Friday, April 16, 2010

Rob's Story

Here's one for ya Betty. I aquired HCV as a corpsman back in the Vietnam era. By a needle sticks. I received 10% disability for HCV after fighting the VA for 6 years. I just received 0% rating for cirrhosis. As they say having HCV that long I should have cirrhosis. Also saying that I only have mild pain. Well the VA at there own hospital in SLC UT shows I have varices lesions and uncontrolled GERD all associated with HCV.Verified by ct scan on two separate occasions. According to their procedures I should be rated at 100% disabled. But they didn't have any of the information that I just described. Because it all came to light after 2004. It appears they can't check computers from one part of the Government to another I guess. I sent the VA the information. As I always save copies just for situations like this. I sent it by fax and certified mail. Now we will see if they are true to their word and raise my percentage. They tell me it takes two weeks to get the information to the right people. So to be safe I sent copies to Senator Akaka of Hawaii as he is head of the veterans subcommittee. As well as my Sen Orrin Hatch of UT. So if I get denied someone should know.I don't know if the VA can get out of this but I will let you know. Good luck on your ventures I wish I were strong enough to help like they say I am. Rob

April 11, 2010 1:39 PM

Caring Ambassadors Hepatitis C Program - Randy Dietrich

"My name is Randy Dietrich. I have a beautiful family, wonderful friends, a great job, and perfect health - or so I thought. In January 1999, a routine annual physical examination resulted in a shocking diagnosis - I had hepatitis C. After the initial reactions of panic, denial, and fear, I set out to learn as much as possible about the disease and the various treatment options. Much of the information, however, was either incomplete or contradictory, no doubt due to the fact that the virus causing the disease was only recently identified. It was then that I realized that others with hepatitis C were just like me -- confused, worried, and frustrated. When I couldn't get all of the information I wanted about hepatitis C from the health professionals with whom I spoke, I realized I would have to do my own information search. I also wanted to share what I learned with others living with the disease, and with the healthcare profession at large.

I went to my employer, Jim Possehl, president of Republic Financial Corporation, and together we brainstormed the challenge that lay ahead. In our search for answers, we jointly founded and funded the Caring Ambassadors Hepatitis C Program. I chose to research my options and find answers -- not only for myself, but for the millions of other people world-wide who are also living with the disease. I knew that in the short term I could do things to improve my health while on this search. My regiment to start healing my body has been organic foods, juicing, no alcohol, no coffee, no refined sugar, no red meat, and a positive outlook. I am working with a chiropractor, an acupuncturist, and other bodywork professionals, in addition to keeping up moderate exercise. Besides these common-sense measures for a healthy liver, what else should I be doing to allay the virus?

One of my strong beliefs is that knowledge empowers. Only when you have all the facts can you make an informed decision. I think that disease so they can take charge of their own health. We formed the program to make a real difference for people living with hepatitis C. as we go forward, the ways we can make these "real differences" will become more apparent to us. I believe that by helping others, I will help myself, and that, by helping myself, I will help others. We are all in this together, and together we will climb the mountain that cannot be climbed alone."

10 Truths I Believe to be Self-Evident

My journey with hepatitis C has been one of discovery and learning. There is much we do not yet know about hepatitis C. However, in reflecting on the major lessons I've learned in my journey with hepatitis C, I have come up with a list of "truths." Borrowing from the words of Thomas Jefferson in The Declaration of Independence, I hold these truths about living with hepatitis C to be self-evident.

1. It's the immune system!

The 1992 Clinton-Gore campaign made the saying, "It's the economy, stupid." part of modern American culture. Not to be insulting, but when it comes to chronic hepatitis C, it's the immune system, stupid. The immune system is the body's defense against viruses. We know the immune system is responsible for clearing the hepatitis C virus from the body. We also know that much of the liver damage that occurs with chronic hepatitis C is mediated by the immune system. Therefore, it follows that anything we can do to enhance the function of the immune system is potentially helpful. Conversely, anything that impairs the immune system is potentially harmful. Many of the other "truths" I include in this list ultimately relate back to the immune system.

I'd like to add a note of caution to the statement I just made about doing anything you can to improve your immune function. It is very easy to fall into the pattern of thinking that if a little of something is good, then a lot must be even better! However, this type of thinking can get you into trouble. As discussed earlier, excessive vitamins, nutritional supplements, herbs, and even exercise can potentially do more harm than good. If I had to give one word of advice to others with chronic hepatitis C, it would be "moderation."

2. You are what you eat.

This is a fact of life. With the help of the liver, our bodies transform what we eat and drink into the very substance of our bodies. While we may want to think what we eat doesn't matter, logic and basic biology tell us otherwise.

3. Stress management is important.

Scientists have known for many years that stress depresses immune function. As noted in number 1, anything that interferes with immune function is potentially detrimental to people with chronic hepatitis C. Recognizing and managing your stressors is an important way to influence your course with hepatitis C.

4. Protect your liver!

The liver is a vital organ. It processes nearly every substance that enters the body. The liver is the primary target of the hepatitis C virus. Anything you can do to decrease the demands on the liver while it is under siege from HCV is potentially helpful. You can protect your liver by eliminating alcohol from your diet, avoiding toxins such as smoke, pollutants, and chemicals, limiting your intake of complex chemicals such as medications and supplements, and eating a healthy diet.

5. Time is on your side.

For the vast majority of people, chronic hepatitis C is a very slowly progressive disease. With the exception of those people who are diagnosed with advanced cirrhosis, hepatitis C is not an immediate threat to your life. Moreover, for most people with HCV, it will never be a threat to life. In other words, most people infected with HCV will not die of the virus, but rather with the virus. Please know that I am not minimizing the challenges of living with hepatitis C. I am trying to point out that most people with hepatitis C have time to make choices about how to manage their disease and change their lifestyle, and that hepatitis C is not an automatic death sentence.

6. You are as you think.

As with all life experiences, your outlook, perceptions, and attitudes influence your experience with hepatitis C. No one wants to get hepatitis C. But once you have the virus, you are free to choose how you will react to having it. Many emotions can come into play when a person is first diagnosed including anger, fear, helplessness, shame, and others. But after the initial period of adjustment, it is up to you how you choose to live with your diagnosis. Persistent anger and feelings of helplessness may make living with HCV quite difficult. A positive outlook and hope can make daily life much easier and more enjoyable. Keep in mind that no feeling in and of itself is "bad" or "good." What gives your feelings their importance is how they affect your daily life, and how they contribute or detract from your sense of well-being.

7. Body and mind work hand-in-hand.

One of the most amazing features of human beings is the intricate and inseparable interactions between the body and the mind. Physical symptoms such as headaches, sleep disturbances, and changes in appetite that accompany depression and stress clearly demonstrate the fundamental relationship between the body and the mind. These interactions are ever-present in all people. Therefore, practices that help us achieve and maintain a healthy balance between the body and mind have the potential to improve both our physical and mental sense of wellness. A variety of practices can enhance the health of our mind-body relationship including exercise, healthy body weight, meditation, prayer, visualization, and many others.

8. Information can be healing.

Hepatitis C is a serious illness. The overwhelming reaction for most people when they are first diagnosed is fear. We all fear the unknown. Fear is very stressful, and we know stress is unhealthy for the immune system. In my experience, the best antidote to fear is information. The more I learned about hepatitis C and my options, the less fear I had. In this way, information can be healing. However, be aware that there are many unsubstantiated claims about so-called "cures" for hepatitis C. The unregulated nature of the Internet sometimes makes it difficult to separate fact from fiction. I urge you to be cautious, and do everything you can to make sure the information you gather is credible.

On a related note, I offer another word of well-intended advice based on my personal experiences. While information can help us overcome our fears and regain a sense of control, too much of a "good" thing can erode these benefits. In other words, get the information you need to feel comfortable, but be careful not to let your quest for information about hepatitis C take over your life. As with all things, moderation is usually the best and healthiest course of action.

9. Support helps.

All of us struggle at different times with our inborn need for independence and our social, interdependent nature. But in times of stress, one of our greatest sources of relief is recognizing our need for others, and taking advantage of the supportive resources available to us. An illness can be an isolating experience, but you are most certainly not alone. There are many sources of support available such as family, friends, individual counseling, and Internet-based and in-person support groups. It is a personal strength, not a weakness, to recognize what you need and to seek help. Keep in mind, too, the positive effects of support run both ways. By that I mean, you may find great satisfaction in both receiving support and later, by offering your support to others. Giving and receiving are two sides of the same valuable coin.

10. There is no magic bullet.

It was largely wishful thinking, but when I was first diagnosed with hepatitis C, I thought I would be able to find a "magic bullet" - a medicine or treatment that would quickly and painlessly clear my body of the virus without interrupting my life or requiring me to make any changes. But the truth of the matter is that at least for now, there is no magic bullet, no quick and easy fix for hepatitis C. Furthermore, no single medical discipline has "the answer" when it comes to hepatitis C. Like most of the chronic illnesses that currently affect millions of people worldwide, living with hepatitis C may require us to make some difficult choices and changes. But the good news is that when you accept your responsibilities with this condition, you are rewarded by regaining a sense of control and self-determination with respect to your circumstance.

Dana Dietrich (Randy's Daughter)

"The Day I Found Out My Dad Was Ill"

"It was the day before my birthday, and I was out having a snowball fight, girls versus boys (we were beating them good). My dad pulled up in his car and honked, right as I turned to see him, a huge snowball hit me right in the face. Ouch! When I got into the car, my dad was on his cell phone. I waved good-bye to my friends and we left.

For about ten minutes, we drove in total silence, then my dad turned to me and said, "I have something I need to tell you.

"Right off it was bad. He went on, "About a month ago, I took a new kind of blood test and found out that I have hepatitis C, it is a disease that harms the liver. And I believe that if I go on this special diet, I will get better" I was totally shocked, I mean, my dad, my perfect dad had hepatitis C. Then I thought of something else that he had said, "I will get better"! My dad is very strong and when he gets better, it will be the happiest day of my life."

Randy Dietrich is founder of the Caring Ambassadors Program Hepatitis C Program
CAP is proud to announce their 4th edition of Hepatitis C Choices

"God Bless the VETS" by Julian Lewis

In 1966 being a boy of 17 I joined the army with my father co-signing for me. I took my physical and quite naturally the army said I was healthy to serve, Fort Bragg here I come. As every one else I went through the basic training "Shot Drill" routine and every one I saw was bleeding from their arm. We were told not to move or the gun could cause serious damage, so being nervous I kept looking ahead of me and saw guys arms bleeding, I never saw any cleaning of any gun while I waited my turn. During my basic training I was forced to dry shave in formation with someone’s razor, now 17 years old I hadn't and didn't shave, but I guess my drill Sergeants seen some peach fuzz.
After I finished my basic I was sent Fort Leonard Wood Missouri to do my advance training. I was training to be a water purification specialist. Once again we were doing our low crawl under barb wire fence which caused quite a few cuts with blood coming out.

After I finished my "AIT" I was sent back to Fort Bragg helicopter unit. They got orders to go to Vietnam and I was too young so they shipped me to another company at Fort Bragg. A while after I had orders to go to "Vietnam" but first I had to take more shots, Republic of Vietnam Training, and other combat readiness training.

I arrive in Vietnam and got processed in. I was assigned to the 520Th engineering Fire Department, did I mention I had no training in putting out fires. Being young with little sexual experience I went to our village in Tuy Hoa where I was stationed and seeing the girls there. Well I had no girlfriend or wife at home so I went to the village around 3 times a week. I was diagnosed and treated several times for "Gonorrhea" which is documented in my military records. I can tell you for a fact our hospitals were not all that clean or sanitary, but hey they did their job and kept soldiers alive.

The next 6 months I was sent to a place called "Moc Hoa" still in the fire department. There we lived in tents and so was our sick bay, not at all clean or sanitary but they did their job. Quite naturally I had to check out the village and your are right, caught "gonorrhea" a couple of more times. Don’t know if that ever got documented.

So now I am back in the USA at Yuma Proving grounds as a firefighter. I flew in a helicopter as a crash & rescue for a helicopter Lockeed testing for the army. Little did I know it was the Apache helicopter we were chasing to rescue any one if they crashed. So now my service obligation is coming up. I had to do what they call a "processing out”. All I got were papers to sign but the hospital was supposed to give me a physical. They claimed they did and I was in great health and released me in 1970 with an "Honorable Discharge". I had gone to the hospital several times complaining of severe abdominal pain, tiredness, itching all the time, sleepiness. But nothing ever happened.
I am now a civilian and move back to North Carolina. In 1970 I did what they call an "Agent Orange Physical" at the local VA hospital. Once again I complained of abdominal pain, tiredness serve itching and sleepiness and once again got a clean bill of heath except for a spot on my lung, but nothing never happened.

I now move to New Jersey (long story) and there I met my wife. We got married in November of 1980 and I was married to her for 10 years (another long story). The whole 10 years I was faithful to her but we got a divorce and I met my now wife in 1980 and we have been together all this time. During my first wife I went to doctors several times for being tired all the time, said I had too much "Hemoglobin”, he gave me some medicine and problem went away.

In 1983 move back to North Carolina to set up home for girlfriend in New Jersey and me. In 1985 I had severe abdominal pain and went to the emergency room. They discovered I had gall stones so the gall bladder had to be removed.

In December 2005 I was getting dizzy getting up and down. Went to my family doctor and he sent me for blood work and x-ray for he felt something in my belly he didn't like. He suspected "lymphoma cancer" so he sent me to an oncologist. In February of 2006 my oncologist sent me to a gastro doctor, their we found I have Hepatitis C and positive for Hepatitis B antigen. I applied to see a VA doctor and was sent there in about 2 to 3 months. Then I saw my VA doctor which is an Infectious disease specialist. He is great. After seeing my oncologist for over a year and seeing my VA doctor I decided to file a claim with the VA in 2006 based on air injection shots. While gathering my documentation and medical records I discovered that more cases were approved by the VA for "High risk sexual activities" with sexual disease transmitted so I went that route instead. It only took them a few months to deny me,” December of 2006".In January of 2007 I filed a "Notice of Disagreement" and requested a DRO hearing at my local VA.In January of 2009 I was approved for 20% for Hepatitis C&B with liver cirrhosis based on "High risk sexual activities”. Around March of 2009 I was informed by my VA doctor my last MRI showed I now have "Liver Cancer”. I filed for; "Hepatocellur Carcinoma" and August of 2009 was approved 100% for live cancer as secondary from Hepatitis C. In May of 2009 I had what they call an ablation done on my liver. I was then being evaluated for a liver transplant.

Here it is 2010 and I am doing blood work, MRI, heart stress test, physiologic test to see if I am fit to have a liver transplant. On April 6th 2010, I get a letter from the VA stating they are reviewing my claim and I should send them any evidence I may have to support my claim. Today 4/16/2010 I get a letter from the VA stating I have a C&P examine 4/20/2010 at my VA hospital. What do they expect to find, cirrhosis does not go away, liver cancer does not go away and without a transplant I am still in the same shape only worse then when they approved me 100% in the first place. Go figure.

Now I do not know what will happen 4/20/2010 but why put someone through all of that again. They are bringing back stuff I want to forget. The VA legal system is really messed up, but I can assure you the doctors I am seeing really care and in my book they are great.

Thanks for reading my story. I am not 100% sure if all the dates are correct and sorry for my misspelling. I hope you can get someone to listen for some of the VETS gave their life for what they call "America”. I was one of the fortunate ones to come back all in one piece. I used to say "God Bless America" now it has changed to "God Bless the VETS".