am I going to die

[hopelessness2]

My doctor missed my symptoms for the past 3 years. said it was repetitive motion.  Finally after 3 years frustration and pressure from me he finally ran tests. Just was diagnosed with HVC Friday. I already have red stools rapid heartbeat, yellow eyes, fatigue, dark urine, pain and itching on the ribs, bruising, ankles swollen, nausea, and am always cold. Don't know my geno type yet, I'm 55, scared, and wan to know, am I going to die?

[jdwithhcv]

My treating doctor was a DO.  I have genotype 1a, and was diagnosed at age 50.   I began tx with a VL of 6 million, stage 2/3, grade 2/3.  I was UND at 4 weeks, and remained UND throughout 48 weeks of tx.  I am presently 15 weeks post tx and I remain UND.  Treatment was difficult but I am glad I did it, now I can look forward to a future with my own liver (to which I am quite attached!)

The information you received is contrary to the most recent available in that g1a patients who do not clear the virus by week 12 are now placed on extended treatment.  Some here on the forum have extended (usually to 72 weeks) and have successfully cleared the virus.  

Please do not despair, there is a lot of hope for you.  Happy Thanksgiving and the best of luck and health to you.

jd

[hopelessness2]

This is what I know after my first visit with the GI Doc. I still do not have the results of my geno type which is a determining factor of treatment.
My Husband is an RN, CONR, surgical with a degree in economics, and director of a surgery center. I'm in good hands. I thought Holistic meant VODO as well. However, he has corrected me. A "DO.", doctor has the same qualifications as a medical doctor including med school degree, practicing everything a doctor does, including surgery, with focus on  other methods of healing such as high antioxidants of C injections, oxidization of the body, and supplements. They have several DO's they are working with. It is not VODO, and is well respected in the medical community.

Here is what I learned yesterday
1st month of treatment interferon ribavirin with  a response=90% chance of recovery.
2nd month of treatment interferon ribavirin with  a response=70% chance of recovery.
3rd month of treatment interferon ribavirin with  a response=50% chance of recovery.
No response by the third month, they will take you off of the therapy-non responder.

[fretboard]

I gotta agree with HCA on this, your symptoms are far too serious to take an herbal or holistic approach.  Already your swelling up, that is not good.  Put tx off for as long as you can, but don't do stuff that don't work.  Your appointment at Scripps should really be an eye opener for you.  good luck

[Marcia2202]

You seem to be on the right way with the doctor's appointments you have lined up. I hope you had a good meeting with your doctor today and I wish you a really good meeting with the hepatologist tomorrow. He will most probably run a whole lot of blood tests also to find out your genotype and Viral load and advise you to maybe first have an ultra sound scan and then a biopsy to be able to evaluate the state of your liver.

Unfortunately the only way to eradicate this virus is to treat with the current drugs. Some people take the holistic approach, as they do not have advanced liver damage and actually can allow themselves to wait a few years (while being closely monitored, as not to progress to more damage) and wait for new less harsh treatment. But even then, the holistic approach needs to be one, which has been well studied.

Please find out all the details about your situation, before you take any decision. But you need to take in consideration, that you might well have to treat sooner than later and that there really is no other way to get rid of the disease and thus stop the damage it does to the liver. Here is a good video presentation of a top hepatologists in the US.

http://www.mssmtv.org/player_alf/player.php?id=alf_2007_01

[HCA]

I strongly advise you to abandon the 'holistic' approach for the following reasons
1) Does not work and will throw money down the drain
2) The holistic quack will undermine your confidence in medical science
3) Your original post indicates the prescence of jaundice and oedema-serious symptoms!
I try not to be dramatic in my responses,but in your case I have to say 'Get real!'
That's all -good luck.

[Texas714]

Do you have any of your lab reports?  That will tell you a lot more than you think.
There are people around here with all kinds of degrees of this disease.  I know how you feel but you don't even know what stage you are yet.  Don't borrow trouble.  If you are like me enough will find you!
Best thing to do now is stay calm so you can make good choices.
Good Luck to you and all of us.

[Trinity4]

"Most" patients with geno 1 do not relapse.  Percentage of cured is approx 40-50 depending on how you look at it.  That is not most. Holistic approach may make you feel better but it's not a cure.  If you looking for a cure, interferon and ribavirin are the only options right now.

[HCV_BSN]

Please don't panic.  The doctors at Scripps are some of the best.  Before you try any herbal treatments or holistic treatments, talk to the doctors at the clinic.  So herbs can actually speed up the virus replication or increase the damage it can do to your liver.  
There are things you can do to help slow down the disease process on your own.
1. if you drink alcohol, stop.  It can make a damaged liver worse and decrease the chance of an SVR.  Instead drink water, decafe, and other naturally non-sugary drinks.  Watch out for "Diet" drinks.  The sweeteners can cause diarrhea.
2. eat a well balanced diet.  Fatty liver disease can make the medications not work as well and speed up the disease progression
3. if you smoke try to quit prior to starting interferon therapy.  don't try to quit once you start it makes it extreemly difficult.
4. if you smoke marijuana, again Quit.  There are studies showing this can reduce the chance of the medications working and achieving and SVR.
5. even though you don't feel like it, get up and move.  light to moderate excersice can help you feel better.  What you learned in junior high "bodies in motion stay in motion, bodies at rest stay at rest" really does apply.  Even to people.
6. join a support group.  there are lots of great support groups in California.  www.hcvadvocate.com can supply not only fantastic info about the disease, it can help you find support.
7. if you do start interferon therapy, use a specialty pharmacy for your medications and make sure you are really ready.  It is a long 48 weeks and it is not an easy therapy.  You WILL have side effects.  Specialty Pharmacies can offer clincal support, emotional support, explain labs that you might not have understood, call and remind you when it is time to refill your medications, link you with copay assistance programs, provide free replacements for Redi-Pens or syringes that don't work correctly (even if it is user error).

Good Luck

[nygirl7]

I'm finding that most patients with geno type 1a or 1b relapse after 1 year of treatment.


There are PLENTY of us in here who had geno1 (i had both 1A and 1B) and I have been CURED of the disease for over two years now.  Lots of my friends have as well.

There is no holistic approach that will cure you.  The ONLY thing that can are the current drugs out there. Do not buy into ANYTHING that promises it will cure you if it is not an FDA approved drug (or perhaps one of the current trial drugs but they too use interferon and ribavirin as well).

NOBODY really WANTS to do treatment - if there were an easy way out believe me, we all would have taken it.  However being cured of this disease is important - so you just gotta do what you gotta do.

[hopelessness2]

Thanks all for your support and comments. I feel hopeless because of my symptoms, and all of the information I'm Reading on the virus. I'm finding that most patients with geno type 1a or 1b relapse after 1 year of treatment. I personally don't want to go through with it. I'm depressed and nauseated enough as it is. has anyone here taken a holistic approach to this? I have an appt with a gi guy I don't like today, then scheduled with a HVC specialist at Scripps tomorrow, and have an appointment with a DO doctor at a wellness center Tuesday. I'm really leaning toward a holistic approach. Has anyone here tried it?

[pjhep80]

my last blood work my hemoglobin was 1 point high, first time ever what does that mean i wonder?

[redrodeo]

I also am 55. And want to repeat what everyone else has said. Yes, Its take action time NOW! Personally I would not wait till I saw a specialist it might take months to get into see one. I would have your current MD order a biopsy if possible or at least a ultrasound.
Do the standard blood tests(you want to know) 1) genotype,2)Thyroid2)Hemoglobin4)Platelettes. IOnce you have this info start treatment asap. Be in touch with people on this site. Many know more then average md and can help you navigate thru treatment. These treatment protocals are very straightforward.
Personally I've been that sick and am still alive. I finished tx in May and am still SVR!!!!
Please feel free to write me anytime.
Red

[HCA]

Your symptoms are consistent with chronic Hep C.
You require expert medical attention.
Make an appointment with a fully qualified hepatologist right away.
Do not leave it the hands of your present doctor.
There are further diagnostic procedures required to evaluate the condition of your liver.
Don't think about dying-think about the fight you now have on your hands.
The mortality rate is low and there are many things that can be done.
There are others here whose condition was very serious but are now restored to health,so get busy and meet it head on.
You might consider changing your log in name to something other than 'hopelessness2',It might be how you feel now but the fightback has not yet started.

[pjhep80]

it is mindblowing how ignorant most GP's are about this disease...

find a real dr ASAP - gastro or a hepatologist (if you can find one, my bum stupid HMO ******** insurance when i searched for a hep dr came up EMPTY)

fyi even some gastro's are not informed, educate yourself about your disease and quiz the doc and if they cant answer, find another one

[granitekonig]

Get on treatment as soon as possible - you will need to see a gastro Dr. ASAP. From what I've read, people who have symptoms of the actual hep c virus will see almost immediate relief from the meds, but you also get some of the side effects. Anyway go see a gastro Dr. immediately. Your current Dr. should be able to refer to one. Demand that he does!

You'll be fine. Think positively. Feeling despair and hopeless will not help you. Ask for help from those around you. You can do it.

[danstewart1958]

YOU ARE NOT GOING TO DIE!!!!!!!! Get rid of that bumb doctor. I had those symptoms too. Usually yellow eyes mean yellow jondis and the other sypmtoms are very serious
sounds like end stage HEP C.....See a Hepatologist....hell with those symptoms go to the hospital immediately....GOD BLESS!!.........Dan

[CMcH]

We all die eventually, but HCV is not a death sentence. It can lead to CA or the need of transplant but this usually a slow progression. There are many things you can do to manage or TX it. Don't panic just do your research. You have time. Get your Biopsy and VL and geno type.
Hang in there,
Connie

[IMstacie]

Don't be scared, be proactive.  Now you know, please read and research.  See a Liver Specialist or Gastro that has treated hep c.  Not all have the required experience.  If you are on an HMO, insist on a specialist.   I had to change doctors and was uncomfortable doing it.  But, I'm glad I did.  Also, tests take time as well as the virus itself.  Many folks have the virus for 20 years plus and come out fine.  It's not hopeless.

[Rockerforlife]

You have to get a biopsy to see the level of damage now...thats if your blood platlets will allow the bx...work with your doctor...a pro hep doc would be wise.