Tuesday, March 31, 2009

Applying for Disability Benefits Online

I was able to submit my Social Security Disability application and disability/work history report online, which is a service the Social Security Administration (SSA) recently instituted. Applying online is expected to speed the review process - I've been told it can take three to five months! ouch!! - so my fingers are crossed.

The application process wasn't difficult, but it was quite time-consuming (I spent at least two hours completing the report). It asked for names and complete contact info for all of my doctors, lists of tests that have been conducted, dates (this was challenging because I didn't document my transplant experience in detail), symptoms and more. A word of advice: If you're going through this process, keep a record of every doc, test, procedure, result, you name it. I kept copies of reports and other paperwork, but additional detail would have made it much easier to complete the report.

Another word of advice: You must complete TWO SEPARATE DOCUMENTS - the Adult Disability and Work History report and Disability Benefit Application. I didn't pick up on the distinction until the end of the application process and could easily have missed the application document(for crying out loud - the disability report was so long, I thought surely it was all that was needed!).

When I submitted the application and report, I was directed to print 13 copies of the medical release form, sign them and drop off or mail them to my nearest SSA office. A couple of days later, I received a letter from SSA telling me it had received my online documents and that I needed to submit the medical releases (although they didn't request 13 copies; instead, the envelope included four copies of the release). Deciding to err on the side of caution, I took 13 signed copies of the medical release to my local SSA office and delivered them to a rep. I was told to look for more mail; my questions about when and what would be next were all answered, "Look for a letter." So, I'm waiting for mail.

I advised my local doctor and transplant coordinator that I'm applying for disability benefits and to expect requests for documentation, etc., in hopes that they will respond quickly. I'm guessing data collection is the next step and I'd hate for the process to get hung up because medical information isn't readily available.

I'll keep you posted.

Photo by Giuseppe Acquaviva

Monday, March 23, 2009

There Might be More to My Liver Biopsy Results than Originally Thought...

Plasma in the liver tissue from last month's biopsy? That's why my most recent set of labs included a test for autoimmune hepatitis? And it looks like the result was positive? What?!!!

So I discovered last Friday. I ran to my computer, as I do, and spent an hour or two Googling away, a frown on my face. Here's what I found on WebMD.com:
Autoimmune hepatitis triggers the body to attack its liver cells, as if the liver cells were harmful foreign bodies. Patients with a combination of HCV and autoimmune hepatitis generally suffer from more debilitating symptoms than patients with HCV alone.

Well, awesome. My body might be fighting itself, in tandem with Hep C. We're a bit alarmed and worried; I need to find my inner peace and patience as we sort out this latest wrinkle. And I'm so damn tired of the "surprises," none of which are pleasant. Oh - my liver enzymes are higher than ever (ALT is over 500!). More blood work next week will provide answers, but I have no talent for gracefully waiting.

Do you know anything about autoimmune hepatitis? If yes, please leave a comment. The more information I can get my hands on, the better.

Artificial Liver Shows Promise

You've heard the stats: Each year fewer than 6,000 liver transplants are performed, yet 27,000 more people die from liver disease. One way medical researchers hope to save more lives is by developing an artificial liver that will help patients suffering an acute liver episode to survive until a transplant can be performed.

Six-year-old, California-based Vital Therapies, Inc. is developing ELAD, "...the first human cell-based bioartificial liver... (that) provides support for patients with severe liver failure by processing toxins and synthesizing proteins and metabolites that are key products of normal human liver function."

Although similar to kidney dialysis, a viable liver substitute must perform the organ's chemical functions as well as filter toxins. ELAD uses human liver cells as part of its design, hence it's description as a "bioartificial" device. Very 21st century, albeit a bit creepy.

ELAD has already saved lives and further studies get underway later this year. Fingers crossed, everyone. With advances like this, can man-made replacement livers be far off? I surely hope not.

Sunday, March 22, 2009

Next Stop on the Liver Transplant Rollercoaster: Social Security Disability

I haven't worked for two-and-a-half years. Never in my wildest dreams would I have imagined it would be so, considering that I moved away from home at 17 and earned enough to support myself for nearly 30 years (and support my two children, without financial assistance from anyone else, for six of those years).

I quit working about 10 weeks before my liver transplant and haven't been consistently healthy and/or energetic enough to resume full-time work. Or even part-time work, for that matter. Debilitating fatigue is the main culprit, compounded by my weakened memory and "brain fog," as the experts call it.

Our household was structured on two incomes and trying to live on one isn't working. To help cover our monthly expenses, we got a home equity line of credit - that money is gone. We also swallowed our pride and borrowed money from a family member and used it to pay expenses, too. Now, having tapped every available financial resource and pinching our pennies as hard as possible, we still need more income, so I have filed for Social Security Disability payments.

My doctor broached this topic with me about six months after the transplant but I waved it off, insisting that I would certainly be able to work again soon. The thought of being labeled "disabled" was, and still is, embarassing to me; "disabled" applies to people who can't care for themselves... and independent, proud me can certainly take care of myself. Yet no matter how much I might choke on the bite, I'm eating humble pie now and admitting that for now (and who knows how long) I can't financially provide for myself and my family.

Adding this part of the transplant experience to my blog was something I debated. Ultimately, I decided that my blog is only as helpful to others as I allow it to be. Hence, I'll describe the process and what I learn as I navigate the Social Security Administration. Lord, please grant me patience.

Photo by Sufi Nawaz

Tuesday, March 10, 2009

Liver Transplant and Hepatitis C Data: Sobering Stats

A recent email from HCV Advocate included an item that immediately caught my attention, "HCV Treatment after Liver Transplantation."

The report, recently published in Liver Transplantation, reviewed data on HCV treatment in post liver transplant patients. I gasped when I read one of the statistics noted in the report:
The 5-year survival rate is 30% for those with HCV who have had a liver transplant and have progressed to cirrhosis
Stats like this keep me awake at night. My liver transplant was just more than two years ago and already fibrosis, the precursor to cirrhosis, is present in my liver. Granted, the fibrosis score is fairly low, but Hep C is damaging my new liver.

My recent bout of elevated liver enzymes had me wringing my hands for this very reason - and that's before I saw the stat. Yikes!

The course of Interferon and Ribavirin I took in 2007 didn't clear the Hep C virus from my system. A number of new meds are in development and appear promising. Here's hoping they reach the market soon.