Great News for Hepatitis C Patients (Well, for Some of Them)

Along with other people infected with the Hepatitis C virus, I was elated when the FDA approved two new medications - telaprevir and boceprevir - both of which have proven much more effective in achieving sustained virologic response (SVR) than the current course of treatment. For people like me who have genotype 1 Hep C, the hardest to treat, the news is especially good.

Yet I just learned that treatment with one of these new medicaations may not be in my immediate future, if at all. Turns out that immunosuppressants have a negative interaction with the drugs, so liver transplant patients with Hep C can't tolerate them; at least, not for now.

Well, this just sucks. For five years we've waited for these drugs to reach the market, hoping that this would clear my Hep C and give me a chance to be realistically hopefully, and seriously consider the future, make plans, expect to be around for a good long time, enjoy some grandchildren.

But right now, the future just seems dark.

Photo by nikstyles

There's a What?! in My Ear?

Back in January I had an ear infection. It seemed silly to have this childhood illness at 51. But I've had chronic problems with my left ear since the age of two (I call it my "Achilles Ear"), so I shrugged my shoulders, saw an ENT, took the prescribed antibiotics and ear drops and assumed all was fine.

Two months later the infection was back. This time I called my primary care doctor, who phoned in an antibiotic and ear drops. Again, it cleared up.

Yet two weeks ago, the ear infection appeared for the third time. Obviously, this is a problem that needs more attention. Back to the ENT, who did a culture. Yesterday the nurse called and said the doctor wants me to use the ear drops only. Oh, and she also said that I have a staph infection.

Whoa there! Staph? That's not good. I realize staph is found on our bodies and one study I found showed that 15 percent of ear infections are caused by staph. But I'm immunosuppressed, which makes me a tad bit worried. I can't find anything online that explains what happens to people like me who have staph infections.

Tomorrow I'll talk to the ENT's nurse again, to learn what type of staph was found. Then I'll call my transplant center and, hopefully, find out what this means and what must be done to resolve the problem so it doesn't recur.

Photo by Robert S. Donovan, www.everystockphoto.com

Scanned, Poked and Prodded

It's been quite a month! April is the month when I have my annual medical check-ups. So far I've had a mammogram and my teeth cleaned, and soon I'll see the opthamologist and dermatologist. I also had a bone density scan (my first).

As I type this, I'm preparing for what's probably my least favorite scan: Colonoscopy. And by preparing, I mean that I'm gagging down pints of MoviPrep and running to the bathroom. I received helpful advice from a friend and have kept the liquid very chilled (I poured it over ice in a glass before drinking) and chugged it through a straw (so I don't taste it too much). The silver lining in this cloud, besides news of a healthy colon, should be a temporary (at least) loss of weight.

After this thorough medical survey, I wonder: Why do mammograms have to be so uncomfortable? And why must prepping for a colonoscopy have to involve such a vile tasting liquid? When you consider the advances in science and medicine, these unpleasant experiences seem unnecessary.

Oh, well. Gotta run (pun intended).

Photo by Jyn Meyer

Small Signs of Progress

In a sure indication that I'm recovering from the rejection episode I had last August, this week I discontinued two of my medications and decreased the dosage of another. Cartwheels!

I don't have words to express how tired I am of taking meds. One of my prescriptions requires me to take four capsules twice a day; another is three tablets twice daily. Then there are the rest of the prescribed meds and vitamins and the whole diabetes/insulin routine. The yearly cost, even on our prescription plan, is close to $2,000.

Don't get me wrong: I realize the meds are important. And I'm taking far fewer pills than I did immediately after my liver transplant (64 pills each day back then). Managing them, however, is tough because I work with three pharmacies, and at times the meds and/or dosages change weekly.

To me, fewer pills means progress, and progress makes me feel hopeful. Hooray!

Photo by Marek Bernat

Lab Results Hold Steady - My Hepatitis C "Break" Continues

Yee haw! My lab results were decent - very comparable to my last set of labs in February - so I don't have to have blood drawn again for a month. That's FOUR WHOLE WEEKS!

Last year I'd guess that, on average, I had blood drawn every week-and-a-half. That's a lot of pokes with needles, including my record-setting lab visit at which nine tubes of blood were drawn.

I'm delighted and grateful for the continued break. My goal is to live in the moment and simply "be."

HUGE News for People with Hepatitis C

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment

This news is incredible, jaw-dropping and fabulous! A new Hepatitis C treatment is 100 percent effective. A weekend post in the HBV and HCV Advocate Hepatitis Blog described the research findings from a presentation at the 2011 European Association for the Study of the Liver conference:

In the quadruple therapy study, HCV patients were given four drugs in combination; pegylated Interferon-alpha (PegIFN-alpha); ribavirin (RBV); and two different direct-acting antivirals (DAAs) BMS-650032 (an HCV NS3 protease inhibitor) and BMS-790052 (an HCV NS5A replication complex inhibitor)...

Professor Heiner Wedemeyer, EASL'S Secretary General, said: "Quadruple therapy is possibly the future of HCV treatment; this study goes a way to confirming that. While it's expected that the first DAAs and triple therapy will be approved for use later this year, quadruple therapy appears to have a more profound effect on virological response, with less of a resistance problem."

The study may also provide new hope for a growing number of HCV patients who cannot be effectively treated for chronic hepatitis with current treatments.

The blog post didn't indicate when the four-med therapy will be available, but I'm hoping it's very soon. And this is news that I'll be following with great interest.

Photo by Jayanta Behera

Taking a Break from Chronic Illness

Hepatitis C is a chronic illness that, like so many other diseases and conditions, requires a great deal of time and attention: Doctors visits, lab work, medication regimens, medical procedures, research and more. I refer to it as my full-time job, which isn't far from the truth. Factor in the time required to review and resolve billing and insurance issues, and it's been a job-and-a-half.

Given the time, effort and stress related to my "job," it's important to take a break from time to time. And for the past six weeks, since I met with my heptologist, I've done just that. No labs, no conversations with my transplant team, no med changes.

Ahhhh.

Tomorrow all of that changes when I go to the lab and the vampires have their way with me and my poor worn-out veins. Then I'll nervously await a call from my transplant center with the results and we'll debate whether I need another liver biopsy now or if the condition of my liver seems stable enough to wait it out until one of the new Hep C meds is available this summer. A lot is riding on the outcome of these labs - yep, my break most definitely ends tomorrow.

Photo by Sinan Acar