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Showing posts from 2007

Sharing My Experience With You

A lot of you have known me for years, I have been learning and listening to you since 2003, I have TX'd 6 times, and was either a non responder, a relapser,or considered by some as even a TX junkie ! lol Well as of Friday I am officially 9 months SVR post TX. My 6th TX was INFERGEN Daily 700 days 700 shots . I was taken off due to complications and in March of 2007 I was told I relapsed. Friday's news was the March PCR test was a false positive. That means I am now 9 months undetected. The shock is still sinking in, but somehow I felt all along I would be healed, I asked then I thanked God everyday. I was an 11 meld score and now only a 7. All labs ast alt's are in the normal range. I am living proof that the dragon can be slain, I am living proof that if you never give up your chances of winning are greatly improved. I want to help anyone I can to make it through TX. I realize for many it isn't possible, but I also know with an experienced person to share with makes al

Words of Wisdom (From Chuck)

And yes, as we continue on our journey there seems to be times when it is like life is working against us as we fight our way to the end of our goal. That is when we look to our support mechanism that we have put into place. That is when we discover that there is a team of people right there to help us through. And some of these people have done what you are now doing before! What a joy it is to discover that others found the journey as strange as you do! That is when you know that you are not alone and that this journey can be completed just as others have done. But then at times one might think that every human is different, so how could anyone else understand what you are going through? And to a point this is true. But every one of us that has felt the side effects of the treatments understands them well. Some have faced the exact feelings that you might be going through right now. There is a kind of power in the collective consciousness of those who have been or are still in this f

Age

I like the theme for today, the quotes are cool too. Numbers mean absolutely nothing to me years- centuries- age- time- money- IQ- census- statistics- calculus- astronomy- leap year ! Numbers are man made, and therefore unreliable. I choose not to allow them to rule my direction, it is giving away the natural born spontaneity, our imagination is limited when numbers are allowed to rule. Why count the planets and the stars and give them ridiculous names they don't belong to us.The numbers game made it possible to get to the moon and the planets but why? We are never going to go there and live it is impossible to survive. The only reason we are there is to cause the final mass destruction of earth. Numbers. Age is also limited by numbers, we are born and told that we have so many days to live, and we believe that crap. That's why we give up. It didn't take me 52 years to figure all this out, I have always known as a child. Can't wait for the oh if it were so simple bull t

Lou Founder Of Hep C Out Of Bounds . Org

My name is Lou. I started HepC Out of Bounds about three years ago. Shortly there after Kat joined me as the Co-host and that is how it has been ever since. I had HepC, geno 2b, treated for 24 weeks and achieved SVR and have been clear ever since. I run a large HepC support group in Massachusetts which many forum members here are also a member of. I sit on the board of the Hepatitis C Coalition of Massachusetts, an advisory board and a couple other HepC related entities. I am very active in HepC Advocacy and that is how I spend most of my free time, and I love it. I live in central Mass, I am 49 years young and believe I will be alive when a vaccine for HepC is created. I hate the dragon and have dedicated my life to stopping the virus. He picked a fight with me and I will never forgive the bastard. However I am a realist and believe I know what this will take. It is a long road. Welcome to OOB! Who are you? Lou, Co-host of OOB.org

Hepatitis C Virus wiil peak in 2015

Ok , you find out you have hep c in your blood, you go through the motions, where when why how did I get this ? You may experience some panic, and fear that you are going to die, many things go through our minds when we are told it is hep c . This is meant to help you as you go through these devastating emotions, first thing you do is find a good place to learn and listen to other hep c survivors, it is truly the best thing you can do for yourself. Doctors and nurses handle you in a medical manner, they are much too busy to sit down and answer every single question you might think of, some have the best knowledge and the bedside manor of a stump. That is why we are here to help you understand what is going on inside of you and hopefully suggest some things to make this as smooth as possible for you. We at Out Of Bounds have been where you are we realize the confusion and worry, it is our goal to show you the positive side of this diagnosis. Many people are curing, many are not , it is

Newly Diagnosed

What happens when you get the news Via Doctor or Red Cross ? It seems we all have our own coping mechanism's , mine were disbelief, there must have been a mistake ? Shock Denial, Anger, Grief, Panic, Fear, Guilt, all the shock has turned into a reality, then follow steps 1 through 9 again and again. How did I catch hep c ? Am I contagious ? Who should I tell? What are my options? Why me? How long does it take ? Feelings of uncleanliness Lowers self esteem Fear of telling family and friends As I am typing this I imagine all chronic illness come with this emotional let down. The next step was to arm myself heavily with all the information I could find. knowledge is power, Reaching out to a support group , is key to the rest of our walk through this hardest thing we have ever known in our lifetime. Board Certified Hepatologist's that is very important because they are loaded with the latest treatment options for you, Do not waste time with a family doctor or a Gastroenterologist

Latest news:

"Hep C Out Of Bounds" .org . The Hepc OOB “organization” is involved more into advocacy and that is the direction we are taking with that facet of our work and the OOB.org site. I really do not want, nor can we have an interactive forum like we are accustom to on a site that is associated with these various .orgs. We will be closely associated with the Massachusetts Hep C Coalition, the American Liver Foundation, several hospitals, medical professionals and we are in discussions with some Universities. This along with the fact that we are about to begin in October a high school education program. We will be having booths at some high school and college “health fairs.” We will also be making some formal presentations at schools and universities. This will be done with the assistance, cooperation and involvement with several state agencies, the Hep C coalition and financially supported in part by some of the Pharmaceutical companies. Th

"My Story"

This is my story, in a condensed version... 1992 I found out I had hep c, I treated four times with the alpha interferon which was the hardest time of my life. I was a non-responder. Next treatment was 18 months of Pegasys and copegus, I had cleared in the 10th month. Finished out 16 and soon relapsed. Waited two months and went straight to infergen 700 shots in 700 days, I was clear from the fifth week. As soon as it was over, I relapsed again. Updated Information=The "Relapse" in fact never happened My test results came from the University Hospital, and they were not correct, I'm not sure if someone elses blood contaminated my test or not. I wanted to clarify that my doctor Bennet Cecil was not responsible for the test errors. I'm a 1a stage 3-4 cirrhosis. I contracted the disease from a blood transfusion in 1984 in Florida while having complications with a tubal pregnancy. I cannot treat again until something new comes out. I'm planning on being evaluated for

Links:

Below you will find a few different links that you will benefit from if you wish to inquire about Hepatitis C and Treatment: http://www.hepcoutofbounds.org http://www.hepcstraightup.com http://www.pegasys.com http://www.pegintron.com http://www.rxassist.org/register/patient_reg.cfm http://www.hepatitisdoctor.com http://www.nlm.nih.gov http://www.henryford.com/body.cfm?id=33946 http://www.mayoclinic.com/health/hepatitis http://www.pubmedcentral.org http://www.liverfoundation.org http://www.unos.org http://www.clinicaloptions.com http://www.lola-national.org http://www.liverhope.com http://www.transplantfund.org http://www.hepatitis-central.com http://www.hcadvocate.org http://www.hepcchallenge.org http://www.intermune.com/wt/home http://www.infergen.com http://www.medicinenet.com http://www.epidemic.org/ I know that you will find useful beneficial information from the resources listed.