A welcome from me too. These days people are sailing through treatment and we haven't had many fails at all. These are good times and treatments go very fast. I am on my last month of the combination Sof/dac and its been easy as pie. I don't recommend taking pills near toilets though! ;)

Welcome to the forum Cathy,

You are on one of the easiest protocols there is! I know, I was on it just this year. Mild headaches always dissipated with only water was my main side effect. As it has been said, hydrate and hydrate and you will most likely not feel much after the initial attack on your hvc takes place. That time should be right around now.

There is so much information here and so many people to answer questions about almost anything.

We are glad you found this forum. As Tig mentioned, it would be helpful if you could give us an insight as you your stats and type of HVC so we can watch your progress as it unfolds.

Good luck and you are on the right path.

SF

Hi Cathy,

For me the little side effects I had tapered off after the first few weeks. As I suffer from nausea and insomnia anyways, that remained but I took my natural sleep aid and my ginger and I did ok. Hydrate, eat healthy, exercise and rest when my body said so was how I got through it. As I too am in recovery having that support as well as my online family helped immensely. 

Keep us posted!

Fellow sober Floridian,

wendy

Hi Cathy. Harvoni made me feel a little tired too but not enough to keep me from doing my day-to-day activity. I had some insomnia at first but then began sleeping extra well while on treatment. Actually, Harvoni was very easy for me and, most of all, it was successful in treating my Hep C.

 You'll find lots of good info here to help you have a smooth ride to SVR. We have several members in recovery too, including myself, so you are not alone... And congrats to you on 10 years sober!

 What Tig said is very important ... be sure to stay adequately hydrated!!!

 Welcome to the forum.

Hi Cathy and welcome to the forum! You have found a great group of non judgemental people and we are all here to support you along your journey to a Hep C free life.

If we can offer any information, please ask. We have a lot of information available here, so be sure to utilize the search function at the top. Check out the menu bar where it's located to find some useful resources, like current posts and the calendar.

One piece of important advice is to remind you to hydrate adequately. Make sure you are drinking no less than 3-4 liters of water everyday! Doing so will minimze any side effects you may experience, headaches primarily. Watch your diet and if you need some good ideas, check out our Nutrition section. The Green Smoothie thread is one of the best!

It would also be helpful if you entered some of your history to your signature line. It helps us when replying to questions. You can see what others have added to theirs if you need some ideas. 

I'm glad you're here!  

Hi out there! Started on Harvoni on Aug 1st 2016. I see Gastro doctor for 1st time on the 18th. What question's should I ask? I'm feeling tired and insomnia. I know the good out weighs the bad it's taken me over a year to get insurance to pay for my treatment. Feeling grateful to have a chance to heal my poor liver. Haven't drank in over 10 years. Well 27 all together being a recovering alcoholic has put me on a good out come I believe. My Higher Power was getting me ready for the physical healing I believe.  

Hello all!

Hey Loopy Lisa,

No my tests are not until the end of July, July 25 to be exact if I choose to go exactly 12 weeks. I only got my requisitions and that is a good thing because last time my NP tried to mail them and it took over two weeks. I finally got her to send them again and then drop them off at my Specialist.

Tig.

I am not aware of testing differences between C and B other than the range for B is <20 whereas for C it's <15. As you had mentioned even these numbers are cast in jello because it could be <15 detected. It has been for some in here. I do realize that the Qualitative (QLT) test is the one they need to prove or disprove the existence of the virus. So far my B has stayed away and we are hoping that will be the case but once again they are checking it. 

Thank you for your great input regarding these tests. It is very much appreciated.

SF

Hey SF,

One comment on the Qualitative (QLT) vs Quantitative (QNT) tests. Going back in time a few years, the QLT was the most sensitive and as you said, it was done to confirm positive or negative. I'm not sure of the cost, but it was, at the time, much more expensive than the QNT, because it required much more work due to it's sensitivity. The QNT was only able to detect down to lets just say 100 iu/ml (it varied), and below that figure, you were considered undetected. We were thrilled to be told we were undetected, but we know now that was often not the case. I don't remember hearing people mention being <100 but still detected. Now they can test as low as 7-12 IU/ml in the QNT, maybe even 5, idk, but it's low. If the results are below the LLOQ (Lowest Level of Quantification), it will say <7 or 12 and either detected or undetected if they can't quantify it. The cost has actually gone down for the QNT testing, so in some cases for HCV, if the cost of QLT is excessive and if you're having to pay for it, the QNT is more than sensitive enough to confirm viral load/detection. I'm not familiar with the testing requirements for HBV, so I would be interested if you could explain that sometime. 

The entire testing process, their sensitivity and the improvements are really advancing. What used to be "in the ball park figures", have reached "home run" status. The accuracy leaves us without question now, as it should be.

I wish you a "Home Run" my friend, good luck!

Sydhanrahan wrote:

---

Hi wmly1960,

no i didn't have a procedure done. Maybe you are mixing me up with someone else or maybe I just didn't know what parcentesis is and threw it in for good measure. 

I had ascites but they used an ultra sound to detect it and then put me on 2 lots of diuretics at the same time as I started RIBA. I didn't realise what were RIBA symptoms and what was caused by being dehydrated because I was also told to restrict my fluid intake. In the end I could pick up the skin on the back of my hand and it would just stay there for some seconds looking like baby bird run over by a car. My kidney function went out of whack for 6 weeks or so and they gradually lowered the dose of diuretics - I'm still taking 20mgs frusemide daily - a second ultra sound has Found the ascites reduced from moderate to mild.  I think they are being super cautious with the ascites because of my bad history of infections. I had most of my left breast removed ten days after my last baby was born because mastitis turned into an abscess and when they drained it it turned gangrenous. Then I got septicaemia from a kidney infection. Years later after having my appendix out my whole abdomen became infected and I had an open wound for two months. Now I have a tea towel - or some surgical equivalent- sewn under my skin to try to stop my stomach from falling out. I know, I know, if only they held Miss Universe Sixty Plus, I'd be a shoe in. 

But it sort of brings me to being brave enough to pose an answer as to why not many people come to your support forum. And maybe others here will hate me for admitting this, but I don't like going to that liver clinic at the hospital because it's full of exjunkies. It's what I could have become instead of leading my boring middle class life. I don't want to see it. Or them. A lot of them stare vacantly at the wall or talk in too loud voices. They have greasy hair and bad skin and no teeth. They smell of dirty skin and stale cigarettes. I would have no problem with them if I met them at work or saw them in the street, but I don't want to be categorised as one of them. I'm ashamed to admit that I must basically be a shallow snob. But that's the only conclusion I can come to. 

it's ironic really because on this forum many people have contracted Hep C through no fault of their own, while I did use drugs intravenously, no matter how long ago or for how short a time. And these people don't seem to judge me for that. But here we can't see or hear each other so we can't make the same shallow value judgements that I make, and assume the rest of the world does, when conversing with people in the flesh. Only hearing the voices has been very freeing for me - the wisdom, intelligence, humour, generosity and bravery never get messed up by anything else. and I'd never want to Skype anyone on here. I love my illusions, if that's what they are. 

most people here are American and it's a place I've wanted to visit for ever but I feel as though I have "travelled" to meet new friends here in a much more meaningful way than taking photos of beautiful houses in the south, or seeing the Statue of Liberty or the trams of San Francisco would have been. I have been graciously allowed into the private places in people's heads and while I would love to be able to describe those cultural differences I feel so keenly, it's so intangible it would be impossible. 

sorry this has turned into a rant and rave - move it, delete it, or whatever Moderators.

Syd

ps. I do have mental pictures of most of you - 

 

---

 I think its ok to feel that way. I never got HVC via drugs, because I never did them. I have a deceased sister that was pretty much as you described, and many times I had to search her out to make she sure she was still alive and Ok, well, until one day she wasn't. Unintentionally, I got to know a few people that had got lost in that life style, and one thing I was always remember is apart from living a hell I couldn't understand, some were still lovely people with hopes and dreams. I try to remember that side of things. It is hard to get past the missing teeth and looks. But, I can honestly say, not one of them ever tried to harm me in anyway. I guess they just saw a sister trying to help another.

I think after what you've been through its incredible. I would have been a blubbery mess, and not coped at all. But I'm glad you're here to keep us smiling! :D

Shadowfax, its in the middle of the night and I'm half asleep, did you get the results? :D

To be quite honest, when I saw the word mental, It was like you have known me for years and years ....

On a separate note, I just picked up the requisitions for my EOT+12 labs to be done the end of July.

All the regular tests and then the grand finale

HVC RNA Qualitative

HBC DNA

My stomach actually felt a bit queasy as I picked them up thinking about this journey and the possible end to that part of it.

It's all good though.

Now I need to google and remind myself the difference between Quantitative and Qualitative.

SF

** Waiting to hear Canuck's response to Syd's description

• Qualitative Test This kind of test detects the presence or absence of HCV RNA. It is reported as either detected (positive) or not detected (negative). The qualitative test is useful to confirm an active HCV infection. The L in qualitative can be equated to a label as in it is used to label someone as having or not having the virus.
• Quantitative Test The quantitative test measures the actual number of copies of HCV RNA in the blood. Commonly referred to as the viral load, a quantitative test is typically used to monitor how a person is responding to HCV treatment. The N in quantitative can be equated to a number as in it is used to report the number of HCV viral particles present.

Dear Canuck,

no you are none of those things in my imagination. There, you are a smallish person, with a smiley, alert expression. Your hair is brown, wavy and short.  You wear mostly casual clothes but look carelessly smart and coordinated.

I don't think you are much of a jewellery person. Nor do I see you as wearing a lot of makeup. You walk and move generally quite quickly. 

Right or wrong?

Syd

 Hey syd,

I get ya! About people having difficulty coming forward to share in their soul shaking (often long secreted) life events, even in a non-judgmental site like this. You were using your own examples to help explain why people have difficulties in doing so. You, commenting on the general difficulty, MOST people EASILY have to not being able to accept things, see truths/realities, even look at things ... because they are too hard (and by our very nature of each human being "self") - rarely can we easily be impartial/objective "to see", especially if it entails being dragged up to and past self. You can be objective watching others try to struggle getting past self, but being self, we cannot. There, there tig, I think I just made you feel better, earlier you thought you might not be expressing yourself well, if you thought so (which I did NOT think BTW), just read the above paragraph, until your head hurts.

Oh syd, I so appreciate your humour and honesty, the things which you bare (and bear) that have trialed you (and would anyone) so severely, (from the tea towels, etc., I just learned about, to the diuretic torture I recall), and yet you can still make me laugh in the face of them, right along with you.

All of us come, warts and all, to this kind, safe place, thanks to tig (he too, donned in his "bark" look)! 

I cannot imagine the picture you hold of me in your virtual vision! - prolly better I hope than the red, angry, dripping, wheezing, oozing, pustualizing, alopeciac (if that is a word) imaging I have been recounting of late. 

Miss Universe Sixty-Plus!!! - hee hee, move over, I want in!

Good thing I am capable of understanding you, otherwise, I may have taken offense to your picture of me as "mental", and I would have worried as you spoke of having "illusions" and "hearing voices". 

Lessee, I better think of something to say about Harvoni, as this is a Harvoni thread. hmm, I know!, I will find and post a pic here, depicting what I should have looked like, had I been on Harvoni!  C.

Jimmy, being in a mood is totally okay in your circumstances. I've posted two times about your 12 v 24 weeks stuff and I don't think either if them have uploaded. In simple terms: you're a hero. 

the topic of butt sniffing brings me to the West Australian politician who was caught actually sniffing the chair in which his female colleague had sat. I found it very funny, but also quite incomprehensible?.?. Do any other men secretly wish they were dogs? And are we being discriminatory when we push our anti butt sniffing phobias onto others? How much would you actually have to love butt sniffing to risk getting caught in the act as a public figure? Arrrr the Human Condition .... It's a trick. 

Yes Tig, you are saying more clearly, what I was trying to say. Without the usual impediments  of our superficial appearances, this forum operates so well.

Syd

Tig56 wrote:

---

"...That's human nature. If we were dogs for example, we would just sniff a butt or two and be done with it! Since we've moved beyond butt sniffing (most of us), we have to accept the fact that we live in a different world."

---

 I don't know man. The term moving beyond implies moving forward. Dogs sniff butts and think about it. They are not done with it by any means. They are thinking about it.

Seems to me like man has a greater capacity for thought, but uses little of it.

Dogs are created and they do exactly what they were created to do.

Can man make that observation about self?

Disclaimer: I am in a mood. A definite mood.

Hey Syd,

Goodness! If we could all sit down and share the multitude of procedures, injuries and ailments that we've had, it would take a month to get past the introductions! I'm continually amazed by the strength so many have shown after reading what they've gone through to get here today. You have had more than your share of problems and am sorry to know that you suffered through so much. I do realize that you're also quite a fighter and don't let too many things slow you down for long. The issue with infections is a frightening thing to live with. I had a hernia repair in my 20's that infected and by the time they were done, I had 5 more surgeries to repair the mess left over. They realized on the 5th procedure that they had left a sponge in me from the 4th and it had caused all kinds of extra nerve and tissue damage. One thing after another for so many here. I have to ask, how many of us said the words, "What else can happen?" Then we find out! I have attached a board to my forehead so I can knock on wood when I say such things, just in case! Probably don't need the board though, my head's hard and I'm looking like I've got some bark forming now! I think they call it the "weathered" look!

That clinic sounds like a lovely place. It doesn't sound like an environment that too many would be comfortable being in.  Just a mix of people, with a wide variety of circumstances. Some down on their luck, some digging their way out of a hole and then there are always going to be the people using the same shovel to dig their hole even deeper. It's difficult to say what brought them there, but hopefully they're trying to change their life around for the better. Some will achieve it, some won't. I think if you were to meet them across the miles in the same manner that we do here, you would hit it off great.  Meeting someone by chance on the street, will cause us to develop an early opinion, but as you say, meeting them under special circumstances, in an environment rich in speculation, like that waiting room, fuels the imagination. That's human nature. If we were dogs for example, we would just sniff a butt or two and be done with it! Since we've moved beyond butt sniffing (most of us), we have to accept the fact that we live in a different world. Whatever it is, we try to do our best to remain fair and limit judgement. I believe the forum allows us to be more non judgemental, at least we strive to be, which lets people open up more easily. That gives us the opportunity to be more understanding and tolerant. I think the trust and friendship we develop here, be it through anonymity or otherwise, allows us to see each other more as we are and less about what we appear to be. Don't know if that makes any sense, but I want it to! It's perfectly clear in my brain fogged mind...  But please, I don't think anyone considers you to be a shallow snob! Quit that! We love ya, consider that instead!

Most of us here only have that mental picture of each other, developed by discussion and of course the occasional blurry avatar photo of ourselves. We used to post our own photo's, but many have gotten away from that. That's a personal decision.  Sometimes the anonymity is what opens the door to discussion. Especially when there's something we need to get off our chest or a question that is too difficult or embarrassing to ask. Once we get to know each other, even half a world away, the caution turns to trust and that's so important.  I think people like to have control over how much personal information is shared. If it weren't for that, I don't think the conversations would be as detailed or entertaining as they are! That's another reason we value the privacy of each member here. Using the old saying "What happens in Las Vegas, Stays in Las Vegas"

Hi wmly1960,

no i didn't have a procedure done. Maybe you are mixing me up with someone else or maybe I just didn't know what parcentesis is and threw it in for good measure. 

I had ascites but they used an ultra sound to detect it and then put me on 2 lots of diuretics at the same time as I started RIBA. I didn't realise what were RIBA symptoms and what was caused by being dehydrated because I was also told to restrict my fluid intake. In the end I could pick up the skin on the back of my hand and it would just stay there for some seconds looking like baby bird run over by a car. My kidney function went out of whack for 6 weeks or so and they gradually lowered the dose of diuretics - I'm still taking 20mgs frusemide daily - a second ultra sound has Found the ascites reduced from moderate to mild.  I think they are being super cautious with the ascites because of my bad history of infections. I had most of my left breast removed ten days after my last baby was born because mastitis turned into an abscess and when they drained it it turned gangrenous. Then I got septicaemia from a kidney infection. Years later after having my appendix out my whole abdomen became infected and I had an open wound for two months. Now I have a tea towel - or some surgical equivalent- sewn under my skin to try to stop my stomach from falling out. I know, I know, if only they held Miss Universe Sixty Plus, I'd be a shoe in. 

But it sort of brings me to being brave enough to pose an answer as to why not many people come to your support forum. And maybe others here will hate me for admitting this, but I don't like going to that liver clinic at the hospital because it's full of exjunkies. It's what I could have become instead of leading my boring middle class life. I don't want to see it. Or them. A lot of them stare vacantly at the wall or talk in too loud voices. They have greasy hair and bad skin and no teeth. They smell of dirty skin and stale cigarettes. I would have no problem with them if I met them at work or saw them in the street, but I don't want to be categorised as one of them. I'm ashamed to admit that I must basically be a shallow snob. But that's the only conclusion I can come to. 

it's ironic really because on this forum many people have contracted Hep C through no fault of their own, while I did use drugs intravenously, no matter how long ago or for how short a time. And these people don't seem to judge me for that. But here we can't see or hear each other so we can't make the same shallow value judgements that I make, and assume the rest of the world does, when conversing with people in the flesh. Only hearing the voices has been very freeing for me - the wisdom, intelligence, humour, generosity and bravery never get messed up by anything else. and I'd never want to Skype anyone on here. I love my illusions, if that's what they are. 

most people here are American and it's a place I've wanted to visit for ever but I feel as though I have "travelled" to meet new friends here in a much more meaningful way than taking photos of beautiful houses in the south, or seeing the Statue of Liberty or the trams of San Francisco would have been. I have been graciously allowed into the private places in people's heads and while I would love to be able to describe those cultural differences I feel so keenly, it's so intangible it would be impossible. 

sorry this has turned into a rant and rave - move it, delete it, or whatever Moderators.

Syd

ps. I do have mental pictures of most of you - 

Yes I was talking about the biopsy. No need to scare anyone more about a colonoscopy lol. Let's put this in perspective as well, I was nervous, awake and much younger. 

Sydhanrahan wrote:

---

 And now I ask the question, in a very small voice, was the "harpoon" thing :eye popping: used for liver or colonoscopy? Gulp. 

---

 I think she was talking about the liver biopsy. According to this source those liver biopsy "harpoons" are 19-20 gauge.

I believe I remember you saying that you have had a paracentesis procedure done to evacuate ascites fluid? If so the needle used for that purpose is 15-16 gauge according to this source.

I've had a paracentesis done 3 times and every time the relief from the ascites pain was well worth the painful stick of the "harpoon". I suspect you might agree Syd?

Hi all, 

here I think MRIs are a bit like the Lord pointing his finger. You don't question who's been chosen or why. 

As for the liver biopsy you had Wendy - OMG!!!! And now I ask the question, in a very small voice, was the "harpoon" thing :eye popping: used for liver or colonoscopy? Gulp. 

syd

ps Harvoni

Hey RC, 

Glad you bit!, on the subject of discussing MRI's.

That was a very good, informative, thorough explanation you gave on MRI's ... (WITH contrast, please!). 

Now, tell me, just WHO gets them??, I have seen some people who are cirrhotics (compensating, or not), others with just plain ole fatty livers, others with high F kPa's, others with high risk for Ca, Ca suspected, Ca histories, Ca resolutions being followed, all kinds of other HCV related "megalies" in other organs being followed, etc. - there seems to be no rhyme or reason to who gets one, or not!

I have read (somewhere) a recommendation that ALL long-time chronic hep C people who have been cured, but, who have also had hep B in the past as well, "automatically" should be followed every 6 months via U/S and or MRI to watch for Ca changes, as that group is at "some higher" risk for Ca. Now ... factor in, additionally, other parameters (aside from just a history of having both B/C in the past), such as ... being a GT3a for 4 decades or so, having a fatty liver, and having a high F kPa .... just what ARE the hard/firm "rules" for what "condition(s)" justify the doc in spending money on expensive MRI's??

Pre-treatment the only imaging I had was one U/S. Pre-treatment I had 2 fibroscans, which jumped from F3 to F4 within the 6 months just prior to treatment.

I would appreciate being offered "follow-up" U/S's and fibroscans every 6 months post-treatment, but NO repeat post-treatment U/S's or fibroscans have been offered, even when I asked for a "post" repeat of these things! (It seems I will have to ask for this again at some point).

I would have been more than willing to have (both or either) a "pre", or a post-treatment follow-up MRI done, none had ever been discussed. Post treatment, I did ask about having an MRI, and the doc said he could not justify the cost?

So, what gives?, WHO gets MRI's, and why? - what are the risks or conditions that justify getting one?? What are the "guidelines", "rules" or "best practices".

It seems to me that the decisions to do U/S's, fibroscans, and imaging such as MRI's are applied unevenly, some are warranted, some are not?

Any further thoughts on MRI's anyone?  C.

um, maybe I should mention the word harvoni, as this is/was a harvoni thread?

Thank you all for your valued advice. It will help me when the time comes. Reality is now that neither of these tests have been ordered at this point but I just know they will / may be at some point so I was curious.

SF

Syd "...as the most recent orally/rectally probed member of the group,..."I just adore you. I had twilight sleep for day of endoscopy and colonoscopy. And yeah wha t a great feeling of relaxtion after that. Especially for someone with insomnia it was wonderful. 

My first liver biopsy was so many years ago, they did put you under twilight and cut you open back then. I have had 2 the way Lisa mentions and not a big deal. My mind makes it worse, seeing that instrument they use and the first time he goes, I didn't get a big enough piece gotta do it again and I saw a harpoon! Not the end of the world by any means.

Me personally; I'd take Syd and RC's advice on this SF. They are the more experienced members regarding this topic. 

Praying for the best outcome and decision for you.

wendy

I wasn't offered any narcosis for my biopsy of the liver. Just a local numbing of the skin. I felt it, but it was more a strange feeling than painful, and just an ache after. Also dentists here drill without injection because the pain stops as soon as the drilling which is quick - small fillings. 

The risks are far more with narcosis than the actual operations sometimes.

The only time I had real pain was the removal of my eggs during IVF. Due to Hep C I asked for a very reduced dose of Morphine, it didn't hurt after, but I think the Doctor asked me not to hit her! ;P

I am more scared to go to sleep than stay awake and feel something. It is not as bad as you think really. I've had a few operations with a local, and you do sometimes drift off, or just day dream away as with local you don't feel anything anyway. :)

Okay, as the most recent orally/rectally probed member of the group, Im going to add a bit here. Logic tells us that these new diagnostic tools are fantastic, emotion tells us that having stuff stuck in orifaces while we are unconscious, is horrifying.  Before the anaesthetist put the drugs in my vein he told me that I wouldn't be anaesthetised because for such a short painless procedure the risk of blood clots and having to have a machine doing the breathing, was no longer considered necessary. Then he turned the tap and I felt the cold creeping up my arm. i remember it getting to my neck and then became unconscious. I woke up like Canucks husband, feeling quite relaxed, even jovial. 

Im glad the polyp I had was removed and glad I know I have an ulcer. However, my grandma might have been an emu for I certainly like burying my head in the sand. (Sorry may be an Australian colloquialism meaning hiding from the truth.) even when I began going to see my hepatologist three years ago I never asked about results of blood tests and was deaf to her dire warnings about how sick I was. Now, coping with cirrhosis, treatment, waiting for the magic 12 weeks, is about all I can do. I don't want to go and find out I have something else wrong with me. I'm coping with as much as I can at the moment. Is that how you are feeling SF, or is there some other reason for not wanting procedures? 

MRIs, fibroscans, ultra sounds are not scarey - the fear of what you might be about to find out is. Even so, it's better to know than be in the dark. Especially when you stop seeing medicine purely as a science and realise that it is a business delivered on a budget by people who may have a headache that day, make a mistake, don't give a sx&$ etc.

Syd

I did want to add a few more anus references in this post, but sadly Ive missed that boat. 

Ok I half to chime in here on the MRI. W/WO contrast.  IMO anyone who has chirrhosis  should and must insist on contrast. All the imaging taken before the contrast is introduced shows the liver interior in a natural light.  Once the contrast is introduce the imaging starts to show the blood/contrast entering the liver and lesions will stand out.  With the contrast the liver lights up and shows blood flow to all the liver, including tumors.Then as the contrast washes out of the liver there are tell-tell signs the radiologist looks for to determine if the lesions are HCC.  I have looked through some of my MRI's  and have seen how the contrast clearly shows lesions that you could not see W/O contrast.  The amount of contrast is about 10cc. Really no big deal!  CONTRAST-CONTRAST-CONTRAST-   RC

It may come down to a difference between our definition of knocked out and that of the Doctor.

Example only when Carol had it done they said we don't knock you out. However she had no idea they had done it. Maybe a good idea to get a clarification?

Same thing when they replaced her eye lens. She was not aware of what was or had happened but was told she kind of told the Doctor off and everyone in the room. LOL No recollection at all.

JimmyK

Hey SF,

Seems apparent to me that your doctors don't knock you out for the endoscopy. I don't think I would agree to that without a fight either. Why can't you investigate the use of twilight anesthesia? That whole throat freeze, do it while you're awake thing, would put me off too.

As for the MRI, even if it's an older machine, they routinely put you in feet first for abdominal procedures. I just had two of them done. One head first and they turned me around for the abdominal. The new machines here are open in some labs, they even have windows!

Canuck

Ultrasounds are so easy-peasy, why not push for a repeat?? See, comparatively, how that fatty liver (and other organs) look now. (As well as pursuing your fibroscan).

Yes, I will have an ultrasound done every six months routinely. Regarding the others, I hate the though of the anxiety of it all and they freeze your throat as well and I am not keen on freezing. I did have a reaction to that many years ago so have steered clear of it.  38 years actually

I was literally talking to a friend right now about MRI's and he has had many for other reasons (12)  .. and My first concern is the contrast and I did read and understand that you can request or deny contrast and the images should be still good enough. Staying in there for 45 minutes is another thing and again, he went to a private clinic that was still covered under our health care system and it took around 20.

That's my story and I'm sticking to it.

SF

Agree with ya tig and linux,

Nowadays, endoscopic exams and colonoscopies are a breeze, (well most of it is, minus the bowel prep).

Well ... OK tig, in your case it was a VERY cool breeze.

Not that I have ever had a endoscopy myself (or a colonoscopy), nor could I ever honestly say I would ever want either one. But, I have witnessed a conscious colonoscopy - many decades ago - (can you believe that - conscious!) and oddly, it went suprisingly well, no idea on earth why they did not sedate him, but, he was wide awake alright, and cooperative!, I think the poor fellow was "practiced" at it.

I am, though, intimately familiar with all the new and old school colonoscopy preps, and agree the bowel preps, even nowadays, are not the fun part.

Not for the same health reasons any of us may have had to have GI scope work-ups, but my partner had both an endoscopy and colonoscopy done at the same time last year - it went extremely well, and boy, he was just the nicest, most cordial, pliable, jolly, calm, amicable, friendly, happy, satisfied fellow you ever saw for about 1 1/2 hours after the procedures were finished - he was on a VERY nice cloud 9 for a short time - the drugs really agreed with him!! Too bad that part didn't last, then.... it was back to his normal type A personality. Oh well. And he experienced no awareness, and no discomfort, at all, during, while they were biopsying his esophageal sphincter, nor any memory of either scoping event, and had no discomfort after the procedures either (he did not enjoy the bowel prep tho). 

His investment in submitting to a endoscopy paid dividends for him, based on what they found in his esophagus, he was prescribed some oral medications, and as a result of the investigation and subsequent therapy, now owns a gut that has not felt this good for many decades! Was so worth it, and as a bonus he experienced a pleasurable short drug ride.

Uh ... what does this have to do with Harvoni again? ... oh ya!, SF - his fault!, he brought it up! 

Hey, I have a good idea, now that we all know tig has an U/S machine at his house, we can all just go over there to get one done!  C. 

I agree that an Endoscopy is easy. Man o' man, the colonoscopy part of that test was no fun at all. Lots of good looking ladies in there and my hairy old butt was the first and only thing they got to meet. Not my best feature, especially wrapped or actually unwrapped in that hospital gown that might as well have a refrigeration unit built into it. Damn it's cold in those rooms! I'm glad all they saw was my butt....at least I'm hoping. The endoscopy is just a lie down, fall asleep via some IV Versed and you're awake as fast as you went out, no worse for wear. Little scope and you don't even know it was there. Now the poop shoot review, that's another story altogether. It starts with that really pleasant bowel prep and ends up with.... well, you know

I'm glad we can share these pleasant memories and encourage all of you to call your doctor and sign up for some medical memories of your own!

Hi SF,

I've had an endoscopy done a number of times and never thought it to be a big deal at all. I go in, they give me some knockout juice, I wake up and it's over ... easy peasy. I had to bring a driver ... (was laughing and cracking jokes all the way home).

I'm trying to figure out why you wouldn't want to get one.

Dave

Hi SF,

Ah, so that's a wee bit clearer ... in my book "the more you know the better", personally I would not be relishing the thought of an endoscopy either - just the thought of it and the trouble and bother it sounds like (I've certainly never had one), but boy, I would have no trouble laying down for some repeat fibroscans and repeat abd. ultrasounds as soon and as often as i could get them - IF ANYONE would darned well cooperate and bother to offer me one, even after I have asked for repeats! I'll keep working at getting  a repeat U/S and fibroscan one day.

I am glad you are making "plans" to obtain your repeat fibroscan. If nothing else, make sure you get one eh? You were too hi your kPa.

Ultrasounds are so easy-peasy, why not push for a repeat?? See, comparatively, how that fatty liver (and other organs) look now. (As well as pursuing your fibroscan).

Endoscopy, well, up to you, still falls within "better to know" than to not, if you do have any varices.

MRI's?, sheesh, some cirrhotics seem to be offered them rather routinely, why don't they offer all long-time/long-standing High F level folks them (especially us folk who have had both B and C)?, an MRI sounds not as distasteful or as hard to do as the idea surrounding an endoscopy. Maybe they do not offer MRI's just based on expense alone! But it seems the use of MRI's in us ARE justified on an" irregularly applied" basis! Man, overall, if you guess at the total time/labour cost of an endoscopy procedure, it has to be fairly up there too, compared with MRI's.

Endoscopy, looking for varices is a whole dif ball game, as far as intrusive and expense, but IT IS a useful telling test, and one which they easily offered up it seems!

At minimum, it would be good to follow/to sense some resolution of your hard fatty liver via relatively inexpensive non-intrusive U/S and fibroscan. I think, any "new" changes in a "repeat"  U/S, and the "comparative" results from a "new" repeat fibroscan, would be "some" info/feedback for you.

Any thoughts on the usefulness of MRI's at this stage?  C.

Hi Anna,

You can stay on the Train as long as you want! We started this thread for those starting Harvoni and people curious about the path ahead. It has morphed into a total package that includes so much information and support, I believe it's a good place for everyone to stay active in, if they choose to. Certainly if you want to select an existing thread in the Post Treatment section, or start a new thread, please feel free to do so. The Post Treatment section deals with issues affecting you afterwards, a place to share ongoing testing and to keep in touch with others that have finished.

Don't hesitate to post to the Harvoni Train after you have finished treatment. This is the go to place for members and guests alike, that are looking for firsthand knowledge on this protocol. How else will they find out if it isn't from the people that know it best? This is one of the most active and popular threads on the entire forum right now. The reason for that is because of the support and friendship everyone receives from our membership and people just like you!

Hey SF,

Normally, as a cirrhotic, an endoscopy is recommended and routine. They want to rule out or confirm the existence of varicies. I was diagnosed F3 and they did a biopsy, colonoscopy and an endoscopy over the course of a month, 8 weeks approximately before I started my last treatment. Might be something to consider for a baseline. Once you achieve SVR, the progression of most things stop, but that's not always a given, so some monitoring is prudent, depending on the individual  and their stage of disease.

I read the literature Jimmie posted today on the latest AASLD treatment guidelines and I see they are now recommending 6 month ultrasounds for F3's and up now for HCC monitoring. That changed to the best of my knowledge. It was a recommendation for F4's previously. I think that's going to be a question directed to our physicians. An ultrasound is easy stuff, so we can all find the time for that. I have one here at home, so I have no excuse whatsoever!

singsong wrote:

---

Checking if there is proper protocol. Are we on the train until SVR, or at EOT?  I'm enjoying the ride.  Nice folks getting off and on the train as it moves along - just curious.

---

 Hi Singsong,

It was my understanding that we are on this train while on treatment and then we can move to post treatment based on the thread name.  Of course that is carved in Jello

Canuck wrote:

---

Hey SF,

Just getting back to this MRI/endoscopy thing. Is it because your docs have never offered/ordered/suggested either of these tests for you, or, have they indeed been suggested/recommended for you, but you are reluctant, don't look forward to having them, don't care to have "those kinds" of tests done, that you have never had them done?? Just curious (and real nosy eh!). Just ignore me as necessary. ha!

Also, save me looking again - I forget what you said about "when" you will get your next fibroscan - did you say it was not "booked/planned", but that you would want one (you were going to ask for one) after a period of time??  C.

---

 Actually the specialist at the hospital in January said I should have an endoscopy and I said no so he wrote on his notes back to my specialist that he would expect that he would follow up as required with that. My Dr. would certainly do the procedure. He never mentioned it and I did not either so you are correct. I really don't want it done right now and I know that might be a really stupid thing but hey..

Regarding the MRI .. It was never mentioned by anybody every. I figured if there was something on my ultra sound that needed more investigation then that test would be ordered.

The Fibroscan .. No it has not been ordered, it was spoken of and I would expect at the end of year one. That being said, my NP is just about finishing opening her own clinic about 10 minutes from me and she definitely does them. I touched base with her on that but again, we shall see.

Sorry I did not see this until today. How are you doing? If easier and you have posted and I don't see it  please put the link so I can be updated.

I hope you had a great weekend.

SF

SinsSong, You earned your seat on this train. This is my wish for you---That you scratch your name on the back of the seat in front of you on this train, to show those coming behind you that you were there, you got cured- and they can too!  RC

Checking if there is proper protocol. Are we on the train until SVR, or at EOT?  I'm enjoying the ride.  Nice folks getting off and on the train as it moves along - just curious.

 I agree that you should question why you are being treated with only 12 wks Harvoni.  I was a previously treated, geno 1a, with cirrhosis, and I was cured with 24 wks Harvoni (without ribavirin). Your platelets and enlarged spleen should improve once the Hec C is eliminated although it can be a slow process. You are on the right track staying adequately hydrated and getting your rest. If you are taking ribavirin then that explains the fatigue. Please create your own signature to let us know more about your treatment etc. Welcome to the forum Teresa!

Hey SF,

Just getting back to this MRI/endoscopy thing. Is it because your docs have never offered/ordered/suggested either of these tests for you, or, have they indeed been suggested/recommended for you, but you are reluctant, don't look forward to having them, don't care to have "those kinds" of tests done, that you have never had them done?? Just curious (and real nosy eh!). Just ignore me as necessary. ha!

Also, save me looking again - I forget what you said about "when" you will get your next fibroscan - did you say it was not "booked/planned", but that you would want one (you were going to ask for one) after a period of time??  C.

Stormy,

Sorry for the way you are feeling. Not nice, at all, these symptoms of extreme fatigue and nausea. You are doing all the right things, trying to rest while your body does battle, and reaching out for help and advice. Your symptoms are most unwelcome, at a time you that you are doing your very best to get well, unfair you have to contend with these extra penalties. Small saving grace that you do not have the headaches, one small good thing, you must be doing a good job of remaining well hydrated, or are just lucky in the headache dept. You have not had an easy go of it, enduring past treatment failure. The alopecia thing is very disconcerting as well, isn't it - I too, have experienced a bit of this, but it was not "during" treatment "per say" (I was on a dif. drugs than you). My alopecia kinda crept up on me over the last year or two prior to treatment, it has remained about the same during treatment, but I blame the alopecia on my overall stressed health. I believe my body, carrying C for over 40 years, was really becoming stressed (and showing it), especially in this last decade, and especially these last couple years, prior to diagnosis and treatment. The stress on my health showed, in many ways, including developing alopecia. I can only hope, with me eventually regaining my health back, in full (post-treatment), that many of my prior symptoms will now start to improve. Alopecia is an especially cruel extra little insult to have to contend with on top of everything else, isn't it. But you, unfortunately are also dealing with the uncomfortable and very disconcerting throws of fatigue and nausea. My fatigue is slowly improving post-treatment BTW

Your body sounds like it has been battling/stressed for a long time now, what with having hep c for a long time, a prior failed treatment, being F3, your spleen and pancreas complaining, and low platelets - all of these can account for how unwell you are feeling, I would guess some of todays symptoms are likely a result of your overall health conditions and perhaps not just related directly to sides of Harvoni.

I am so glad you are finally started on drugs that will be effective in wiping this virus out of your body, so you can begin to regain your health.

I agree with Tig and Jimmy, we ALL want to make sure your drugs, which are good enough, are long enough, what with your history.

So sorry the nausea and fatigue are horrid, I hope it soon abates. I am assuming you are only taking sof/ledi (Harvoni), alone, with no Riba? If so, then perhaps being that you are in your 5th week of treatment, maybe some of these symptoms may start to turn around as the VL, and your ALT/AST crashes? 

Did you get a 4 week VL?, and what are (were) your Alt, Ast, bilirubin, glucose, iron, hgb levels?? You mentioned low platelets only, and that you stopped eating animal meat, was that what the doc thought you should do?

Let us know how you are feeling, and any other labs you may have.

Hang in there, you are doing thee most important thing possible for yourself - killing this virus. C.

Greetings Teresa,

I absolutely share Tig's comments. Your treatment plan should be Harvoni straight no RBV and for 24 weeks.

If by chance you are taking RBV that can account for the lions share of your current issues.

See below.

In my prayers! ;)

Hi Teresa,

Welcome to the forum! Congratulations on getting started on treatment. I'm surprised you're only doing 12 weeks though. With the advanced fibrosis and multiple treatment failures, why did your doctor decide on the 12 week protocol? I would seek some answers and see what you can find out. When did you have your last fibrosis staging and what tests were done to determine it? The lowering platelets, enlarged spleen and pancreas are indicative of advancing fibrosis/cirrhosis.

You mentioned Harvoni, are you also taking Ribavirin? If you could add some information to a signature line, it will help people understand your history and allow us to follow your progress when replying to future posts. Use the red link in my signature line for instructions, if you need them. You will see the info others add, it helps.

If you have any questions, please ask. Keep up the hydration, that's so important! We have a good ginger ale recipe in our nutrition section that will help with the nausea. I had to use a prescription called Zofran when it got real bad. Be sure and ask your doctor for help. You need to be able to eat and hydrate without fear of the nausea/vomiting. You'll avoid them when you feel so poorly. Stay in touch, we're here to help!

I think its better to know what you're up against than not. I know one member had a fatty liver and managed to reverse some of it by changing his diet. I have read so many stories over the years, and one thing that has become my truth is, resolve it before it becomes a problem, if possible. I hope you take the test. At least then you can have some control over the disease rather than wonder. Maybe I am just a control freak! ;)

SF I am going to join my brothers and sister here and agree that it is better to just do it. Why lay in bed and wonder and i know darn good and well you will.

Peace of Mind in and of itself has great healing qualities.

Jimmy

My hope is that at the 12 week EOT appt you and the doc discuss the MRI. 

Hi S.F.

    For years they told me I had a fatty liver, little did I know it was chirrhosis showing up at the party In my liver!!   Your Dr. Should have informed you.You have every right to know your condition now.   If fatty liver was mentioned then you really should get the MRI soon. HCC ain't no fun.  RC