Autoimmune Hepatitus & Primary Sclerosing Cholangitis

Hello, my name is Bryan. I was diagnosed with Autoimmune Hepatitis back in 1986. For a while, no one knew what I had and I have never found out how I "got" autoimmune hepatitis. The doctors believe it was hereditary but they really don't know. Both of my grandfathers past very young, when my parents were young. I guess one of them could have had a liver issue but back then when you died young, they said you worked yourself to death. After being diagnosed with AH I later found out that I also had Primary Sclerosing Cholangitis or PSC. So for years, I lived with both and really it was a normal way of life to me. I really didn't have major side effects except for jaundice and fatigue. I consider myself lucky that I didn't have to deal with the itching and high ammonium levels. Really, most people didn't even realize I had a live disorder. My doctor use to say I was the healthiest liver patient who needed a liver that he knew.

Around 2008, my doctor told me he wanted to get me on the transplant list as Cirrhosis was occurring and he wanted to get ahead of it. So in 2009 after all of the tests I was added to the transplant list. My liver numbers (MELD) were low and I was pretty active so my doctor said they would look for a healthy liver. Well after a year or so, my numbers improved and I was deactivated from the list. Again it was life as usual. I would get my liver functions checked every 3 months to make sure things was still OK.

Now I'm a bicycle rider (road bike) and try to do a few bike events during the year usually in the 30 - 100 mile range. Once a year my buddies and I do a ride to support multiple sclerosis which is a 2 day ride ranging from 150 - 200 miles. Well in 2010 I did the ride and felt the best I had every felt. My buddies couldn't believe how great I was riding. After the ride it was time for my 3 month blood work and come to find out my MELD score was the worst it had ever been. Well as I was seeing my doctor he decided to put me back active on the list. Now being that I was on the list before I really didn't give it much thought. I "assumed" it would be a year or more before I received the call. The call came 5 days after my doctor appointment! They had a liver.

I just celebrated my 3 year anniversary and have been doing great. I was very fortunate to receive such a wonderful gift and to have the support of family and friends. I take my daily meds and do what the doctor tells me to do. My doctor told me that when my day comes to leave this earth, he doesn't want the cause to be my liver. Since my transplant, I haven't have any issues out of my liver. I would say he is doing something right!

Herbal Approach to Treating Hep C - Robin Rogers

Many people cannot bare the terrible side effects of the chemicals used to treat Hepatitis C and turn to herbal remedies to rid their bodies of this virus. Robin Rogers, an up and coming Blues artist, was one of those people. I knew Robin and witnessed, from afar, her sad death, in 2010. Robin developed cancer and slowly went out with grace!

Natural Awakenings-Charlotte featured an article on Robin Rogers, in 2008;

Thrives with Naturopathic Protocol

When local blues vocalist Robin Rogers was diagnosed in 2001 with Hepatitis C, she feared her life was over. Rogers, who lives in Dallas, NC, sought the standard medical treatment regimen for the blood-borne, chronic disease that is potentially fatal. She soon discovered her treatment was as toxic as chemotherapy. Eventually she developed anemia, which led to taking even more prescription drugs.
Weak and exhausted, Rogers decided to research alternative options for her care. She started seeing a local naturopath who prescribed a supplemental and dietary protocol. Rogers was empowered by the incredible results.
“I felt better immediately. It was as though something had been missing in my body and now there was a completeness,” said the singer whose voice has been compared to Bonnie Raitt and Janis Joplin’s. “I’ve learned that a holistic approach actually supports and strengthens my immune system as opposed to tearing it down.”
Traditional drug therapy has a 48-50% chance of a cure and if it’s ineffective the next step can be liver replacement and “staying on immunosuppressant, steroid-based drugs all your life and you can’t get sick because your immune system is compromised, ” explained Rogers. “ I don’t think people realize how much they can revitalize their bodies using food, supplements and fitness. I wish more doctors were open to alternative modalities.”
Rogers hopes to raise awareness of Hepatitis C because many people experience mild or no symptoms and are unaware they have it. “If I had been diagnosed earlier with routine blood work, I would have been able to slow it down. The results in my tests after using a holistic approach were so significant my gastroenterologist could hardly believe it. You can manage this disease and live a normal life,” she said.
Robin Rogers was the Blues Foundation’s 2005 winner of the “Best Self-Produced CD” Award and finalist in the 2004 International Blues Challenge. Visit RobinRogers.com to see where she is performing in Charlotte.

I am not sure if there are people that actually become virus free and stay that way, with this approach. Do you know? Please let us know what you think in the comment section below...

Types of Liver Disease

Although liver disease is stereotypically linked to alcohol or drugs, the truth is that there are over 100 known forms of liver disease caused by a variety of factors and affecting everyone from infants to older adults. Below are several different types of liver disease and if you click on the disease it will tell you about it. This information is provided by the Canadian Liver Foundation.

* Alagille Syndrome
* Alpha 1 Anti-Trypsin Deficiency
* Autoimmune Hepatitis
* Biliary Atresia
* Cirrhosis
* Cystic Disease of the Liver
* Fatty Liver Disease
* Galactosemia
* Gallstones
* Gilbert’s Syndrome
* Hemochromatosis
* Liver Cancer
* Liver disease in pregnancy
* Neonatal Hepatitis
* Primary Biliary Cirrhosis
* Primary Sclerosing Cholangitis
* Porphyria
* Reye’s Syndrome
* Sarcoidosis
* Toxic Hepatitis
* Type 1 Glycogen Storage Disease
* Tyrosinemia
* Viral Hepatitis A, B, C
* Wilson Disease

Liver Anatomy & Function

Hep C Triple Treatment Side Effect Remedies

The long list of side effects from triple therapy in my last post makes it seem almost impossible to complete the necessary treatment plan that is required to become virus free, but there are many people that have done so and are, to this day virus free! I will try to make a similar list of ways to combat the side effects in this post and hopefully make the patient a little bit more comfortable in kicking this nasty Hep C virus!

First and foremost the most important remedy is to drink lots of water on a daily basis. Water cleanses the system and will not only help shed this virus away, it will help push the medications through it too! Remember that you are trying to cleanse your system so it is important to not put anything in it that will continue to hurt your liver or any other part of your body.

These foods should be almost entirely removed from ones diet:
* Processed Foods
* High Saturated Fat
* Sodium (salt)
* Sugar
* Caffeine
* Vegetable Oils
* Bell Peppers
* Milk
* Potatoes; French Fries & Chips
* Tomatoes
* Eggplant


Foods that are unprocessed and are natural anti-inflammatories are:
* Kelp
* Tumeric & Ginger
* Salmon
* Shiitake, Maitake, Enoki, Oyster Mushrooms
* Green Tea & Water
* Blueberries, Pineapple, Strawberries, & Raspberries
* Virgin Olive Oil & Avocado
* Broccoli & Cauliflower
* Sweet Potato & Spinach

If you need to take anti-inflammatories, in the pill form; doses of 2000mg of Tylenol & 1600mg of Ibuprofen should not be exceeded. If you take your Peg Interferon at bedtime it should help reduce side effects from the drug.

To help with mood related side effects:
* See a therapist on a regular basis
* Avoid stressful situations
* Learn relaxation techniques
* Do regular daily exercise
* Speak to your therapist &/or doctor about antidepressants

Dry, Itchy Skin or Rash symptoms & injection site reactions:
* Use Aveeno body wash & lotion to treat skin
* Wear sun screen
* Avoid tanning beds
* Take warm, not hot, bathes or showers
* Rotate injection site from week to week

Thyroid changes:
* Monitor on a regular basis during treatment

Change in taste:
* Brush your teeth regularly
* Eat small amount of dark chocolate, yogurt, or honey before meals
* Lemon in water
* Chew gum

Appetite changes:
* Eat many small meals during the day to increase weight
* Eat yogurt before or after meals to prevent nausea
* Exercise before meals
* Use nutritional supplements such as Boost, Ensure, & Glucerna (for diabetics) to gain weight
* Eat bland foods for diarrhea such as bananas, rice, applesauce, crackers, & dry toast

Hair loss &/or thinning:
* Shorter hair styles may reduce thinning or loss
* Wash hair less
* Avoid hair dryers, gels, mousses, or sprays
* Avoid dyes
* Use alcohol free hair products

These remedies should help the patient deal with the side effects from Hep C triple treatment therapy and I'm sure that I probably missed several of them...so please add them to the comment section of this post!

Side Effects - Triple Hep C Treatment

I thought I would try to cover some of the side effects caused by Hepatitic C triple treatment. The triple treatment includes Incivek, Peginterferon, & Ribavirin:

Flu Like Symptoms including:
* Fever
* Chills
* Fatigue
* Headache
* Nausea or Vomiting
* Aches & Pains in Muscles, Joints, Back, & Legs

A decrease in the Complete Blood Count of White Blood Cells, Platelets, &/or Red Blood Cells:
* Anemia (red blood cells), Neutropenia (white blood cells), Thrombocytopenia (platelets)
* Fatigue
* Dizziness &/or Fainting
* Feeling Tired
* Difficulty Sleeping
* Difficulty Thinking Clearly
* Headache
* Coldness
* Paleness
* Increased Infections

Mood Related; Depression, Irritability, Anxiety, Insomnia:
* Sadness
* Hopelessness
* Crying
* Major Changes in Mood
* Loss of interest in things you enjoyed
* Irritability
* Trouble Sleeping
* Trouble Concentrating
* Appetite Reduction &/or Stimulation
* Suicidal Thoughts
* Homicidal Thoughts

Dry, Itchy, &/or Rash on Skin caused by Incivek &/or Ribavirin:
* Fever
* Facial Swelling
* Sores in Mouth, Eyes &/or Mouth
* Severe Itching
* Skin Sores &/or Blisters

Skin Irritation at the Peginterferon Injection Site:
* Painless Irritation &/or Bruising

Change in Taste:
* Metallic Taste from Incivek

Appetite:
* Decreased Appetite
* Weight Loss
* Weight Gain

Thyroid Changes:
* Underactive Thyroid (Hypothyroidism)
* Overactive Thyroid (Hyperthyroidism)

Hair:
* Thinning
* Loss

Vision Changes:
* Decrease &/or Loss of Vision
* Blurred Vision
* Vein Thrombosis (blood clots)
* Ischemia (decrease of blood supply to the eye)

Infections:
* Prolonged Fevers
* Persistent Coughs
* Trouble Breathing
* Sinus Draining

These side effects were provided by the Charlotte, NC's, Center for Liver Disease's, training manual for Hep C's triple treatment.

Other side effects (Peginterferon & Ribavirin) include:
* Dry mouth
* Dryness of the Throat
* Shortness of Breath
* Sore throat
* Voice Changes
* Wheezing
* Husky Voice
* Coughing
* Difficulty with Speaking
* Drug Addition
* Drug Overdose
* Hemorrhoids
* Diarrhea
* Constipation


These side effects provided by Drugs.com.

There still other side effects related to Hepatitis C treatment, all of which may vary with each patient.

I will now try to give some remedies to relieve some of these side effects. It is very important to let your doctor know of any side effects that you experience, not only because he/she may be able to prescribe a remedy, but your life may be in danger!

If you have any additional side effects to add to this post, please do, in the comments section...

Treatment

I am in my 7th month of triple treatment for Hepatitis C, Type A, and I can see now why so many people don't finish the treatment. The first three months included Incivek, Peginterferon, & Ribavirin.

I developed a pretty bad allergic reaction to the Incivek and despite this, I continued the whole three months of this drug. I then continued the Ribavirin & Peginterferon and my platelets, white blood count, & red blood count continued to drop...determined to kick this terrible virus...I trudged on. I became virus negative in my 4th month of treatment and because of this late negative result, my treatment end date was moved from 24 weeks (6 months) to 48 weeks (1 year).

My doctor lowered my Peginterferon to a lower dose because my white blood count went into dangerous levels. Being a single person, I have had to continue to work through my treatment, which is rather a blessing in disguise. It has given me less time to think about how terrible I feel both mentally and physically.

The side effects of this triple treatment have been the worst part of it. Most people have thinning of hair, mine is almost completely gone, at seven months. I cry at a glance and ache really bad most of the time. It seems that I have gone through phases during this treatment. One side effect will be really bad for several months and then go away, then another one surfaces. I have had acid reflux for many years and it has damaged my vocal chords. The treatment has made my voice worse to the point that I can hardly talk, yet I still see the light at the end of the tunnel!

It was at my 3 month mark, of treatment, that I decided to quit smoking cigarettes...to help the my body become virus negative and to become unreliant on any form of crutch as I had for so many years. At this time I could see the light at the end of the tunnel because I thought that I was going to be finished with treatment at 24 weeks, 6 months, not...I had to go another 6 months after the 6 month mark. This crushed me and my plans, but instead of turning to a life of escape, as I had for so many years, I turned to my doctor's and my sister for advice and support...and here I am, still virus negative in my 7th month.

The message here is that there is a way to deal with everyday pressures and stress without turning to unhealthy escapes. One should find faith and a purpose in life and use that as a way to deal with the obstacles that life and oneself puts in the way...one step at a time!

Lou Reed

Just recently, a famous Baby Boomer, Lou Reed , died due to complications from a liver transplant. Time catches up with those that don't take care of themselves from the beginning...so please do, you will be sorry if you don't!

Baby Boomer

It has been awhile since I created this blog and I have been hemming and hawing about what to write in this blog...when all I have to do is write about my experience and hopefully you will do the same. If you don't, I should still feel better because I have had the chance to express my thoughts about liver disease and how it has effected me mentally and physically. So here goes!

I am a product of the "Baby Boomers"generation...a time when some people, including me, rejected the traditional ways that things were done. "I am untouchable and can do anything because nothing will harm me!" A "not me" kind of attitude and as a result peace and love were in the air, but so were the many evils of disease and viruses. Many people abused alcohol and drugs, had unprotected sex, and are now paying for it.

According to Genetech, the company that makes Interferon, a drug used to hopefully cure Hepatitis C, 3 to 4 million people are infected with Hepatitis C and 80% don't even know they have it because they have no symptoms. Hepatitis C is chronic and may lead to liver failure and death, if not treated. Many chronic patients have chosen or not had a choice, to have a liver transplant, and now rely on drugs to help their bodies adapt to a liver that was not intended to be in their bodies. In both cases, treatment or liver transplant, ones immune system is effected causing the patient to be sensitive to infection.

I'm done writing for today and I hope that this info helps you understand a little bit about Hepatitis C and the liver and the importance of taking precautions throughout your life, to keep it healthy!