Author Topic: just found out (Read 34389 times)

lifechanger · « **on:** January 16, 2015, 01:19:24 pm »

I just received a call from my doctor saying i have hep c, so overwhelmed....waiting for ultrasound and apt with specialist should i be doing something now??? What should i be expecting??? Have been reading everything i can on the internet, and am terrified...ugh, i hate not knowing...

badbradley · « **Reply #1 on:** January 16, 2015, 08:35:50 pm »

lifechanger,
Sorry so long for a response. I will never forget that terror. Fortunately, it's a different day today with the new treatments/cure rates. Coming to this forum is the best thing you can do for yourself at this point. There is a lot to be learned and you will learn more here than anywhere else. There are a lot of smarties here that can give you direction and are very generous with their support and knowledge.
Know that you are not alone! We're here to help. Sorry this has happened to you. 75% of people with HCV don't even know they have it! Feel fortunate that you know and can now take action. Best wishes on your journey.
Brad

Katie · « **Reply #2 on:** January 16, 2015, 08:42:12 pm »

Hi lifechanger...and it is. Sorry for the diagnosis, but with the new breakthrough in treatment, it is no longer a life sentence. That has changed in just the past year or so.

What you need to have done if you haven't already, is have your viral load checked and most important your genotype. There are many different genotypes but 1a is the most common in the US and up until 2013 there wasn't a good treatment for it. Before that, the cure rate was extremely low and the side effects were terribly with a 12 MONTH treatment that many could not tolerate. This past October even more improvements were made with Harvoni and the cure rate is close to 100% and it is 1 pill a day for usually 12 weeks depending on your condition. Another wonderful thing is this forum, so you have lots of support and info from people who know exactly what you are going through.

There is lots of information on this forum and if you click on my name and my posts you can scroll through it to see some of what I have written for other newbies (look for the long posts) or just investigate and you will soon find you are relaxing a bit and not feeling so alone and scared and confused. There are many who are even more informed than I am and I have researched a lot so utilize us as a resource and then GOOGLE and check for yourself going to good medical or hepatitis sites.

I will say, get as informed as much as possible so you know the right questions to ask your doctor and insurance co, stand up for your self and become pro active. It feels good to be in control and make your decisions based on fact instead of emotion.

If you have any questions, be sure to post them and you will see you have lots of friends on this site.

Good luck to you,

Katie

badbradley · « **Reply #3 on:** January 16, 2015, 08:50:23 pm »

Katie is definitely one of the smart ones! You ROCK Katie. Thanks for response.
Brad

Katie · « **Reply #4 on:** January 16, 2015, 09:24:38 pm »

You are too kind, Brad. Not smart, just have had 9 years to research this and as a biologist it is just in my nature.

badbradley · « **Reply #5 on:** January 16, 2015, 09:44:30 pm »

Quote from: Katie on January 16, 2015, 09:24:38 pm

You are too kind, Brad.

Careful with the accusation. I've got an image to protect here!!
BAD Bradley!

Katie · « **Reply #6 on:** January 16, 2015, 10:08:22 pm »

Bad Brad? Ha!

Are you still in treatment Brad? Where are you at?

Katie

badbradley · « **Reply #7 on:** January 16, 2015, 10:20:35 pm »

Katie, I ended treatment with S/O on Nov. 10th. I am undetected as of end of treatment. I opted to skip the 4wk post treatment test. 12wk SVR test will be on Feb 3. I feel great at this time. Knock on wood! Sounds like your doing pretty good with treatment. You have such a positive attitude. It's nice reading your posts.
Brad (I mean BAD brad)

Katie · « **Reply #8 on:** January 16, 2015, 11:01:41 pm »

Good for you! I am so excited about this treatment for you, for me and everyone.

I watched and waited and kept my fingers crossed. I had quit drinking a couple months before I was diagnosed as it made me feel terrible for a couple days, never did many pain pills and have a really strong constitution with longevity in my family....centurions, so I think that's why my liver is still in good shape. I have no idea where or how long I've had it.

So yes, I am positive and I feel everyone will eventually get cured if they follow the treatment, if they get the proper duration of the treatment ( I can't believe some are having problems with this), and if they take care of their bodies and protect their liver. Not everyone can do those things, and it's not their fault, so we will see some fail.

The new drugs are miracle drugs for the demise of the Hep C virus, however it will not take away the issues with a scarred up liver or esophageal varices and other related or unrelated health issues, so we all have to keep that in mind.

I'd like to hear from more who have completed the treatment to follow up on their experiences. Guess that's the "scientist" part of me coming out.

Feb.3rd is right around the corner and can't wait to hear your good news! I'll be thinking of you!

Katie

HHburme · « **Reply #9 on:** January 16, 2015, 11:20:58 pm »

Katie, thanks for all the great info and comments as they are greatly appreciated. Need all the positive energy I can get after being down for so many years while waiting for miracle drugs. Now that we have them it is till difficult to wrap my brain around the fact that we can actually be cured. So grateful for Harvoni and all the support that i find here.
JB

lifechanger · « **Reply #10 on:** January 17, 2015, 12:55:20 am »

Thanks everyone....I'm sure I'll be on here asking stupid question...so sorry in advance. My husband is extremely supportive which is a blessing, he was not around in my drug days, which I'm sure is how i got this, been clean for over twenty years, and the stigma of that time in my life doesn't seem to want to go away...!!! It is what it is...
Called the doctor that diagnosed me and asked him questions, he said i was the first one he's ever had test positive, and he didn't know much, that i should wait o see the specialist. Living in a small rural community, has its disadvantages!
Please feel free to give me lists of questions for the specialist. Im feeling clueless..will definitely read forums, and try and get answers to some of my other silly questions. I really appreciate all of the support!!

Katie · « **Reply #11 on:** January 17, 2015, 01:06:57 am »

lifechanger: what test have you had to determine your infection?

It would be beneficial to get a printout from your doctor and have a folder. Get copies of all tests you have to help keep track and go over when questions arise.

Like I mentioned before you need to find out your
1) genotype which determines the treatment options.
2) your viral load

The specialist may want you to have a liver biopsy which I would ask if an ultrasound could be done first since it isn't invasive and you may not need a biopsy.

Then once that is done you and your doctor will decide which treatment is the best for you. See...that's not too bad!

It is going to be OK and it is wonderful you have a supportive husband. We have all been right where you are, and no question is stupid, you silly girl!

Katie

lifechanger · « **Reply #12 on:** January 17, 2015, 01:56:31 am »

Thanks Katie,
I just feel so clueless! Hate not having answers for all my silly questions. Like, did i give this to my kids, or my husband? My daughter is 26 and has been diagnosed with a fatty liver, i don't believe they tested her for hep c.
I've always been a open book about my past, with them, but the fear of her having it, is killing me. And will she hate me for it? Do i tell her now, or do i wait until after i see the specialist? She has had a lot of medical issues as well, similar to the ones I have. I just want to have answers for her. Don't want her to feel as lost as i do. Or it that an excuse.
Sorry, just ranting.
Ok, having an ultra sound done Tuesday.
Still have no apt for specialist, they said they'd call me.
I hate this waiting game.
Again sorry for whining, just overwhelmed.
Lifechanger

lifechanger · « **Reply #13 on:** January 17, 2015, 02:01:04 am »

Should I Start practicing safe sex again.
How likely is he, my husband, to contract this through sex??

Lynn K · « **Reply #14 on:** January 17, 2015, 03:10:42 am »

Hi Life

No worries on how you got here we are all here now and in this together.
I borrowed the from another forum I go to med help of questions but first I just want to add hep c is not considered to be an STD and the likelihood is very low especially in long term monogamous couples. There are many examples of people married many years where one has hep c and the other does not. In fact the CDC does not recommend long term couples to use protection as they feel it is not needed. House hold transmission is even lower. Just don't share things like razors, fingernail clippers and tooth brushes is the recommendation.

As promised list of questions:

This is from one of HectorSF posts. I will post it for you and others to see.

"Maximizing Your Medical Appointments"

Here are some tips on how to maximize the time spent with your care provider.

1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue. For information on this, see HCSP’s Factsheet Being an Effective Health Care Consumer: Your Medical History.

2. Before your medical appointment, write down your questions and prioritize them.

3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.

4. Make eye contact before speaking to your medical provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.

5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.

6. Prioritize your health issues. Be brief but clear. Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.

7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.

8. Ask for clarification. If your doctor uses words or explanations you do not understand, ask her to clarify or simplify her words.

9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.

10. Take a friend, loved one or advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your
companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.

11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.

12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let her know. Sometimes these
concerns can be easily addressed.

13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.

14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near
what they imagined.

15. Ask the physician if there are resources or support groups she would recommend.

16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results. Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.

17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports. This sets a standard that you are the manager of your health care. It also makes it easier to give copies to
other health practitioners.

18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule. Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf

-------------------------------------------------------------------

and some more ideas

Some questions to ask your doctor...

Do I need to be vaccinated for hepatitis A and hepatitis B?

What is my genotype? What does my genotype mean?

Do I have liver damage? If so, how much liver damage is there?

What are my treatment options?

Is there one treatment you think is best for me?

Are there any clinical trials?

What are the benefits of each treatment option?

What are the potential risks of each treatment option?

How can I protect the people around me from hepatitis C?

Do I need to start treatment for hepatitis C now?

How will this treatment interact with my other medications?

How will you assess whether the treatment is working for me?

What should I do if I have side effects? How can I manage the side effects?

What are symptoms to pay attention to and look out for?

How likely is it that I will develop cirrhosis or liver cancer?

If I do not start treatment now, how often should my liver be monitored for liver damage?

How often should I see a liver specialist? Primary care physician?

hope that helps

Katie · « **Reply #15 on:** January 17, 2015, 03:16:59 am »

lifechanger and cider this may help you too.

They aren't silly questions,

Lynn shared this link for the government brochure on the tests so it may be helpful. What test did you have to determine you have Hep C?
http://www.cdc.gov/hepatitis/hcv/pdfs/hepctesting-diagnosis.pdf

This is a good site with lots of information. You can click on the different links and they may help you understand. Don't try to process it all at once so if you start getting anxious with all the info, take a break.

http://hepatitiscnewdrugresearch.com/hcv-viral-load-test.html

This is from the Hep C in pregnancy link:
"In a recent study performed in Taiwan, a total of 7355 healthy asymptomatic pregnant women were screened for anti-HCV during a 6-year study period, 44 (0.6%) were found to be HCV-infected and 22 mothers were enrolled[21]. Half of the anti-HCV positive mothers were found to be positive for HCV RNA. All the mothers were negative for anti-HIV, 9 had invasive obstetric procedures such as amniocentesis. Of the 22 mother and baby pairs who were successfully followed up, two (9.1%) had eventually confirmed infected with HCV. Both of them were born to mothers with high viral load (HCV RNA > 105 copies/mL)."

Hep C is transferred by blood. Sexual transmission is rare but you wouldn't want sex during your period.

Mothers can infect their fetus but it doesn't always happen so depending when you got infected you may have infected your daughter. Talk to the specialist about that. I am sure she won't hate you if you explain to her you didn't know you were infected and the virus wasn't discovered until 89 and then not really understood or screened for until around 1990-1992(?). I'd be totally honest with her but you might want to talk to the specialist first so you can have more information to share with her. She will have questions and it would be better if you have answers. That is my opinion but you need to do what is right for you.

Personal hygiene items such as razors, toothbrushes, nail clippers should not be shared. You can disinfect things with a diluted bleach solution and infected blood can infect someone for 4 days on surfaces and up to a couple weeks in moist conditions if they are contacted by someone with an open wound or even in the eye. Ex: a cut on the hand used to clean up blood or a shared razor and both parties nick themselves. Viruses are very resilient.

Hope this information helps, just be sure to double check with the specialist. I am not a doctor just another patient.

Good night and we can talk tomorrow if you want.

Katie

Katie · « **Reply #16 on:** January 17, 2015, 03:22:32 am »

Quote from: Lynn K on January 17, 2015, 03:10:42 am

Hi Life

No worries on how you got here we are all here now and in this together.
I borrowed the from another forum I go to med help of questions but first I just want to add hep c is not considered to be an STD and the likelihood is very low especially in long term monogamous couples. There are many examples of people married many years where one has hep c and the other does not. In fact the CDC does not recommend long term couples to use protection as they feel it is not needed. House hold transmission is even lower. Just don't share things like razors, fingernail clippers and tooth brushes is the recommendation.

Thanks for doing that Lynn. You are so good!

It just breaks my heart when someone is in such anguish because they don't understand. I remember how horrified I was but I have the skills for research which obviously you do too. It would have been so great to have this forum at that time so I really want to help.

Katie

lifechanger · « **Reply #17 on:** January 17, 2015, 03:25:46 am »

Thanks Lynn.
That's a huge list, will copy it, make notes and question.
Feeling way better, have decided i need to be positive.
Quiting feeling sorry for myself!!!

Lynn K · « **Reply #18 on:** January 17, 2015, 03:27:09 am »

Hi Life

I am ex Army so forgive me but

HOORAH!

Katie · « **Reply #19 on:** January 17, 2015, 02:07:14 pm »

Quote from: Lynn K on January 17, 2015, 03:27:09 am

Hi Life

I am ex Army so forgive me but

HOORAH!

YES! And thanks for your service Lynn!

lifechanger · « **Reply #20 on:** January 17, 2015, 03:22:20 pm »

I want to thank all of you for the support and knowledge...
You've been amazing and very patient with me!!!

Mike · « **Reply #21 on:** January 17, 2015, 04:16:06 pm »

Hi Lifechanger,

The risk of sexual transmission of HCV is very minimal - especially with log-term monogamous couples.

To borrow a phrase from another forum moderator: Unless you're sex involves a chainsaw - you should be alright.

Lastly, and more importantly, there are no dumb or stupid questions here. Please feel free to ask openly and someone should be able to provide you with an answer.

Best wishes, Mike

cider · « **Reply #22 on:** January 17, 2015, 07:52:47 pm »

To Katie.
thank you for all the information you shared . I am scheduled for my RNA test on tuesday . I feel itchy a through out my body for 2 weeks now. I saw my primary doctor that week and told him about the itchiness he said take anti histamine that was before he found out I have hepatitis c Ab positive. That's the week also I had hives from my allergies from the antibiotics I took. Do you think this symptoms is alarming or do I need to call my doctor or wait for rna result. By the way I just had CT scan for my abdominal last week and i got the result it says my liver is unremarkable.

Katie · « **Reply #23 on:** January 17, 2015, 08:38:29 pm »

Cider: The AB test is not conclusive that you are infected with Hepatitis C. It means you were definitely exposed to it at one time, but everyone exposed does not develop chronic hepatitis. The RNA test will tell you if you are infected and if you need treatment. If you are infected, then you will need to test for your genotype. There are many different genotypes but the most common in the US is genotype 1, and it has been the most difficult to treat, up until last year.The genotype determines the type of treatment options available and your doctor will explain that to you. Harvoni was just approved for use in October of 2014 and it works for geneotype 1a and 1b. I am type 1a, am on the 12 week treatment of Harvoni and that is what I can speak about.

Wonderful news about your ultrsound. Having an unremarkable liver is just what you want and means it is OK. That is what mine is as well so I refused a liver biopsy and stuck with an ultrasound each year with everything remaining fine for the past 9 years. If scarring or decrease in the bile duct occurred, I would have had the biopsy but was fortunate that did not happen.

Having a rash or itchy skin can come from liver damage, but since your liver is unremarkable I would think your problem is from the antibiotics and allergies. I would talk to your pharmacist about the antihistamines to make sure they aren't harmful to your liver. Everything I have taken the past 9 years, I ran by my pharmacist. Keep in mind, almost EVERYTHING you put into your system is processed by the liver and if it is fighting Hep C you don't want to add to it's work.

Many of us fought with brain fog, horrible fatigue and insomnia and I believe it is because the liver couldn't do it's job of detoxifying our systems. Almost everyone has had great improvement with that since taking Harvoni or S/O.

You ALT/AST could also be affected by an allergic reaction so you need to get the results from the RNA blood work. There is a good chance you have Hep C but no reason to put the cart before the horse. One thing I've mentioned before is that it is a horrible disease but it is no longer a life sentence and even if you have it, doesn't mean your infant contracted it. A low percentage of babies get it from their infected mothers. Another thing is the treatment now (Harvoni) is really easy to take and since it sounds as if you do not have cirrhosis, you would handle it very easily. Lots of good news for you. You'll be fine and good luck with your tests. We'll all be thinking about you.

Katie

Mugwump · « **Reply #24 on:** January 17, 2015, 11:49:22 pm »

Quote from: lifechanger on January 17, 2015, 12:55:20 am

Thanks everyone....I'm sure I'll be on here asking stupid question...so sorry in advance. My husband is extremely supportive which is a blessing, he was not around in my drug days, which I'm sure is how i got this, been clean for over twenty years, and the stigma of that time in my life doesn't seem to want to go away...!!! It is what it is...
Called the doctor that diagnosed me and asked him questions, he said i was the first one he's ever had test positive, and he didn't know much, that i should wait o see the specialist. Living in a small rural community, has its disadvantages!
Please feel free to give me lists of questions for the specialist. Im feeling clueless..will definitely read forums, and try and get answers to some of my other silly questions. I really appreciate all of the support!!

Back in the bad old days when I was first diagnosed it was extremely hard to be diagnosed as most doctors just assumed that they were dealing with a heavy drinker not someone with an infection in the liver that caused the same effects on the liver functions as too much booze!
Mine, who I forgive for not diagnosing me correctly in the first place, definitely made that assumption and when a colleague of his sent me for the HCV anti-body test I put it off until he returned. To put this long story short he shook as he re-wrote the test requisition and told me that I should certainly do the test. So this is how I discovered that my constant case of having a "hangover" was indeed the wrong diagnosis and I was indeed HCV infected and active.

It has been a long difficult road through failed treatment, refusal of disability, hard work that I was not suited to do because of my disease profile and now finally the joy that my prayers have been answered by gifted scientists.

The new treatments hold the promise of a functional treatment cure for HCV genotype 1a which is the most common variant of this virus.

You have work to do and helping your doctor to treat you correctly is job one if you have HCV, job two is to stay focused and learn that HCV infection does not mean that you are a walking bio-hazard and with sensible practices you can minimize the risk to others and still lead an active life.

It was a mountain for many to climb but there is a path up the hill and the view from the top is the freedom one feels when knowledge conquers fear.

Keep informed and up to date and stay pro-active in your medical treatment and you will beat the beast!
I know this is a long post but my purpose here is to underscore the best advice that I am sure all here that have been through this can give you.

Best Wishes
Eric

lifechanger · « **Reply #25 on:** January 18, 2015, 01:36:31 am »

About 10 years ago, I was diagnosed with IBS. And have been dealing with issues with that. Always had abdominal pain. About a Year ago, and let me say, I have a very high tolerance to pain, and was in enough pain, that I had the hubby take me to the hospitals, which by the way, I hate. They took me to a bigger hospital about an hour and half away and they took out my appendix. Felt great for about 2 months. progressively the pain has gotten worse. I drive a fork lift, and was restocking product and the pain came hard and fast. I went to my husband who works at the same place bawling and said babe, it really hurts. So off to the hospital again. I saw a PA in the ER, and he did x ray and some blood test. As he was comparing my intestines to a x ray from last June, he notices my liver had enlarged from then. So he did another blood test, and tested me for all hep viruses.
And it came back with a hep c diagnose.
Have always been an open book about my past indiscretion, with my doctors, why didn't they test me sooner? I'm glad at least I know what I am fighting now. Good or Bad, at least its not in my head. Its been a on going battle with doctors telling me its just IBS. I also take a pill for my acid re flux, is that part of this?
What else should I be aware of?
Just worried I will do more damage to myself waiting to see specialist.
What are some of the things I should be worried about, take notice of, and if need be go in?

Lynn K · « **Reply #26 on:** January 18, 2015, 02:18:50 am »

Hi life

Many GP's don't know much about hep c unfortunately. Even though the CDC put it out a couple of years ago that they recommended all baby boomers get tested for hep c and especially if they have known risk factors.

Reflux is it's own thing. I have gerd and reflux due to a hiatal hernia I used to smoke and had the cough from hell. I figure all that hard coughing gave me the hiatal hernia so nothing to do with hep c.

As far as what to expect probably nothing more than tiredness and some body aches which are hard to tell the difference between what could be hep c and what could be just getting older. That is the insidious nature of hep c aka The silent Killer. Slowly over many years your liver is subjected to a constant attack. When you get to the point you are having symptoms those would be symptoms of advanced liver disease once cirrhosis has developed.

The most common complaints from people with hep c is tiredness, body and joint pains, and some complain of brain fog.

Once the patient develops cirrhosis for me the first symptom I had was swollen lower legs and feet called edema. I later was found to have enlarges blood vessels in my throat called esophageal varicies. However unless they burst and you have a bleed you would never know you had varicies again silent killer.

For me even though I have cirrhosis for the last 7 years I work full time plus have a part time teaching job. Possibly I am more fortunate than some and I guess that could all change rather quickly for me from what I understand but hopefully that will never happen to me.

Basically what you can expect as far as symptoms depends a lot on how much if any liver damage you have. But if you think it seems like you are more tired than you believe you should be this could be why.

Just get your complete diagnosis and then you will know where you stand. I don't see where you have had the HCV RNA test for the virus so this could all be an academic discussion. If you have only had the test for the antibody you may not have hepatitis c at all just you were once exposed but beat the virus on your own about 25% of people do.

Best to you

Katie · « **Reply #27 on:** January 18, 2015, 02:32:51 am »

Lifechanger,

I have "acid reflux" and my doctor who is well informed never mentioned it was related to Hep C, but it didn't follow the normal causes, such as happening when I was laying down or after I had eaten. It would just randomly happen and if I bent over sometimes I would have acid come up. When I had a chest x-ray it showed I had a herniated esophagus (hiatal hernia) and my doctor still didn't think much of it. It would come and go and I decided against the "purple pill" since it was so erratic. Then it showed up on an MRI for my back and finally my doctor did a Esophagogastroguodenenoscopy. (now that's a mouthful!

) It's when they do an endoscopic test to look at your esophagus down into your stomach. Everything tuned out OK but at that time I had never been told about esophagus varices which are varicose veins of the esophagus. This can be serious and I think you might want to bring it up with your doctor since you are having problems. It can cause bleeding and several on this forum have discussed it. It is caused by a damaged liver as blood flow pressure builds up and the 2 places it manifests itself is in the esophagus and the anus causing hemorrhoids).

Hopefully you'll get into the specialist soon. The ultrasound will give indication on the condition of your liver and they may want to do a liver biopsy if they see scarring.

This is a good site with good information on what to do to protect your liver. You might get some answers to your questions.
http://hepatitiscnewdrugresearch.com/hey-i-have-a-question-about-cirrhosis.html
There is SO much info on this site so just go down the tabs and read one at a time but try not to do too much at once so you get overwhelmed.

I strongly encourage you to go to your doctor's office and get all record of the tests you have had recently which could be related to liver issues, including the reports on your x-rays and all blood tests. That way when you are researching Hep C you can see what you have had, your genotype, viral load and liver functions and you will have a base line for comparison for future tests.

Gallbladder issues also can be a problem with HepC since they are closely related. Pay attention to your body and maybe start writing down any issues you are having with the date and time and see what affects what. Then you will have that list to ask the specialist. It is so easy to forget about those things when you are with the doctor. I always make a list of specific things to ask whenever I have an appointment and I check them off the list as they are covered. Please refer to what Lynn posted too as those are excellent guidelines.

Hang in there and try not to get paranoid. Sometimes when a doctor focuses on one problem (IBS) they forget to look any farther. So many conditions have similar symptoms and that's why we must be proactive, listen to our bodies and stand up for ourselves. Most of the responsibility is on us. Doctors are not mind readers and sometimes we have to be very persistent.

Hope this helps.

Katie

Katie · « **Reply #28 on:** January 18, 2015, 02:36:54 am »

Quote from: Lynn K on January 18, 2015, 02:18:50 am

Hi life

Many GP's don't know much about hep c unfortunately. Even though the CDC put it out a couple of years ago that they recommended all baby boomers get tested for hep c and especially if they have known risk factors.

Hi Lynn,

We are always typing at the same time! HA! Are you on the West Coast?

Actually with the possibility of esophagus varices it may be connected with acid reflux. Do you know what the symptoms are for the varices? I'll need to check on that but it makes sense to me.

I enjoy your posts and your information is great.

Katie

lifechanger · « **Reply #29 on:** January 18, 2015, 02:43:56 am »

A Big Thank You, to both Lynn And Katie, you both have been great, and very knowledgeable. I'd be lost without everyone on this site, whose posted and helped me cope.
Again, Thanks!!!
Not getting stressed, just wanting to know all i can, i hate not knowing. Will read more, but then I get all these questions, and of course, this is the only place i seem to get any support. My husband reads too, and tries, but he's new to this with me.

Lynn K · « **Reply #30 on:** January 18, 2015, 02:45:12 am »

Hi Katie

Auburn WA near Seattle watching SNL on the tube :-)

Esophageal varicies have no symptoms unfortunatly unless they become enlarged and not treated they can burst with the patient bleeding out.

My GERD is due to my hiatial hernia and that can be concern with the varicies as the acid could cause further weakening off the enlarged blood vessels and could increase the possibility of a bleed.

Varicies were described to be as being like vericose veins in your throat.

Go Hawks!

Lynn K · « **Reply #31 on:** January 18, 2015, 02:47:19 am »

Life have you had the test for the virus HCV RNA py PCR or just the test for the antibody?

The HCV RNA test would also have a viral load

lifechanger · « **Reply #32 on:** January 18, 2015, 02:53:43 am »

Have had no other test done except the blood test at the clinic.
I am going to the clinic to get copies of all my tests from both doctors.
Maybe i can check that on line...will check..

Katie · « **Reply #33 on:** January 18, 2015, 03:04:50 am »

Quote from: Lynn K on January 18, 2015, 02:45:12 am

Hi Katie

Auburn WA near Seattle watching SNL on the tube :-)

Esophageal varicies have no symptoms unfortunatly unless they become enlarged and not treated they can burst with the patient bleeding out.

My GERD is due to my hiatial hernia and that can be concern with the varicies as the acid could cause further weakening off the enlarged blood vessels and could increase the possibility of a bleed.

Varicies were described to be as being like vericose veins in your throat.

Go Hawks!

Hey Lynn, I'm in SSE Alaska so we are just an hour different. Lots of East Coasters on this forum!

I am sure I got my hiatal hernia from a horrible sinus infection about 10 years ago and I would cough so hard I would throw up and constantly blow my nose. Was on antibiotics on and off for over a year as I couldn't get rid of it. Turned out my vit D level was at 13 and I caught everything that came along and whatever I got would hang on for months. I am sure having that hernia would make it easier for varices if you have cirrhosis as the build up of pressure goes to the weakest spot. Fortunately I don't have them but am glad I had the test to rule that out. I imagine if they started to rupture and bleed you would notice it in your stool.

Enjoy your evening. I'm about ready to call it a night. Already after 11:00. Time flies on a computer. Thanks for the info.

Katie

lifechanger · « **Reply #34 on:** January 18, 2015, 03:17:09 am »

Ok am in my chart, and that does not appear to be on there. Have nothing on hep test. Will inquire on that Tuesday.

Katie · « **Reply #35 on:** January 18, 2015, 03:24:03 am »

Good for you. Following through is important and you need the genotype and the RNA-for viral load to know how to proceed and confirm you actually have an active infection.

Sleep well tonight and take the bull by the horns tomorrow...rather, Tuesday!

Katie

Lynn K · « **Reply #36 on:** January 18, 2015, 03:27:02 am »

Hi Katie

Yeah I used to cough so hard from smoking for many years I felt like I was going to cough myself inside out. I used to throw up fairly often so I totally believe that is how I got the hernia.

Varicies form due to the increased portal pressure in the livers portal vein from liver damage due to cirrhosis. Apparently the veins in the esophagus are the first veins up stream from the liver so basically they result from back pressure.

From what I understand the symptom would be vomiting blood in a massive rupture and then losing consciousness due to massive blood loss. Obviously this is a life threatening emergency. If it was a milder bleed or possibly from another symptom of portal hypertension portal gastropathy which could bleed slowly and would be noticed in black tarry stools that contain digested blood also the patient would feel weak due to blood loss. This is one of the ways cirrhosis kills people.

So be glad you do not have cirrhosis and varicies

Lynn K · « **Reply #37 on:** January 18, 2015, 03:32:09 am »

Life here is what MyChart said for me before I started treatment.

HCV RNA BY RT-PCR, QUANT - Details

Component Results
Component   Standard Range   Your Value
HCV RNA RT-PCR, QT   See Notes IU/mL   2422260
HCV LOG 10   See Notes log10 IU/mL   6.384
HCV QNT TEST INFO   See Notes   See Below
The quantitative range of the assay is 15 IU/mL to 100 million IU/mL
using COBAS(R) TaqMan(R) HCV test, v 2.0. The limit of detection (LOD)
and lower limit of quantification (LLOQ) for this assay is 15 IU/mL.
Results less than the quantitative range of the assay will be reported
as "HCV RNA detected, less than 15 IU/mL"

So that is what you are looking for

Katie · « **Reply #38 on:** January 18, 2015, 03:51:19 am »

"From what I understand the symptom would be vomiting blood in a massive rupture and then losing consciousness due to massive blood loss. Obviously this is a life threatening emergency."

That sounds terrible....and I am very grateful that I am basically in good health. Once I got my VitD levels up in the normal range, I rarely get sick. Much better. Mobility is an issue with me due to all of the hard work done in field research. I blew out my L5 disc with all of my lumbar vertebrae in bad shape plus I have arthritis in my wrists, left shoulder and right knee. I'm an orthopedics dream! HA! But I don't let it stop me.

I'll be glad to get this monster taken care of so I can focus on my joint issues and do what I can to keep moving. I still have too much to do and can't picture myself as a couch potato. All in all, life is good and getting better.

Katie

Getting old sucks but as they say, it's better than the alternative.

Lynn K · « **Reply #39 on:** January 18, 2015, 04:07:21 am »

Katie

"Getting old sucks but as they say, it's better than the alternative"

I could not agree more

Mugwump · « **Reply #40 on:** January 18, 2015, 04:49:16 am »

Quote from: Katie on January 18, 2015, 03:51:19 am

"From what I understand the symptom would be vomiting blood in a massive rupture and then losing consciousness due to massive blood loss. Obviously this is a life threatening emergency."

That sounds terrible....and I am very grateful that I am basically in good health. Once I got my VitD levels up in the normal range, I rarely get sick. Much better. Mobility is an issue with me due to all of the hard work done in field research. I blew out my L5 disc with all of my lumbar vertebrae in bad shape plus I have arthritis in my wrists, left shoulder and right knee. I'm an orthopedics dream! HA! But I don't let it stop me.

I'll be glad to get this monster taken care of so I can focus on my joint issues and do what I can to keep moving. I still have too much to do and can't picture myself as a couch potato. All in all, life is good and getting better.

Katie

Getting old sucks but as they say, it's better than the alternative.

Katie try tai chi! Particularly the moves sitting and exercising the pelvis with a controlled snake like gentle movement tilting the pelvis while keeping the spine straight. It is working wonders for me as I have severe decreased function in my left leg due to stenosis superior to L4. Which I fractured falling off a log deck a long time ago. Tai chi is marvelous it has the simple idea that you will not deliberately hurt yourself but you can move every joint in your body if you wish and do so in a gentle controlled and graceful way.

Those old Chinese men and women are really on to something as it is working wonders for me. My arthritic back is now actually working the way it should and the arthritis in my hands is fading due to my study of music and the careful slow study with both hands. So playing a musical instrument can also help with keeping your hands and phalange joints active!

Life,,,
I really pray you are only HCV anti body reactive and you are not a full infected status individual.

Best wishes to all
Eric

Lynn K · « **Reply #41 on:** January 18, 2015, 05:14:17 am »

Found a good web site from the Mayo Clinic explaining everything about esophageal varicies

http://www.mayoclinic.org/diseases-conditions/esophageal-varices/basics/definition/con-20027505

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