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Hepatitis C Info. & Links

"It is estimated that there are almost 5 million people infected with this disease, and 80% of those are not yet aware that they have it.  How scary is that?" -Lori Vosburgh, Advocate for Sufferers of Hepatitis C.

This liver-disease is transmitted blood-to-blood in many ways (and not solely by means of a shared hypodermic needle)!  Those who have ever had a tattoo, body piercing, blood transfusion or even something as innocent as a manicure at a nail salon, could be at risk!  Ask your Doctor to test you for this virus!  Don't wait until it's too late!!!

HIGHLY RECOMMENDED WEBSITES & LINKS:

www.hcvanonymous.com

www.hepatitisneighborhood.com

The above are 2 really great websites!  In fact, they're my two favorites.  

http://www.hepcesn.net/comboguide.htm

This website is a great one for those on treatment or thinking about starting treatment.  It's written by two very creative and witty women who share their experiences and suggestions on how to deal with the side effects of treatment.  (It's also one of my favorites!)  In their own words:

"We are not suggesting that you take our advice over any given by a physician, homeopath, nutritionist, or anyone with a medical degree.  These are only suggestions given with the best of intentions, along with our own wicked, twisted brand of (drug induced) humor.  

Lord knows, we need a laugh when we are on this stuff!"

Other recommended Hepatitis C Links:

http://www.hepcnet.net

http://www.hcop.org

http://www.hepcprimer.com

http://www.lvosburgh.freewebsitehosting.com

http://www.beingalivela.org/news0802/amnotjoesliver_news0802.html

For help in understanding blood-test results: http://library.thinkquest.org/C0115080/?c=cbc  Then click on: "Blood - The River of Life"

click here to view this site

For "Singles" who'd like to connect with other "Singles" with Hep c...

Click here: The NHCC's Hep C Singles List

Recommended Reading:

Hepatitis Liver Disease What you need to know
by Melissa Palmer, M.D. (who also just happens to be my Doc - she's Fabuloso!)  www.liverdisease.com 
Living with Hepatitis C A Survivors Guide
by Gregory T. Everson, M.D. and Hedy Weinberg

EXCERPTS FROM:  Living with Hepatitis C, A Survivors Guide...(I found these excerpts to be extremely helpful in reaching an "acceptance" of my diagnosis and to help my understand the emotional turmoil I was going through.)

"Hepatitis C may be the biggest emotional challenge you'll ever face.  How do you deal with chronic disease without letting it take over your life?"  "If you lose your sense of yourself as a healthy person and you struggle or rebel against becoming a patient, how do you adjust?  Some patients develop a sense of grief.  Grieving is one way we work through loss, whether it's loss of our old selves or loss of our dreams."  "Grieving is normal - even necessary.  It's the bridge between what was to what is.  If you don't go across that bridge, you may face a continuing struggle." 

"The goal is balance."   "Grieving is nature's way of helping us adapt to new information about our illness."  "The truth is, each one of us goes through the process in our own time frame and in our own way - and the healing ingredient is kindness.  Be patient with yourself.  You will work it through, and you will come out of the crisis with a stronger sense of who you are."  

*MY MEDICATIONS - Rx

*Keep in mind that prior to my Dx, I barely ever took a Tylenol!
Peg-Intron - weekly injections (Friday eve.)
Ribovirin pills (5 daily / 2 in a.m., 3 in p.m.)
Celexa (anti-depressant) 1/day
Xanax  - as needed for anxiety (usually Saturdays after injection)
Imitrex (for migraines)
Methocarbamol (muscle relaxer) "As needed"
Cimetidine - 1/day at bedtime
Neupogen (to raise White Blood Count) -Weekly Injections (until further notice)
more to come...

I am currently taking weekly injections of a medication called Peg-Intron.  (This is a pegalated form of Interferon, which is what they use on AIDS and Cancer patients.  It is considered a form of Chemotherapy.  The pegalated version stays in your system longer, so rather than having to inject myself three times a week, I only need to inject myself once a week.  I do my injections on Friday nights so that by Monday morning, hopefully I am able to get up and go to work and earn (what used to be called) a living. The side effects from the meds are many and can be quite severe.  They also seem, for most, to get worse with time. 

I am also taking 5 pills daily of a medication called, Ribavirin.  Prior to starting these meds, my doctor prescribed an anti-depressant called Celexa.  It seems one of the side-effects of the Hep C meds (mentioned above) is severe depression.  I do feel the Celexa is very helpful however, at times I feel it makes me very apathetic!  I'm also taking a medication called, Imitrex for the debilitating migraines I frequently get, especially the day after the injections!

 

OTHER SIDE EFFECTS OF HCV MEDS:

Side Effects of INTRON® A

Other side effects you may experience include fatigue, fever, muscle pains, general body aches, chills, and nausea. You may also find that food tastes different or that you have a metallic taste in your mouth. Mild hair thinning and dry, itchy skin can also occur. Some of the side effects are similar to the symptoms of hepatitis, so you may use some of the same approaches to handle these problems whenever they arise. (See Living with Hepatitis.)

This is data from the Peg-Intron website:

The most serious possible side effects of PEG-INTRON® include:

Mental health problems and suicide. PEG-INTRON® may cause patients to develop mood or behavioral problems. These can include irritability (getting easily upset) and depression (feeling bad about yourself, or feeling hopeless). Some patients may have aggressive behavior. Former drug addicts may fall back into drug addiction or overdose. Some patients think about hurting or killing themselves or other people and some have killed (suicide) or hurt themselves or others. You must tell your doctor if you are being treated for a mental illness or had treatment in the past for any mental illness, including depression and suicidal behavior. You should tell your doctor if you have ever been addicted to drugs or alcohol.

Heart problems. Some patients taking PEG-INTRON® may develop problems with their heart, including low blood pressure, fast heart rate, and very rarely, heart attacks. Tell your doctor if you have had any heart problems in the past.

Blood problems. PEG-INTRON® commonly lowers two types of blood cells (white blood cells and platelets). In some patients, these blood counts may fall to dangerously low levels. If your blood counts become very low, this could lead to infections or bleeding.

Body organ problems. Certain symptoms like severe stomach pain may mean that your internal organs are being damaged.

While taking PEG-INTRON®, you should call your doctor immediately if you develop any of these symptoms: new or worsening mental health problems such as thoughts about hurting or killing yourself or others, trouble breathing, chest pain, severe stomach or lower back pain, bloody diarrhea or bloody bowel movements, high fever, bruising, bleeding, or decreased vision.

MY NUTRITIONAL DAILY SUPPLEMENTS: 

 Muti-vitamins are not suggested as people with liver disease must watch their Iron and Niacin intake (which is present in most all Mutli-Vitamins - if you can find a Mutli-Vitamin without Iron & Thiamin, please let me know!).  Most of the following were recommended to me by a Nutritionist.  Anti-Oxidants are very important.  As there is still controversy about taking "Milk Thistle", which is not yet government regulated, my  Doctor recommends against it.  The Nutritionist also advised that Vitamin A supplements are contra-indicted to people on Interferon.  Zinc (which helps the effectiveness of the Interferon injections), Biotin & Vitamin E supplements are recommended by Dr. Palmer.  

***NOTE: If you have liver disease and/or are considering starting medication, please see your Doctor about any supplements you are taking or considering and keep closely monitored!!!

"Emer'gen-C" (1000 mg.'s of Vit. C w/potassium))
Zinc - (50 mg.)
Biotin (300-600 mcg's.)
Bromelain Caps - the "unripe stem of the pineapple - recommended by Nutritionist to help quickly eliminate the toxins from the meds and therefore lesson the effects of the sides - (500 Mg.'s 3/day = 1500 mgs./day)
Alcohol Detox (Vit C, Vit. E, Thiamine, Milk Thistle  - take at night w/soy milk)
Vitamin E (800 mg./day)
Sublingual Vit. B12 1/day
Alpha Lipoic Acid (600 mg.)
Whey protein shake w/one-half frozen banana (every morning) - DELISH!!! and.....it helps to swallow all these "Dang" pills!!!
1 GALLON WATER/DAY (good luck with this one)!!!

*People with liver disease should avoid Niacin and Iron supplements which put excess strain on the liver!

 

Also recommended but not yet taking:

N-Acetylcysteine (NAC) - per my nutritionist - "the most massive anti-oxidant your body makes" (can't afford to purchase as of yet!)
SIMUS EXTRACT (Only if white blood cell count goes down - spray under tongue every night)

*Gift certificates to GNC or The Vitamin Shoppe will also be gratefully accepted!

 

*GREAT DRINK RECIPE

This is my favorite non-alcoholic beverage... 

Decaf, Iced green tea (brewed with a little ginger - which is great for an upset stomach), sweetened with a fresh squeezed orange and a natural sweetener called "Stevia" is absolutely DELISH.  Drink it on lots of ice in a giant glass through one of those flexi straws we had as kids and you will feel very special!

Note: Besides eating an overall healthy diet, taking supplements (as advised by your Doctor and/or nutritionist) and watching your protein intake and of course abstaining from alcohol entirely! Those suffering with HCV should watch their caffeine intake and also try to abstain entirely. If you are taking the meds, you should really try your hardest to drink a gallon of clear fluids a day. My green tea recipe goes down real quick and easily helps meet that gallon prerequisite; it will help to lesson the effects of the "sides"! 

 

 

 

 "Dance like no one is watching... Love like you've never been hurt... Sing like no one is listening... and Live like it's Heaven on Earth!"