Hep C Discussion Forum

Milliganus · Senior Member

RE: My first post...

Angel67 · Senior Member

Bombeni wrote:
I have a phobia about needles. The only way I can do a biopsy is if they knock me out. I just hope I find a doctor who will just treat me with the new drug when it's available. I'm really sick. I've put this off for a long time but hopefully not too long.

I wish I had a fear of needles....I wouldn't be here if I had!

pizzacake · Veteran Member

Please do not wait. Compared to end-stage liver disease, a fear of needles, is nothing. Honestly get a good gastroenterologist this week.

wmlj1960 · Moderator

Bombeni wrote:
I called gastro docs for an appt and I have to go thru my primary doctor. Theres a bit of red tape, might be a couple of weeks or more to get in but I've gone this long, a few weeks shouldn't matter.

i read that tiny blood marks are a sign of hep c. I've had those all over my torso for ten years, and I've asked different doctors about them at least 5 or 6 times and they all said they were nothing. I wonder how some of these guys ever became doctors.

What Duane said:...

I personally would suggest not waiting. When I hurt bad enough to know I really needed help I went straight to the ER. Otherwise I would have had to wait on all the red tape crap. I'm like Duane, I didn't get help until a lot of damage was done, but unlike him, I knew I was bad, and I still postponed getting help until I felt like I was getting really bad.

Well. come to find out I was really bad and much worse than I felt like I was and it's a good thing I got help when I did... not weeks later.

If all things were known, I may be able to attribute my being alive today to a simple drive to the ER, no ambulance or help needed, with me looking on the outside like a normal healthy person but with not much of a smile on my face.

Go Today Robbie! You've gone this long, but a few weeks could matter big time. JMO smile

Huey · Guru

I be leave it was from a sewing needle, you see my mother was a Seamstress, She learned this from the war. She worked in a factory making uniforms. anyway she would often stick herself, and so would i, whenever i tyred to help. But I was also changing bandages, and I bit my nails quite a bit, So if my fingers were bleeding, ,Something like this,

Bombeni · Member

Hi Huey, I'm going to ask if I can go the needle-free route, but I'll do whatever they feel is necessary to treat me.

How did you get hep from your mother if you don't mind me asking?

Huey · Guru

Extrahipatic manifestations, This is the virus getting into other kinds of tissue and reeking havoc . Different geno-types tend to have this happen if many different ways, Mine was my toenails, got a black roit under the nail and could not get it to heal , Till now, Now it is clear on one toe and the other half way, My mother had this too,[fyi , my mother is ware I got the hep-c from]. Doctors in the past have not been given guidance from the CDC and that is why hep-c is one of the most under treated illnesses today..

Huey · Guru

Bombeni wrote:
I have a phobia about needles. The only way I can do a biopsy is if they knock me out. I just hope I find a doctor who will just treat me with the new drug when it's available. I'm really sick. I've put this off for a long time but hopefully not too long.

Your Doctor can use the liver function test to make a good enough guess to get you the needle free treatment if you qualify, witch you do I am sure, The only reason I did the biopsy is they were there taking out my bladder anyway. And It is not over yet I have to go back and get this Stint they put in be out Oct.3ed,

Bombeni · Member

I called gastro docs for an appt and I have to go thru my primary doctor. Theres a bit of red tape, might be a couple of weeks or more to get in but I've gone this long, a few weeks shouldn't matter.

i read that tiny blood marks are a sign of hep c. I've had those all over my torso for ten years, and I've asked different doctors about them at least 5 or 6 times and they all said they were nothing. I wonder how some of these guys ever became doctors.

Bombeni · Member

Yeah me too!

Dzdayscomin · Senior Member

A good GI doc will work, but I think you mean hepatologist those are the ones that focus on treating liver disease.

I'm glad we here are able to help coax you into getting care quickly!

Good job! And best wishes.

Bombeni · Member

Dzdayscomin--

I'm calling Monday for appt. I can't find a hematologist listed for this area so will call a gastrointestinal doc.

I feel lousy a lot of the time but I think I'm lucky it's not much worse considering all the time I've wasted.

Bombeni · Member

-- Edited by Bombeni on Sunday 7th of September 2014 03:38:38 AM

Dzdayscomin · Senior Member

Bombeni wrote:
I have a phobia about needles. The only way I can do a biopsy is if they knock me out. I just hope I find a doctor who will just treat me with the new drug when it's available. I'm really sick. I've put this off for a long time but hopefully not too long.

When you say you are really sick...can you elaborate on the symptoms you are experiencing.....this is nothing to fool around with, there are symptoms that may require you to act NOW! If you've had this for 40 yrs as you suggest you may have some things that need to be brought under control very quickly. I recall you saying you have great insurance. ....well it's time to put it to use.

I cannot imagine what or where I'd be now if I hadn't started to deal with this disease immediately when I found out.

There is only support here, not the care you need.......if you have fluid building up (acites, edema) or are experiencing cognitive issues like memory or lethargy you need to be seen ASAP, also diet needs to be adjusted, and lifestyle changes have to occur now.

Time to put all your fears aside if you want to live and just go in, if they say it's months or weeks to be seen go to the ER , when someone knows they have an illness that can take your life I would think that would be more fearful than a couple needle sticks......or you could look at it this way, if you act now how many procedures may you avoid? Not to be harsh but if you could choose a curable infection in your finger, or an amputated finger because you didn't act which would it be?

Like I said I don't want to come off harsh, but I wish I would have had the option many yrs ago to choose....I wouldn't have cancer or be waiting for a transplant....A biopsy seems pretty minor when you look at it that way huh?

Just trying to push you to care for you.....be strong, that's where we can help here!

Good luck I hope next week we hear your on your journey.

Duane

Bombeni · Member

I have a phobia about needles. The only way I can do a biopsy is if they knock me out. I just hope I find a doctor who will just treat me with the new drug when it's available. I'm really sick. I've put this off for a long time but hopefully not too long.

Huey · Guru

Tig56 wrote:
I had three biopsies, two percutaneous and one laparoscopic. Didn't hurt much. Tender for a day afterwards but that's about it. The worst part is listening to people tell you how bad theirs was. Do your best to not get psyched out and start expecting lots of pain and discomfort. If you go looking for bad experiences, you'll find them. Mine were uneventful. It's not that big of a deal and is over before you know it. Go to a good, qualified doctor and facility and have trust in your health care team.
Tig

I can agree with Tig, You don't won't to cause a negative placebo effect by over-thinking it, What is important is to have someone when you go home be with you for a good long wile after and that person ready to get you to medical care if needed right away. Just in case your robot hits a blood vessel in your liver like mine did. I have a senor Brother that lives with me disabled ,and I have leased a room to Dave, He pays his rent by taking care of us. Our caregiver. Having this in place is what saved me.

Isiscat2011 · Guru

Gator Man wrote:
If you trust your doctor and hopefully most of us do, ask questions, be informed, but try to not let fear of the procedure override their advice. What happened to Huey demonstrates that serious problems with biopsies can occur. A good doctor should weigh that risk versus acquiring sufficient and accurate results to recommend the best course of treatment.

Good advice but it overlooks the fact that most HCV patients are being treated in community based practices where the doctor simply orders a liver biopsy which is then performed at a hospital. These docs do not have a "team" they are consulting with as do docs at university/teaching hospitals. In fact, many HCV patients rarely see their docs; they see the nurse practitioner.

My first doc was board certified in Internal Medicine and Gastroenterology with a 2 year advanced fellowship in Hepatology. He was Harvard trained and a former faculty member at Harvard Medical School. He was extremely smart and also a nice guy. His practice was not, however, geared towards HCV tx and this is the norm not the exception. He was a good doctor but he had very little to do with the actual biopsy.

Huey · Guru

Dzdayscomin wrote:
Ok im sure that scared the begesus out of Robbie, it is possible you may not need a biopsy, I have never had one because thru blood tests, imaging, and symptoms I had it was pretty clear, they saw no benefit and with platelets as low as mine 40's the bleed risk was to high.
Take it one step at a time, if you are really scared talk to the doctor im sure they can do things to reduce the pain if needed.
Just start with the labs and see where it leads and talk to them about your fears and anxiety, knowledge is power...the more you know the stronger you are able to be.....also there is something to be said with proving to yourself you can handle it, and keep in mind the liver doesn't actually feel pain its more the stuff around it, but Mallini can explain it much better.

The only reason I did the biopsy is because I was getting my gallbladder out anyway, SO wile they was there , However if not for that, I would not have had it done.

Gator Man · Senior Member

I've had two percutaneous liver biopsies. With the first one, I sat in a chair while the biopsy needle was inserted between my ribs. Not the way to go if you have a fear of needles. I don't and declined a sedative, The only problem was I discovered I am allergic to surgical tape. For several weeks after the exam, I had nasty looking ulcers where they applied the pressure dressing. No soreness or bleeding from the actual insertion.

The second exam was a CT guided biopsy and I was fully sedated. My doctor spent some time explaining that he preferred a biopsy over a Fibroscan, even with the inherent risk with the former procedure. As I mentioned in previous posts, he emphasized that the radiology team and him were in sync as to how to achieve the best results for analysis. My only complaint was I had to wait two hours to get a wheelchair to discharge me from the hospital. Again, no soreness or bleeding.

If you trust your doctor and hopefully most of us do, ask questions, be informed, but try to not let fear of the procedure override their advice. What happened to Huey demonstrates that serious problems with biopsies can occur. A good doctor should weigh that risk versus acquiring sufficient and accurate results to recommend the best course of treatment.

Mugsy · Senior Member

I want to assure you that I did not candy coat my reply concerning my biopsies. They were both guided by ultrasound and fortunately, uneventful. But I was 7 years younger and healthier. As with anything, you need to educate yourself to be able to make your decision. Members here have used a Fibroscan ultrasound type procedure. Maybe that is an option?

Isiscat2011 · Guru

Tig56 wrote:
If you go looking for bad experiences, you'll find them.

I have to disagree with that. Being aware of risks as well as benefits doesn't mean we are looking for bad experiences. Nor does it make us "negative" people. Likewise, knowing that there can be medical complications certainly doesn't cause them to happen.

Might as well be realistic, IMO, and realistically the odds are very good of having a liver biopsy without complications and with tolerable, transient, pain. Fact is, however, it is an invasive procedure and it isn't always without complications. We have a choice as to whether or we want it. If there is an acceptable alternative (and there almost always is) we have the right to know about that too.

I'd have another one if it was necessary but this time my consent would actually be informed.

Tig · Admin

I had three biopsies, two percutaneous and one laparoscopic. Didn't hurt much. Tender for a day afterwards but that's about it. The worst part is listening to people tell you how bad theirs was. Do your best to not get psyched out and start expecting lots of pain and discomfort. If you go looking for bad experiences, you'll find them. Mine were uneventful. It's not that big of a deal and is over before you know it. Go to a good, qualified doctor and facility and have trust in your health care team.

Tig

Dzdayscomin · Senior Member

Ok im sure that scared the begesus out of Robbie, it is possible you may not need a biopsy, I have never had one because thru blood tests, imaging, and symptoms I had it was pretty clear, they saw no benefit and with platelets as low as mine 40's the bleed risk was to high.

Take it one step at a time, if you are really scared talk to the doctor im sure they can do things to reduce the pain if needed.

Just start with the labs and see where it leads and talk to them about your fears and anxiety, knowledge is power...the more you know the stronger you are able to be.....also there is something to be said with proving to yourself you can handle it, and keep in mind the liver doesn't actually feel pain its more the stuff around it, but Mallini can explain it much better.

wmlj1960 · Moderator

Isiscat2011 wrote:
And, I might want to see ROBO-DOC's maintenance schedule too! When was the last time ROBO-DOC had a check up? :)

In Huey's case: evidently not since 'date of manufacture'.

Isiscat2011 · Guru

Huey wrote:
I spent 3 days in ICU from one. and Yea it heart.

Yours was very rough, Huey, and we have seen even worse here. It isn't my intention to frighten anyone because the overwhelming majority of liver biopsies are fine but, IMO, it is unfair to mislead people. It is an invasive procedure that carries risks. Sometimes, however, it is necessary to do it. Patients should be allowed to knowingly weigh the risks and benefits for themselves, but in most cases, your medical provider spends less than a minute telling you about it.

I have learned since then, however, to ask more questions. For example, I would not consider letting some random doc perform the procedure; I'd meet the guy who was actually performing the biopsy beforehand. I'd also find out what type of drugs they were planning to use and a few other things.

Also, after seeing what Huey went through, I would not consider sharing an O.R. with ROBO-DOC unless the doc who is operating him had performed the procedure at least 100 times before using DaVinci. And, I might want to see ROBO-DOC's maintenance schedule too! When was the last time ROBO-DOC had a check up? :)

Huey · Guru

another question: does the liver biopsy hurt?

If you wake up after and you are still in so much pain that 2 Oxycontin don't even numb it,, GO BaCK.!!

I spent 3 days in ICU from one. and Yea it heart.

Mugsy · Senior Member

It's scary when you are first diagnosed and do not know much about this disease. There are so many different people on here who have wonderful information to help us along the SVR path plus there is all the detailed info on the home page. Do not hesitate to ask questions; people here are very kind.

And I have had two biopsies and neither hurt as I was pretty much out of it on Versed( I think another name for it is conscious sedation)! And the day after I felt a little sore, but nothing that needed any medication. Just take it easy the next day, no lifting, no jogging or heavy exercise.

Isiscat2011 · Guru

Bombeni wrote:
another question: does the liver biopsy hurt?

_____________________________________________________________________________________________________________

For some it does and for others not. I'm sure it depends on the doc, and what drugs they use, and a few other things. Mine hurt like heck, but it was quick, like being stabbed a few times. (Not that I've ever been stabbed a few times but what I would imagine it would feel like.) I remember saying "HOLY F**K!" and "OUCH" during the procedure because, not only did it hurt, but it kind of surprised me how much it hurt.

Afterwards, I had intense shoulder pain for a few hours. They kept me at the hospital for several hours. I went home with some pain pills and was fine within a couple of days.

I had mine done at at a hospital and some random doc performed it. At first it was scheduled with a PA unbeknownst to me (yes, non-docs can perform this procedure in many states). I said I wanted a physician to perform it so, while I was on the table, they pulled in some random doc who happened to be available. They must have found him wandering the halls or hanging out at the nurses' station. lol When I told my new hepatologist about this experience he wasn't surprised, but said that this procedure should not hurt, and that if he had performed it there would have been no pain.

People have some horror stories about liver biopsies because they do happen--mine was comparatively mild--but most are performed well and with little pain.

Bombeni · Member

Thanks everyone, for the info and advice, the links etc. I have a lot of catching up.

another question: does the liver biopsy hurt?

-- Edited by Bombeni on Saturday 6th of September 2014 02:12:33 AM

Isiscat2011 · Guru

Huey wrote:
Well i do a lot of good things , for people and in general I am non-evel So I have good karma too.
I am blaming it on karma.

smile But good things do happen to evil people and bad things happen to good people. I suppose Karma could be waiting for us in our next life. I'd prefer it if Karma was a little faster. Instant Karma. BAM!

Huey · Guru

Well i do a lot of good things , for people and in general I am non-evel So I have good karma too.

I am blaming it on karma.

we are all in this together , Keep your stick on the ice, 'Red Green Show'

Isiscat2011 · Guru

Huey wrote:
I got treatment and got it before any biopsy , only blood test, and I think it was because I was on top of it and got in treatment before any guidance was issued.

You also got lucky. A different insurance company, a different doctor, etc. and you may not have gotten tx.

People like to think that good things that happen are due to their own efforts but bad things are due to bad luck. The truth is it is all due to both effort and luck.

The luck factor will continue to play a role in who gets tx and who doesn't--as well as who SVRs and who doesn't.

Huey · Guru

Isiscat2011 wrote:
Bombeni wrote:
I'm waiting for, that new magic pill with a 98 percent cure rate.
I would like to hear more advice regarding whether insurance will pay.
For the US, the AASLD has issued guidelines for who should be treated first. Patients are prioritized based on their need for tx. Here is a link that discusses the guidelines in detail:
http://hepcfriends.activeboard.com/t58318398/updated-treatment-recommendations-from-aasld-11th-aug-2014/
Essentially, if you have substantial liver damage or very serious extra hepatic manifestations (non-liver related HCV caused health problems) you will be treated first. Note that these are just guidelines and it is certainly possible that doctors will try to treat less serious HCV patients right away. The question is whether insurance will pay for the lower priority patients to treat now. IMO, for anyone who doesn't have substantial liver disease, it will continue to be a lottery until there are significant drug cost reductions. Some will get tx and others will not.
As to the 98% cure rate that is not a realistic outcome expectation for most people. The drug manufacturers like to throw out stats that don't tend to play out in the real world. Also, the rate of SVR depends on a number of factors including the state of your liver, your genotype, whether you have treated before, etc., etc. Don't get me wrong, the all oral DAAs appear to be a vast improvement over what was available in the past, but perfect they are not.

I got treatment and got it before any biopsy , only blood test, and I think it was because I was on top of it and got in treatment before any guidance was issued.

mallani · Guru

Hi and welcome Robbie.

Let us know when you find out your Viral Load and Genotype. You will need a full liver assessment, including a biopsy and/or Fibroscan. When we know those details, we can advise you further. Cheers.

Isiscat2011 · Guru

Bombeni wrote:
I'm waiting for, that new magic pill with a 98 percent cure rate.
I would like to hear more advice regarding whether insurance will pay.

For the US, the AASLD has issued guidelines for who should be treated first. Patients are prioritized based on their need for tx. Here is a link that discusses the guidelines in detail:

http://hepcfriends.activeboard.com/t58318398/updated-treatment-recommendations-from-aasld-11th-aug-2014/

Essentially, if you have substantial liver damage or very serious extra hepatic manifestations (non-liver related HCV caused health problems) you will be treated first. Note that these are just guidelines and it is certainly possible that doctors will try to treat less serious HCV patients right away. The question is whether insurance will pay for the lower priority patients to treat now. IMO, for anyone who doesn't have substantial liver disease, it will continue to be a lottery until there are significant drug cost reductions. Some will get tx and others will not.

As to the 98% cure rate that is not a realistic outcome expectation for most people. The drug manufacturers like to throw out stats that don't tend to play out in the real world. Also, the rate of SVR depends on a number of factors including the state of your liver, your genotype, whether you have treated before, etc., etc. Don't get me wrong, the all oral DAAs appear to be a vast improvement over what was available in the past, but perfect they are not.

Dzdayscomin · Senior Member

That is a very broad question, but again it depends on how much damage is done, if the patient is not cirrhotic I would think yes as liver function would improve and regenerate.

Once the organ is unable to do its job or regen some symptoms will be there, but it's different for everyone.

Bombeni · Member

I'm making an appt next week.

edit to say thanks, I feel better already meeting all you nice people.

-- Edited by Bombeni on Friday 5th of September 2014 11:49:09 PM

beingsassy · Senior Member

Welcome to the forum. I too buried my head in the sand for a good 20 years because of interferon. I am waiting at this point to see if the drugs I was on have cured me. From other members, I've learned that you will feel better after being cured and I hope that's true in my case. I know that I still have some fatigue but that is probably from the ribavirin which can stay in the system for awhile after quitting it.

right now the biggest concern of yours needs to be following up with the advice you've already been given and see a specialist, have the usual liver tests and discuss treatment. if I never get rid of the fatigue I'm okay as long as I get rid of the Hep.

Take care and get to the doctor. That may be scary but not as scary as not knowing where you're at with this disease and what you need to do to take care of yourself. The new drugs are miracles so reach out and grab your Miracle.

gigi

Bombeni · Member

I have a question. If a person has had hep c a long time and achieves a cure with the new drugs, would they feel better? Or will they always feel fatigue etc from the liver damage that has already occurred?

Dzdayscomin · Senior Member

Please go get this going with your doctor, don't worry about shame or anything else just do it...your life and the quality of it depends on it.

Like many here have said it does not matter how you got it, Drs don't care either unless your lifestyle now affects the ability to treat it.

We are all here for the same reason we have or had HEP C we want you to be a "HAD" no judging here just support.

Gator Man · Senior Member

SOC tx refers to standard of care treatments, generally for Hepatitis C as used in this forum. Until recently, the SOCs for genotypes and stages of fibrosis had interferon as a component, but that is in the process of change. Isiscat's post links a thread which shows the tx options for DAA (direct acting antivirals) that will become available starting October 10th and rolling out into next year. The hope is that interferon based therapies will become a thing of the past (cost and availability of the new DAAs world wide is another issue) and that we will have a single pill taken for a short duration that replaces 48 weeks or more of misery.

For future reference, there is a sticky at the beginning of the New Member's area that lists all of the abbreviations you will likely see as you peruse the forum.

-- Edited by Gator Man on Friday 5th of September 2014 10:23:46 PM

Bombeni · Member

I don't know the specifics besides just being positive for hep c. I'm 58 and most likely have had it almost 40 years. I didn't go back for further tests. As I said I just buried my head in the sand.

What is soc tx?

Dzdayscomin · Senior Member

The tx's are available right now in the US, the biggest issue you will be up against is the state of your health, and severity of damage done as to what tx protocol you will be able to receive,if you have an idea of how long ago you were infected it will tell a lot about the progression of damage done to your liver and how rapidily you may need to treat, in my case 30 yrs not knowing did a serious number on me because I was a pretty big beer drinker all those years not knowing I had it and was exacerbating the problem. So another way to figure that is age...if you are younger regardless how long you've had it the damage will be less.(in most cases)

But if this makes you more confident of the success rates look at my sig line...I'm cirrhotic to the point im on the transplant list yet I am now Hep C free, if able waiting just a short time may make you eligible for probably what will be the SOC tx this fall with very minimal side effects.

Really there are so many very smart and supportive people here that if you share your diagnosis in your sig line they can really help you understand and navigate the process.

Good luck and welcome.

Bombeni · Member

Hey thanks isiscat, our posts crossed, you answered some of my questions. ill read the info you sent.

Yes im im going to schedule with a specialist very soon.

Bombeni · Member

Thanks for replying Gator. thats what I'm waiting for, that new magic pill with a 98 percent cure rate.

I would like to hear more advice regarding whether insurance will pay. Is it just an unknown/undetermined at this point? I have very good insurance coverage. I do realize the cost is sky high. It's examples like this when capitalism doesnt work so well. If a cure is found for any disease it should be easily available to anyone, but I digress.

Is it definite that it will be available next year in the US?

Isiscat2011 · Guru

Welcome Bombeni:

Putting one's head in the sand in difficult situations is a very natural defense mechanism; shrinks call it "denial." lol Gator Man has given you some good advice which is to find a specialist who has HepC tx experience and get your liver damage assessed via a Fibroscan or a liver biopsy. The doc will want to do some other tests like blood work, possibly an ultrasound, etc. That is the first step.

An all oral combo (Sovaldi-Ledipasvir) is scheduled to be FDA approved on October 10, 2014 and several other all oral combos are close behind. This is the perfect time to begin to look into your tx options. Here is a thread that discusses the anticipated upcoming FDA approvals for hepc tx drugs.

http://hepcfriends.activeboard.com/t58345826/daa-combos-fda-approval-status/

I'm so glad you are here. You will find plenty of useful information and support.

Gator Man · Senior Member

Hi Bombeni and glad you found our forum. I would strongly encourage you to return to your doctor or find a hepatologist or gastroenterologist familiar with Hep C tx. Whether or not you need to treat now or can wait depends on the degree of liver fibrosis that you currently have. In addition to lab results and a physical exam, a knowledgeable doctor will have you undergo a liver biopsy or Fibroscan test to accurately evaluate your stage of liver disease.

There are interferon free Sovaldi based treatments that are available in the U.S. By early next year, we should have a single pill, once a day tx available as well. The medications, particularly the interferon free combos, are extremely expensive (~$1,800/day) and whether insurance will cover it now or have you wait will be dependent on the severity of your liver disease.

It is an exciting time to be "hyped" about the tx spectrum. It has all changed in the last year and given us hope when many of us had previously buried our heads in the sand as well.

I would also encourage you to share your diagnosis with supportive family and friends. How you got here doesn't matter. Everyone's story is different, but we all are in this fight together.

Good luck and keep us posted.

Bombeni · Member

Hi All--

i was was diagnosed a year ago, but haven't seen a doctor since. I know, stupid right? I just kinda thought well there's no way I would take interferon from the stories I've heard so I just hid my head in the sand. Now I've seen articles about a new drug that is much easier and has a high cure rate. But I can't determine, is it available in the US yet? From what I can tell it's still awaiting FDA approval.

I have so much to learn, so happy to find this forum. I want to face this thing now. I haven't told a single person yet. I'm very hyped after reading about this new drug.

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