Tuesday, October 1, 2013

Cured of Hepatits C!!! What's on the Horizon for Those Seeking treatment?

1. All pill treatment. (Ask your hepatologist or GI dr as to when these are available)
This means no more shots in your stomach! No more Interferon!

2. 100% cure rate for all genotypes
This means no matter what type of Hepatitis C someone has, it will respond to the new drugs.
There a re 5 different kinds of Hepatitis C. These kinds are referred to as genotypes in the medical community.

Yes, and BTW, at the time of this post I am cleared of the Hepatitis C virus 6 months and counting!

Thursday, February 9, 2012

Getting Your Social Security Disability Benefits Before Starting Treatment

This post has a two fold purpose:
1. To help anyone trying to get their Social Security Disability Benefits as soon as possible.
2. To raise awareness of Hepatitis C through my own treatment experience,  and the best resources I can find, and just plain telling people things I wish someone, including my doctors would have told me.

I have found the following links to be exceptionally helpful for assistance with medical expenses and even financial aid to those who qualify or just have an unexpected expense they need help with.
* Though most of this info can be found on the SSA site SSA.Gov, I am also still working on a more comprehensive guide to helping people with questions such as:
How do I qualify for Social Security Disability?
Is SSDI benefit amount dependent upon my household's total income?

And accurate information through research and personal experience these topics

  • How to apply for Social Security benefits
  • Denied Social Security
  • Social Security Disability Tips
  • Social Security Programs
  • Social Security attorneys, including such facts as the State of Virginia Bar Association is the only one in the US to recognize Social Security Attorneys and what that means to you in your city and state.
  • Protective Filing Date
  • RFC
If you are not sure your condition qualifies you for disability, please check out the list of hepatic conditions

In the meantime:

Please see the full site The American Liver Foundation .

The PDF attachment I received contained many resources. The most generally helpful for financial assistance was "Modest Needs", explained below in an excerpt from the document I received. The American Liver Foundation is dedicated to getting the word out about this epidemic which is silently reaching catastrophic proportions in the US and abroad.

What kinds of assistance can Modest Needs offer me/my family?

Modest Needs offers three main types of grants: Self-Sufficiency Grants, Back-to-Work Grants, and Independent Living Grants. The grants we offer at Modest Needs come with no strings attached and do not ever have to be repaid.
To learn more about the types of grants we offer at Modest Needs, please read about our Grant Types and Eligibility Requirements.
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Does Modest Needs charge a fee to apply for assistance?

No. For about a year, from October 2009 to October 2010, we did charge a fully-refundable $7.50 application fee as a means of controlling against fraudulent applications for assistance. However, we determined that this fee did not control against fraud as well as the other safeguards we had in place, resulted in enormous bookkeeping headaches, and caused legitimate applicants to question Modest Needs' own legitimacy.
For these reasons, we discontinued our application fee in October 2010. Going forward, Modest Needs will never again charge an application fee of any kind to our applicants, ever.

Wednesday, February 1, 2012

Chronic Hepatitis C Treatment Monitoring Algorithm

This link is vital to anyone even considering treatment for Hepatitis C. I don't care about hits as much as I care about people who need this info finding it. I'll try to put up a copy of Mayo Clinic's PDF, which is actually a flow chart showing all possible paths. Friends, I am in what is delightfully referred to as "End Stage Cirrhosis". Don't let this happen to you! Get tested. If positive, get treated! Yes, treatment sucks but it's temporary. Much better than having your life cut short. It's not because of lack of diligence on my part that I am where I am at on this chart. 2 failed attempts! I started trying when I was still in stage 1! Are you sensing the urgency??? It can start to progress at anytime without warning and let me repeat this fact. FAT DRIVES THE PROGRESSION OF THIS DISEASE. And if you have genotype 3, like me, you are especially vulnerable to this undesirable obstacle to treatment being effective. So if you are over weight, like I was, and have this disease, you may be in serious danger and still not have a single symptom. I apologize for any undue alarm to people who are not ill. But I can sleep at night knowing that I shouted it from the roof tops. God has a funny way of getting the ones who need to read this to see it. Now there's an internet marketing strategy that I'll bet the "gurus" hadn't counted on. Peace out! Talk soon, ( yes, I am still trying to get the courage up to do a video upload). But I know I will overcome this fear after my first shot.

Tuesday, January 17, 2012

I have had most of the side effects referred to in this video. I am still admittedly fearful of my upcoming treatment next month. What if I cannot keep sick people away? I have suffered greatly during my past 2 attempts and because my old doctor was too new at interferon treatment, here I am going for a 3 rd time because the first was successful but too short. The 2nd was a 3 week plunge into hell because I was overweight. Now I am ready, have dropped the weight, changed diet, going to the gym regularly and working out. I originally started this blog to help others but I think I need this blog as much as anyone may need to read my post about what to expect and how to avoid the pitfalls that may derail your treatment.
I still have some more tricks up my sleeve to offer to anyone who is experiencing severe side effects from pegylated interferon and ribavirin. Especially those who have geno type 3, which the new drugs do not work on, like me.

Yet, I am hopeful. I remember being told I looked healthier, that my eyes were clearer. That I even had a glow, although I felt like crap! Anyway, this is informational and I hope it is useful info.

Saturday, January 14, 2012

In addition to the tips previously posted for getting your disability benefits set up, you can pretty much expect that your initial application and reconsideration will be turned down by Social Security, (unless you are missing a limb or your disability is very obvious and dose not require a medical report from a physician to verify it).

Don't let this discourage you! This is par for the course. Be prepared, (keep good medical records and make sure your doctors do too), to go all the way to Appeals and have an Judge award your  Title II Social Security Disability Benefits, not to be confused with SSI, which is welfare. SSA Title II,(SSDI), is based upon what you've paid in over your entire working life. All that SSDI tax that was taken out of your check, the rate of pay, etc., determines your benefit amount up to the benefit limit, which, in 2012, is approximately $1783/month.

Sunday, January 8, 2012

Practical Tips When Applying for Disability - December 2011

Having successfully navigated through the Social Security Disability Application process, I can honestly say, I can offer some sound advice to someone who needs their benefits but has had their application denied. Below is an article that I believe does a fairly good job at letting you know what to expect as far as preparation goes. But there are a few steps missing from a practical standpoint that I felt I could offer interpretation of what the SSA notices actually mean if you have been denied and are, in fact disabled because of Hepatitis C, or any other disability that falls in the "Title II" category, (most disabilities that are not visibly obvious, such as Title 1; the blind or wheel chair bound, for example) .
1. The Social Security Administration, as part of their procedure, usually denies many application for disability that would fall into the Title II category. So don't get discouraged. This has improved much in recent years, but I know it still happens to many applicants with perfectly legitimate claims.

Practical Tips When Applying for Disability
Jacques Chambers, CLU
Benefits Consultant
Posted December 19, 2011 < (still relevant despite the date)
Leaving work and applying for disability benefits can be stressful and even traumatic. It’s hard enough to deal with Hepatitis B and/or C without adding the paperwork and the doubts caused when dealing with Social Security and disability insurance companies. Over the years of doing this work, I have found that there are several things you can do to facilitate the process.
People dealing with a chronic condition such as hepatitis rarely leave work without some notice. Unlike being in an accident that causes someone to suddenly be unable to work, there is time, sometimes even years, when you are able to work, but also realize that sometime in the future, you may become unable to work.
Plan Ahead – Once you have a diagnosis or other indication that you may have to stop working at some time in the future you should do a “Benefit Review” so you will know what benefits are available, what you have to do to become eligible for them, how you will cover medical bills and how much income you will have when you stop working. The earlier in advance you do this review, the greater the possibility of making changes to enhance your benefits when and if you do become disabled. Make sure you have all the current plan documents from your employer and copies of any individual policies you may also have. As well, get a Summary of Earnings from Social Security to see what your projected disability benefit will be.
Read entire Article at "hcvadvocate.org"

Wednesday, December 7, 2011


Resources | BetterToKnowC

The above link is by far, the best site I have found for help, resources and support at any stage of the Hep C Journey! If you have been following this blog, you know that I am starting my 3rd and final attempt at treatment in February, 2012 and I am trying to help others in any way I can. If this helps one person to avoid even one of the mistakes I have made, then it is all worth it.
Though I wish it weren't so, but anyone who knows about blogging, knows 98% of us bloggers do not make any money. No one clicks on the ads, cannot get enough traffic and I am ok with that because it isn't the reason I am writing. (Though it certainly would not hurt to make a buck or two).
"Better 2 know C" just blows away anything out there as being a concise, one stop does it all site for any perceivable need or concern anyone with this disease or loved ones would want to bookmark.
I'll be getting my courage up to start and possibly video diary some of my experiences of treatment with Interferon and Ribavirain and possibly a new drug trial. So please come back often as there is much helpful info, chat, and support coming. Please feel free to email me or ask in the form of a comment, any question within reason and I will do my best to get back to you as soon as humanly possible.