one.

Share any of those lab numbers you feel like putting out there. If you need some help, let us know. There are some great organizations out there that can offer information and other assistance. We have a lot of good stuff here on the forum, don't hesitate to ask for info if you need it. This can be confusing for all of us and was until we helped each other through it. No question is unreasonable.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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No drugs or drinking for me I'm on state insurance and the only way I can get the meds is to have at least 6 months of documented drug and alcohol screenings and if you have just 1 dirty they deny you for a year also it's some my fault too I've taken way to long to get myself clean and sober but with that being said a person has to start somewhere and here I am on my knees begging my god for forgiveness hoping I didn't put it off to long I'm keeping records of all the information that I get from everyone my doctor did tell me I would be cured by Christmas thanks for all the positive comments everyone I'm not going to give up

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Gabe o
Tig


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Hi Gabe,

Brother, you need to sit down with your doctor and get some answers. It seems obvious that you've been ill for quite awhile. If you're dealing with HCV, advanced liver fibrosis and ascites, they should be a little more forthcoming with information. You need proper diagnostic test to determine your actual fibrosis score (F Score). The blood marker tests for someone with your symptoms and level of damage, are woefully inadequate in my opinion. Have you had an endoscopy done? They look for varicies in the esophagus and stomach. If you have ascites, and portal hypertension, you NEED to get that done.

If you're drinking alcohol, you have to stop immediately. Any alcohol at this point will only hasten progression. You mentioned your Dad having the same problem. Is there a family history of liver disease? I'm sorry to hear about your girl's Mother, is there anyone that might be able to help you out temporarily? Sounds like you could use some. The fatigue you're feeling is most certainly secondary to the liver disease. Treatment will help you regain some of that lost energy, but it will take time.

You have substantial liver disease and need to get some answers from your doctor. Don't wait for them to get in touch with you, YOU call them! When you call, tell them you have a list of questions that you want to discuss with the doctor at the next appointment. You have a legal right to a copy of every lab test you've had done, get those copies before you leave. We can help you understand the numbers once you have them. If you aren't getting the help or answers you need from this doctor, you have to see another liver specialist. You need to do this, now.



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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The doctors around here don't seem to want to give you much information like numbers or what they mean every think I know is from me trying to educate myself and then asking questions when I'm at the doctors

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Gabe o


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Other then feeling like I just went to Golden Corral I am just very tired no energy zero energy and all my joints are sore feeling but I've been much sicker from other things just mostly the fluid and that worries me cause the loss of the fluid actually killed my father his belly button started leaking and he dead from potassium loss I think kind of like dying from dehydration or something like that I know it was because his belly started leaking

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Gabe o


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Gabe, In my opinion the good news is that they came up with the F3 by means of blood work,not by fibroscan or biopsy.  I have heard that the blood test F score  is not very accurate above F1.  Lets see what your  enzyme numbers are.  Fear has a way of putting things out of perspective, you may not be  F3.  Other than ascites how do you feel.  RC



-- Edited by robertsamx on Saturday 2nd of September 2017 01:38:37 PM

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Yes this fluid is driving me crazy and I am quite afraid to get a paracentesis

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Gabe o


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Sorry genotype is 1 and viral load is 1.6 million and the fibrosis test they do with the blood work was a F3 I just had a sonogram done but I don't have the results to it yet

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I seen my dads belly get where mine is now and 6 months later he died so I am worried I know it is a very good cure and there is a lot of treatments and new medications and it's getting even better. I don't know how well the (cure) works for people with almost complete liver failure i'm sorry I don't know all the correct words and terminology and I type in one long run-on sentence I have 3 very young girls to take care of and I'm very worried that there's Not going to be anybody here to take care of them their mother overdosed and I don't have any other family

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Hi Gabe, I want to welcome you to the forum!  It's never to late. Get in front of a good Dr. Who's specialty is Hepatology. If you get too overloaded with fluids they can remove it from your abdomen. It sounds like other than the fluid loads, your compensating well?  

Remember what we all have told you- ITS NEVER TOO LATE. You can do this, its a process,You half to be patient. Bang on all the doors you can. Call your Dr.- Dont wait for them to call you. Once you establish a relationship with your Dr. You may be able to back of a little. Stay aggressive.

You have heard this before that now is the time to get treatment with the new DAA's. So know that once you get treated the damage to your liver stops, and regeneration starts.

Whats your geno type.  Do you know your viral load?  What are your LFT's?     RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Hello Gabe,

It is not simply "some hope", your situation is far less serious than many here that have gone on to recovery.

Each of us faced the cold chill of the diagnosis. In the old days the prognosis ran at about 50% and then only after grueling treatment plans.

Today things have drastically changed. Treatments are running in the high 90% range and in the rare instances of not clearing on one treatment, another comes in behind it and does the trick. I am living proof of that.

Once you arm yourself with proper information, you will sleep far better at night knowing that if you had to get this virus, today's treatment options make this far less daunting.

Stay with us here, ask questions and we will help. Someday soon you will be in the position to help others and you will find a joy in doing so.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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To Tig: I' just started going The gastroenterologist I had the fibrosis test that is done with the bloodwork and that's how they got the F3 prognosis I also two days ago had the sonogram done and haven't got the results for that yet i've been tested for A and b it shows that I had b at one point in time and now I have the antibodies for it they told me I had ascites about a month ago when I was complaining of feeling for all the time and not being able to get a full breath of air thank you so much for everyone being concerned it's nice to hear that there is some hope

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Gabe o


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Dadinohio wrote:

 Am I to late will my ascites improve and my belly go down?


 Hi Gabe and welcome. I'm proof that recovery from ascites is as simple as getting on treatment and eliminating the cause. Before treatment my cirrhotic liver was decompensated and I was having painful ascites fluid pumped out of my big belly on a regular basis along with having hepatic encephalopathy, portal hypertension, enlarged spleen and jaundice. The ascites and encephalopathy cleared up quickly after starting treatment, the hypertension is better now, and my spleen rarely causes pain anymore. If you are F3 then you have every reason to expect better recovery than me. It's certainly not too late! This is very doable for you.



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Hi Gabe.....Welcome!!!  so glad your here, your in the right place my friend.



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda



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Gabe, I am just a newbie here, but I can promise you, you're in the right place.  These people will guide you through whatever path you end up taking and will be with you all the way.  We all know how scary this can be but knowledge is power and you will find a plethora of it here!  Good luck and have faith!



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64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Greetings and Welcome.

Too much good information already given so I will simply answer the question in the heading.

No. Get on treatment and you will do fine.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Hey Ohio dad,

welcome here. Calm down, don't be afraid.

We have had PLENTY of people here who have been really, REALLY successfully cured with just GREAT resuts in the end.

It is wonderful that you are in the process of getting ready for treatment. It's too bad your docs are not keeping you in the light, informed and reassurred that you are going to be cured and get better.

When you have had time to browse around the site a bit, you will find many people here who were very much F4's, are now perfectly cured and healthy again.

Acities, if that is what they have found in you as part of your hepc, is a sign and symptom of having hepc, but that in itself, alone is not an indicator that you will not respond beautifully to treatment, acities too will improve and resolve as a consequence of getting rid of your hepc infection.

So, remain calm, first things first, step by step, the main thing is to get your treatment, which is what you are doing. You are doing the right things.

I am glad you have come here. You will soon find out, that nowadays, we have the VERY best drugs in the world, known to man, and you will be cured of your hepc and recover.

Others will be along to meet you, offer opinion or advice as they can. Take a breath, try to relax a bit and do some reading and learning here. I know the "fearsomes" you are going through right now, but you will soon see - fear is one of your opponents to battle and knock down as early as you can, you may find the hepc infection is the easiest foe to beat! : ) C.

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Gabe,

I'm sorry you're frightened, but you need to slow down and take a breath first. No, it's not too late. There's a few questions I want to ask and then we can move forward with some answers.

  • Who is following your case?
  • Have you seen a specialist, such as a Gastroenterologist or a Hepatologist to discuss these findings?
  • How did they come to the conclusion that you have a fibrosis stage of F3?
  • Who diagnosed you with ascites?
  • Did you have an abdominal ultrasound?
  • What kind of tests were performed to determine that? Fibroscan, biopsy or blood tests?
  • What genotype of HCV do you have?
  • Have you been tested for Hepatitis A and B? 

Your viral load of 1.6 million is elevated, but don't be concerned with the number, it doesn't mean a thing, other than you have active viremia. The only time that number matters is when they decide what treatment to start you on. If it is less than 6 million, some people qualify for a shorter course of treatment. The number does not change your odds of curing the disease.

First of all, F3 is not considered Cirrhosis, F4 is. Ascites is generally associated with advanced fibrosis in the F4 stage. There are two types of cirrhosis, compensated and decompensated. Ascites is usually associated with someone experiencing decompensated cirrhosis. Someone with compensated cirrhosis, may not even know about it and live a normal life. That's rare, but many people live with cirrhosis all the time. Without treatment, a compensated cirrhotic patient very often progresses to the decompensated stage. Disease and lifestyle often add to the progressive timetable. That is when the liver begins to fail and isn't working properly at all. When that occurs, things like ascites develop, which is abdominal fluid accumulation. If it can't be reduced by medication and treatment, there are procedures they can do to remove the fluid, called paracentesis. Hepatic encephalopathy often accompanies decompensation. Both types of cirrhosis often involve portal hypertension, spleen enlargement, and other complications. Liver blood tests are generally the first indicator that things aren't working properly. The liver enzymes elevate, which leads most physicians to test for various forms of hepatitis.

I don't want to get ahead of myself, so please answer some of my questions and we can discuss this further. If you have ascites, it can be treated, but the cause has to be dealt with first. Many decompensated cirrhotics are successfully treated and experience good improvements. The most important thing right now is to have a qualified liver specialist on your case. I hope with some information, we can help you understand this better and reduce your fear. 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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I'm so afraid I have a fibrosis score of f3 and a viral load of 1,600,000 and starting to get ascites. In the process of getting approved for treatment. Am I to late will my ascites improve and my belly go down? These doctors won't be straight up with me.

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