Steve Jobs Gets a Liver Transplant

Best wishes to Steve Jobs for the success of his (still rumored) liver transplant two months ago. From what I've read, his need for a transplant was uncommon and due to complications or a condition caused by pancreatic cancer.

Whenever someone of Jobs' celebrity has transplant surgery, a buzz is created that I hope makes people stop and think about transplants and the urgent need for organ donors. Akin to turning lemons into lemonade, if you will.

P.S. - I've taken a break from my blog because, well, the task of being a transplant patient with ongoing challenges (physical, financial, emotional, you name it) has been exhausting. I have rested and now I'm back in the saddle.

No Surprise - Gotta Complete More Government Forms for Social Security!

I received the mail that I'd been told to expect - it was two questionnaires for me to fill out. One asked for detail about any pain I was experiencing; the other asked for detailed responses about my condition and its impact on my daily activities. My husband was also asked to complete a questionnaire, which addressed his observations about my illness and its impact on day-to-day life, activities, etc.

More multi-paged forms requesting details. Ugh. Given how long it took me to complete the online forms, I thought surely that volume of data would be sufficient. It's frustrating and a challenge to spell out the details these days, given my (lack of) memory.

During this time, I decided to be proactive about making sure Social Security reps received the records they needed from my doctor and the hospitals I had stayed in (my transplant center and the local hospital where, in May 2006, I had my gallbladder removed and received the news about needing a liver transplant). I faxed a request to my local doctor's office, then made personal phone calls to records departments at both hospitals to ensure they had received the request and were responding. Cynic that I am, I was pleasantly surprised to learn that all had been received and records were being mailed. Yeah!

Actually, I was the last one to complete and submit forms. When I discovered that everything else had been submitted, I expedited completion of my questionnaires and faxed them in. I was told that the person/physician who reviews applications and substantiation materials would be able to make a determination within 24 hours of receiving all documents (imagine! the government making a 24-hour turnaround!), so I was highly motivated.

The documents were faxed April 24; I was again told to wait for a letter. Two days ago, unable to hover over the mailbox any longer, I called to check about how things were progressing and learned that my file had been sent to a quality control-type department where files are reviewed to be certain they are accurate. Arrrgghhhhhh! So close, so close...

I've been told to look for mail in May, so once again I wait.

Social Security Disability Benefits and Liver Transplant Patients: An Update on My Application

Holy smokes! It's been a month since my last post and there is much to tell. I'll start with my disability application - I've learned a lot.

Even before the mail arrived, I received a call one morning from a Social Security respresentative telling me that she had received my file the previous day and that because of my illness/condition (liver transplant), review of my file was being expedited. Huh? Awesome!

It's Here: The Skin Cancer My Doc Told Us About

Nearly two weeks ago I went to the dermatologist about a small spot on the side of my face that, after a month or so, wouldn't heal. It's very small but to be safe, I decided to have it checked. The nurse practitioner scraped off some cells, said she didn't think it looked threatening but sent it to the lab anyway. Ten days later I got the call: It's a squamous cell carcinoma (SCC) and while it's not malignant, the dermatologist must remove it to avoid future problems.

Although I didn't expect the diagnosis, it wasn't a shock. At our first consultation with the transplant surgeon, one of the things we learned was that transplant patients are substantially more likely to develop skin cancer, primarily because of immunosuppression. A chart from the Department of Dermatology on the University of California, San Francisco School of Medicine website shows that organ transplant recipients are 65 times more likely to develop SCC, and 100 times more likely than the general population to have non-malignant skin cancer.

Considering that I grew up in the South, around swimming pools and beaches in the days when there was nothing better than sun-kissed blonde hair and a deep brown tan (or for me, a red-hot sunburn), I expected to become good friends with a dermatologist when I got older and it became time to pay the price for my sun-worshipping ways. My transplant and immunosuppressants are like gasoline on a fire.

I've come to learn that skin cancer isn't the only form of cancer that affects all transplant recipients and liver transplant patients, in particular. A study published in the October 2008 issue of Liver Transplantation reported that liver transplant patients are more likely than the general population to have a higher incidence of all types of cancer. According to the report, "The most common cancer types in our cohort were lymphoma and skin cancer." It continued, "Based on our data, one out of six liver transplant patients is estimated to develop some form of cancer by 20 years after transplantation."

And so it goes. I'll blog about this experience, too - I've never had any skin cancer incidents before and it's all new to me. If you have advice or suggestions, please leave a comment. Apparently, there will two levels of stitches, which seems like overkill for such a tiny spot (think: zit).

Photo by Sanja Gjenero

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

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.