Hep C Discussion Forum

Linuxter · Guru

RE: new member, lots of questions

irenesnow · Member

Glad to hear you are doing so well! What an odyssey you've been on! I have not been on this site for several days, but all your words of encouragement have stayed in my thinking! My husband will be having some blood tests tomorrow and his liver biopsy on Monday. He has a really positive attitude, meanwhile I guess I'm in charge of worry.

Meanwhile, I just read this article and it makes me just furious: http://www.msn.com/en-us/money/markets/the-killer-disease-on-the-rise-that-could-explode-health-costs/ar-BBsGs5B?li=BBnb7Kz

All this talk about how, oh how can the cost of hep-c treatment be contained? Does it really take a brain the size of a planet to figure this out?

singsong · Veteran Member

Hi Minda,

Welcome aboard. Your husband is fortunate to have you there to care and do the worrying. I agree with Tig's thoughts and recommendation. Flying under the radar. I know in my own experience, once I made the decision not to go Interferon/RIBA route I pretended I did not have HCV. I was a great pretender for 20 years. If any of the very very few people that knew I even had it asked me about it, I said I preferred not to talk about it. I don't mind now, because I'm on my way to getting off this train, but still like to pretend nothing is wrong with me. That's just my response to it. It's the only way I could cope.

irenesnow · Member

Beautiful words Dave! This has been quite a weekend, and your thoughts here help enormously to put a bright spot at its end. Yes, he was certainly there for me and with me when I needed him, and I will be there for him too! You are all such a wonderful group of people!!

irenesnow · Member

Tig! When did you meet my husband? I never noticed you around the ranch...Points well taken.

Tig · Admin

Minda,

I gather from your story that he has always been a strong willed individual and not accustomed to babying or overt signs of care (concern). You call it mushy, but whatever it is, he sounds like he prefers to keep it under the radar. Some people would rather power through it and ignore whatever parts of it he's able. Let him know you're there if he needs anything and just monitor the situation as best you can. These new medications are easier and he may sail right through it. If he needs to take a break, I'm going to bet he'll know when to do it. As long as he stays hydrated and eats a balanced diet and takes his medication on time, everytime, he'll be fine. He sounds like a pretty capable individual and simply wants to do things his own way, without a lot of fanfare. Nothing wrong with that!

Linuxter · Guru

Hi Minda,

Love, in whatever ways work for the two of you, Respect for each other, showing that you Care ...

I would say you are doing these things already smile

We each react to stress and change differently, some reach out, others may pull back but it's wonderful that you are there (perhaps not in locality but There as in concerned and willing to help in any way that you can. It's difficult for anyone as independent as your husband must be (and with good reason, holding a ranch together cannot possibly be anything close to an easy task), so be there in just the ways that you know how to be there for him ... I know it's often as tough or tougher on our loved ones when we are under the weather ... so your reaching out here is a wonderful thing too, congrats on finding this wonderful place ... we are here for you so you can be there for your husband.

Having just recently (Oct 2015) learned that I had HCV and facing treatment (which I made it through in great part due to my loving wife and the fine people here), I can tell you that it's an emotional roller coaster for your husband and for you ... but you will both get through this and all will work out ... just keep doing what you are doing ... he will appreciate it even if he may not be able to show it right now ... he'll be fine and so will you, you WILL get through this together smile

Dave

Perhaps treating your husband the same way you always have is best ... Just carry on, do show him you care, but he'll be fine ... let him go about doing what he does on a normal basis ... perhaps try to make sure he follows the doctors advice but sometimes doing nothing special or different can be best too ... just some thoughts.

Oh, and congrats to your on surviving breast cancer ... Hurah! Nice work!

Being a survivor, we know you are strong as your husband is strong ... not to worry.

-- Edited by Linuxter on Sunday 24th of April 2016 10:12:42 PM

irenesnow · Member

Hi - I'm back with another question. Can anyone offer some advice on what newly diagnosed people might need/want from their (in this case) spouse? I got barked at a little today for asking how my husband is doing one too many times. We aren't generally a "mushy" couple, but I am concerned that he's okay mentally with this, that he's feeling okay, and so on. I know what I did and didn't want/need when I was first diagnosed with cancer changed from moment to moment those first few weeks, but maybe I'm making the wrong assumption that he's going through the same thing. Being far apart isn't helping.

irenesnow · Member

This was exactly the information I wanted about fibrosis. Thanks so much!

Cinnamon Girl · Guru

HI again! Sorry I didn`t give you the answer you were hoping for! But you`re absolutely right, with the new DAA treatments we`re seeing amazing results, so many more people reaching SVR than with the old interferon based treatments. In fact, some of our members had failed tx more than once on previous occasions and have now gone on to clear the virus with the new meds.

I had to smile at the story of your hubby`s exploits, sounds only too familiar! You did well to stay out of trouble!

On the subject of the liver repairing itself, we often see people`s level of fibrosis improving over time once they`re free from Hep C. Here`s a video which you may find interesting to watch, it`s only just over 4 minutes long..

irenesnow · Member

Good, helpful information, Cinnamon Girl and most appreciated! I was hoping for something more like it makes a LOT of difference, but it seems like the newer medications have really changed the whole game, since they're so effective.

I was never much of a rowdy myself (and having come of age in Ca. in the '60's that's almost embarrassing), ended up married to a guy who, although he hasn't had a drink in 28 years, is still banned from certain bars in a certain small town. The irony is too obvious. Over the years, as I've met more of his old running pals, I've heard more and more stories that have left my jaw dropped. But these days, he's clean, sober, and the best person I know! Several of his old pals have been diagnosed with Hepatitis, and I really thought he had dodged the bullet. I think he knew that night in the ER when they did the CAT scan what the deal was, just didn't want to tell me. Today he's very upbeat and I'm the worry wart!

Thanks again for the encouragement!

Cinnamon Girl · Guru

Hi Minda, welcome from me too!

First of all, congratulations on beating your cancer, that really is fantastic!

I see you`ve already been given lots of good information, and I just wanted to reply to your question..."does getting treatment before feeling symptoms mean better chance of remission".

From my experience here I would say that it makes no difference at all and has no bearing on how someone will respond to their treatment.. Some people have noticeable symptoms whereas others have no idea that there`s anything wrong with them at all, and getting the diagnosis of Hep C comes right out of the blue, as in the case of your husband. My own personal experience was that I had quite definite symptoms for some time before I did my tx (treatment), for example... pronounced fatigue,`brain fog`, itchy skin, aches and pains in muscles and joints. But I responded very successfully to my tx (treatment) a few years ago and I`m still free from Hep C.

I`m so glad you found us, and very best of luck to your husband. Please keep us updated, and keep asking questions, we`re here to help!

And, by the way, Many of us here can relate to having led a pretty rowdy life in our younger days! smile

irenesnow · Member

Now I just learned something - I didn't think the liver could repair itself! Wow!

Tig · Admin

SF,

You're referring to a Trans Jugular Liver Biopsy. They insert a needle and catheter through the jugular vein in the neck. Whether it is safer depends on why they need to make the approach that way versus a quick in and out percutaneous approach. If the abdomen is full of fluid, BMI, etc., they may opt for that method.

They can take a multi sample percutaneous specimen and be very confident of the staging results. Malcolm had one recently and he requested samples from both lobes to confirm his overall fibrosis stage and was informed that he had experienced some impressive fibrosis regression. A routine percutaneous biopsy takes a multi sample specimen from the right lobe, which is adequate for fibrosis staging.

Trans-Jugular Liver Biopsy

Shadowfax · Guru

I understand that a longer but safer way was for a radiologist to go from you neck through arteries guided of course into the liver. There would be much less chance of problems.

I still never wanted one because unless they hit the right area, depending on the state of your liver, the test could come up with incorrect results.

I am pretty sure they would no longer have to aim on me now. Again fingers crossed that if I slay this dragon or when that the cirrhosis may regress some as it has in others.

Thank you for sharing that

SF

Tig · Admin

Hey SF,

No, a couple hours at the most and that was after the twilight anesthetic. My first was done using a local anesthetic and I was out of there in an hour. Very simple. There are stories about post biopsy problems, but it's rare. I would have another if offered, they are very accurate (imo) and while invasive, are easy. You don't want to go home afterwards and play a game of basketball, but normal routines can be followed fairly quickly.

I think they will be able to improve the reliability of non invasive testing soon enough and biopsy will become less common. It is stil a valuable diagnostic tool.

irenesnow · Member

How did that affect treatment decisions? Were they able to get info another way, or did they make "worst case" assumptions and go from there?

Shadowfax · Guru

I refused a biopsy when it was suggested by in 2001 ish and then 2004.

I thought you needed to say on your side for approx six hours to ensure there was no bleeding while BP was closely monitored?

irenesnow · Member

Thanks for this info. I think I'll just go home and be the chauffeur. I want to be there - for both of us! I have another 6 weeks on this job before I can go home, I'll go nuts if I have to wait that long to see him, and as much of a macho tough guy as he is, I think he'll be more at ease if I'm there. Never tell him I said that...

Tig · Admin

The biopsy process is fairly easy and straightforward. I had several and didn't have any problems. They are generally performed in a specialized out patient surgical center or hospital on an out patient basis.

I would go in, register, go to a lab and if they used an IV sedative, they started an IV. I spoke with the Radiologist or attending physician that would perform the procedure. My last was done with CT guidance, that just assures placement. When he was ready, they gave me the good stuff and before I knew it they were welcoming me back to the world of the awake. I had to stay in Recovery for an hour or two so they can monitor the biopsy site, which is nothing more than a needle stick. After that I got up and walked out. Had to have a driver though because of the medication they administered. So plan on being chauffeured. That was it. It wasn't bad at all, little bit of tenderness afterwards. Here's some info from Web MD:

Biopsy Info

irenesnow · Member

THANK YOU ALL SO MUCH!! For the warm welcome, the reassurance, and the great advice! I had to smile some at the advice not to go crazy "researching" on the internet. I am a breast cancer survivor, made exactly that mistake when I was first diagnosed, and got this same good advice from my nurse navigator. Truth be told, I was at it again but found you all pretty quickly. Will stick with you from here on. I guess I have lots of reading material for my Sunday coffee, so I'll go get started now.

I am going to take off work and go home when the biopsy happens. Is it a difficult process?

JimmyK · Guru

Welcome!

I can add nothing to what Dave said and he caught everything you need to know upfront. About the only thing I could add is fingernail clippers should not be shared. (That is how good of a job Dave did in his brief yet highly accurate post.)

Welcome!

JimmyK

wendyo · Guru

Welcome Minda,

The guys got you started off with some great info. (that's what we do here) First things first and get your hubby to the doc to get the RNA test at the very least and then you all will know next steps.

Glad you found out so it can be addressed and dealt with promptly.

wendy

Tig · Admin

Hi Minda,

I'm glad you introduced yourself and think you will find this a friendly and informative place.

I'm sorry that you received this news out of the blue, it must've come at a shock for you both. Try and relax and move forward with the tests involved. Linuxter (Dave) explained the variety of tests they will likely perform. They may opt for a biopsy to determine fibrosis. Not knowing what they saw on his liver, the may decide on an MRI as well. They'll figure this out and get him squared away. You're right, the kidney stone was a blessing in disguise.

The important thing is getting the tests completed and a diagnosis determined. Until the RNA viral load test, you don't even know for sure that he has an active infection. A lot of people test positive for the antibodies and were able to fight the virus off themselves. That happens in about 20-25% of people exposed. So don't jump to any conclusions, get tested and confirm it.

Dave explained things well. I want to add a link to some additional information that will help answer some questions. Do your best not to worry. These problems will be addressed in the near future and a plan will be discussed to resolve the issues he may be experiencing. HCV is easily treated now. He sounds like he's in great shape from years of ranching and not drinking alcohol are both big pluses.

If we can answer any other questions, please let us know. We have a lot of useful information available here on the forum. Use our search function on the bar above, there is plenty of reading material and first hand experience here. I'm glad you're here!

HCV INTRODUCTION

Linuxter · Guru

Hi Minda,

Welcome to the forum, we're glad you're here!

Be cautious about reading too much on the internet, there is a lot of outdated information out there. Many outdated treatments that do not apply since the new DAA drugs have recently become available.

Here is a link to some information about testing positive for the Hepatitis C Antibody Test ... so further testing will be needed.

And yes, you should also be tested ... but HCV can only be transmitted from blood to blood contact, I had HCV for 40 years and didn't know it, My wife is fine ... it's not easy to transmit HCV other than via IV drug use, transfusions, occasionally getting tattoos etc. You should also avoid sharing toothbrushes (gums can bleed) or razors but other than the above it's very unlikely that you would get HCV from your husband.

Treatment regimes differ depending on the specific type (GenoType) of HCV but they are all relatively easy to tolerate these days. And they work! So not to worry, your husband will be cured of HCV.

We will be happy to guide you in the right directions to learn about and get your husband through treatment.

Once your husband has had some further testing we will be able to guide you better.

He will likely get the following:

RNA test (Viral Load test determines if the virus is active)

GenoType test (Tells what type of HCV your husband has)

Fibroscan or Fibrosure test (helps determine condition of the liver) usually along with an Ultrasound of the liver to gain more information

... and some other general blood work

So not to worry, you've come to the right place.

Others will be along to welcome you and tell you more.

Oh and HERE's a list of abbreviations used on this site.

Talk to ya soon, smile

Dave

HERE's some more reading, it's a bit out of date regarding treatments but there's still a lot of good information here.

Try to avoid the temptation to google and read everything you find, we'll point you in the right directions and there's a ton of great info right here along with friends and support ... we're a big family here.

-- Edited by Linuxter on Saturday 23rd of April 2016 11:13:17 PM

irenesnow · Member

My husband (age 61) had a kidney stone 3 weeks ago, CAT scan revealed "something" on his liver. Today he had an Ultrasound and blood tests, which confirmed Hepatitis. He has not consumed alcohol in over 25 years, but prior to that led a pretty rowdy life. He had no symptoms, other than being tired at times, but he's a full time rancher so works very hard every day. In any case, it wasn't enough fatigue to cause concern. As I look back on it now, I think the kidney stone was really a blessing in disguise, since it may have been a long time before we found out otherwise. We have been married almost 17 years, and neither of us has had any physical contact (sex) with anyone else for that entire time, plus a couple years before we married. So my questions are: does getting treatment before feeling symptoms mean better chance of remission? How much do the newer medicines (which his doc discussed today) interfere with one's daily activities? I know I need to get tested, and will do so right away, but the little bit of reading I have done seems to say that there's a reasonable chance I don't have it - any opinions on that? My work has me away from home right now, so I'm a little freaked since I wasn't with him to ask my own questions. Any information and/or advice would be most appreciated! He will be having more blood tests and a liver biopsy soon.

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