Hepatitis C, Treatment Diary

First Video Post, Sorry about the audio.

2012-03-05T10:51:00.000-08:00

This is my first video post. I apologize for the audio and just plain nervousness. I'll try to do better on the next one.

Getting Your Disability Before Starting Interferon Treatment

2012-02-09T15:11:00.000-08:00

The main point of this blog is to raise awareness of Heptatitis 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.
*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.

I am still working on compiling this information so please check back and thank you for your patience. I have personally "slugged it out" with Social Security and have been awarded lifetime benefits and lump sum cash awards.
If you are unable to work because of a condition you are not sure your condition qualifies you for disability, think again.
The process is much faster than when I had to do it in 1996. You could have your first check within 6 months if you know what to do! Find out what the lawyers won't tell you without a commitment.

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. Like myself, 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.

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.

Chronic Hepatitis C Treatment Monitoring Algorithm

2012-02-01T19:18:00.000-08:00

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.

2012-01-17T16:22:00.000-08:00

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.

2012-01-14T13:42:00.000-08:00

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.

Practical Tips When Applying for Disability - December 2011

2012-01-08T08:42:00.000-08:00

Having been through the Social Security Disability drill, I can honestly say, I can be very helpful 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 kn ow what to expect as far as preparation goes. But there are a few steps missing from a practical standpoint that I fell I can offer assistance if you have been denied and are, in fact disabled because of Hepatitis C. I plan t stay as active as possible throughout my treatment. Hope this helps.

Practical Tips When Applying for Disability

Jacques Chambers, CLU
Benefits Consultant

Posted December 19, 2011

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.

ON LEAVING WORK
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"

Practical Tips When Applying for Disability - December 2011

BetterToKnowC

2011-12-07T18:09:00.000-08:00

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.

Best Site for Hep C Help

2011-12-07T17:51:00.001-08:00

Resources Frequently Asked Questions (FAQs) Diseases like hepatitis C can be confusing. To help set the record straight, here are some answers to common questions people have about hepatitis C. Hep C Made Simple: The Basics This video answers basic questions about hepatitis C and the liver. It can help you better understand what the liver does, why the liver is important, and how hepatitis C damages the liver. Getting Started Online: The Search In this educational series, you will learn some ways to best search for healthcare information on the Internet. Hep C Made Simple: Know Your Status Many people with hepatitis C have no symptoms and don't know they have the virus. Watch this video to learn why it's important to get tested even if you don't feel sick. Take the Hep C Screener Many people are at a higher risk for hepatitis C, like “Baby Boomers” born between 1946 and 1964. Use this tool to see if you are at an increased risk for hepatitis C. Guide to Getting Tested There are many options available for people who are ready to get tested for hepatitis C.

Protons, Electrons, and Hepatitis C

2011-11-14T13:45:00.000-08:00

Protons, Electrons, and Hepatitis C

Well, technically that title should be PROTON, ELECTRON, and Hepatitis C, the first two words being the names of two recent studies of PSI-7977, a potential new drug for treating hepatitis C virus (HCV).

The Latest Findings

There’s a lot to talk about with PSI-7977—mainly in light of study resultspresented a few days ago at the 62nd Annual Meeting of the Association for the Study of Liver Diseases (AASLD) in San Francisco. So let’s get the elephant in the room out of the way before we go any further: I do not know what POSITRON and ELECTRON stand for. Nor do I know what FISSION, PROTON, and ATOMIC stand for—but more on that later. All I can tell you is that at some point in the history of drug development, pharmaceutical companies and/or clinical trial cooperative groups decided that acronyms were necessary or advantageous for some reason, paving the way for many a BLT, BOLERO and COMFORT for years to come.

PSI-7977 is kind of exciting. In the PROTON study, this drug, a nucleotide analog, was combined with the then-standard of care, pegylated interferon plus ribavirin. (Since PROTON was done, telaprevir and boceprevir were approved, changing the standard of care.) In PROTON, 96% of patients had a sustained virologic response (SVR), which is the measure of cure for HCV. Now, to balance this, is a wonderful moment of parsing the data: 96% is impressive, no doubt, but it has to be mentioned that the total number of patients in that study was 25, with 24 patients being actually evaluable. It was an early-phase study, so that small number of patients is not unusual, but most reports about the latest PSI-7977 results are highlighting that initial 96%, and it’s hard to find the actual N of the study. Here is a PDF of the full report of the PROTON study.

After PROTON delivered its encouraging results, Pharmasset, the maker of PSI-7977, launched ELECTRON, a phase II study in which a number of patients were given the experimental drug plus ribavirin. And that is the key: 10 of the enrollees received NO pegylated interferon. And guess what: the combination worked. All 10 of those HCV patients had an SVR.

Now, a couple of things to explain. First, these were patients with genotype 2 or 3 HCV. The reason why these genotypes were selected is because they tend to be highly responsive to interferon. Wait – so, why were those the people who were not given interferon? Well, the logic was that if PSI-7977 plus ribavirin didn’t work, those patients could be more easily rescued with a course of pegylated interferon + ribavirin than HCV patients with, say, genotype 1, the most difficult to treat variety of the disease. As it turned out, that rescue therapy wasn’t needed, but still, the logic is interesting when it comes to understanding drug trials.

more: Protons, Electrons, and Hepatitis C

Hepatitis C:"Joe, it's the end of you. Fat drives the progression of the disease."

2011-11-09T18:18:00.000-08:00

Hello folks, I have to admit, this is a pretty down day for me. The gravity of having a life threatening illness sometimes gets the best of me. I am not looking for sympathy, but it is nice to know that I am not the only one. I want to write today about a fact that I learned all too late for me, but it may be just in time for someone out there who happens to read this in search for answers to the Hepatitis C dilemma. I was over weight when I was re-diagnosed with Hepatitis C, genotype 3, in 2000. Although my GI doctor frowned about my obesity, (ironically, he is now obese!), I do not remember him saying anything more than cautioning about the usual consequences and said, "... you are in stage 1with minimal scarring to the liver. You'll probably die of something else altogether". In 2006, he did a liver biopsy and still stage 1. In 2009 the bomb was dropped, stage 2-3 and still no instructions about my weight. (I'm getting to the point, thanks for your patience). In January of this year 2011, I was referred to an end stage hepatoligist, (a liver specialist), in my city once a month. But I was drawn to this other doctor in Oakland, about 40 miles away. He said,”Joe, it's the end of you. Fat drives the progression of the disease and you are now stage 4 of 4. You have no doubt a fatty liver and that is why your 2nd treatment attempt failed.

Stunned, I left the office and drove home in a daze. How could this be? Why didn't anyone tell me? I will lose this weight! I knocked off 50 of the 60 lbs. I needed to lose in 6 months with diet change and exercise. Weight Watchers is a good method because you can eat whatever you want and still hold yourself accountable.

When I returned to the doctor in Oakland, he was astonished. "You look so much younger! This is huge!"

So the bottom line is now that I have lost the weight and am in the best shape ever, I have a good chance of treatment being effective, but I still have only around a 50%-60% cure rate because of the prior attempts and no new drugs that work on genotype 3 as their are for other genotypes of Hepatitis C.

I have a resting pulse rate of a runner, but it may be all but academic. My hope is that I can save someone else like I could have been saved by knowing this information. Yes, it may have progressed anyway, but I know in my heart of hearts, it was the fat that made me have to bail in the 3rd week of my 2nd treatment attempt. There is a passage in the bible that says, "Without knowledge, my people perish". I'll get the chapter and verse and add it in later but I must post this now!

Waiting for treatment, diet, excersise, and tests

2011-10-12T14:11:00.000-07:00

Of the many preparations I am currently undergoing for my upcoming third attempt to rid my body of the deadly Hepatitis C Virus, the hardest thing has been…, well, everything!

Change diet to low fat, low sugar, low salt, high fiber and all at Weight Watchers Points Plus daily value of 36 or less. (Something others facing interferon treatment should know that you physician may not know or tell you is that my second attempt at treatment failed because of a fatty liver and being obese. I was completely down for the count within 3 short weeks due to severity of side effects. This was mostly due to being over weight.

Regular exercise: Join a gym or be disciplined enough to work in some type of effective program at home. (More about expansion on these bullet points later on).

Stop smoking: you will not even be considered for a liver transplant if you are or have been smoking within the prior year!

For myself, (this is a preference but I think a major help in tolerating side effects), and many of you who have pain from treatment, (flu-like symptoms, aching joints, muscles and mouth pain), A good pain management program which includes, Narcotic Pain Medicines! They are the only thing that works and eases the suffering much like a cancer patient, hepatitis C in later stages as mine, (stage 4 of 4), there is much pain and my workouts would have remained a fantasy without my pain meds. Yes I will probably have to be weaned off them if I am cured after the treatment but the upside, (saving my life by staying on the treatment for the whole coarse), definitely out weighs the downside. Besides, most people who take even Oxycontin as directed do not become addicted. It’s when you start to mess with the doses, i.e., cut the pills in half for more time release at once, taking more than prescribed, etc. that you get into trouble.

I know this sounds extreme. This is my 3^rd time around. This first treatment worked using the methods I mentioned above, but the first round, (back in 2006), was 6 months. Had it been for 1 year, I would have been cured the first time.

Unfortunately, I have what’s called “genotype 3” a sub category of Hepatitis C that although it has a higher response rate, the new drugs being touted do not work on this genotype. So it’s good ol’ Peg interferon Alpha 2A for me unless they come up with a new drug before Feb. 2012.

This is my first post in this new blog/forum. The intent is to help others avoid some of the pitfalls I fell into head first and to hopefully encourage each other through the hell of interferon treatment. Most people aren’t fortunate enough not to have side effects form interferon. But hey, if you’re out there and you’re so inclined, please feel free to post a comment.

My Hepatitis C Treatments: "A Work In Progress"

2011-09-30T16:00:00.000-07:00

1. The first treatment attempt was unsuccessful even though I responded well and viral levels were undetectable. The 6 month treatment was not long enough, (in hind sight), and it came back in 6 months.

2. The second treatment was discontinued within 3 weeks as my being obese and resulted in a fatty liver, which increased the side effects to an unsafe level.

3. Now that I have shed the pounds, changed my lifestyle to include regular exercise and diet changes largely due to Weight Watchers, I have a good chance of success in my 3^rd and final attempt to be rid of this monster that threatens my quality of life and ultimately, my life itself.

This is an article that tackles head-on, the widely missed issue of the new drugs not working on certain genotypes of the disease. (Genotype 3, (the one I have), does not respond to the new drugs).

http://blogs.plos.org/workinprogress/category/clinical-trials/

I know I am really going out on a limb, posting such personal info, but I want to do something worthwhile and above all, (I hope), helpful to others facing this devastating disease and hopefully keep my sanity in the process. Please come back and feel free to comment if you or someone you are close to is facing interferon treatment.