New Year, New Opportunity?

Wow! It's been nearly two months since I last posted on this blog. The chaos of the holidays have kept me busy, but now they are over and there's lots of news to share.

The biggest change for me in the past 60 days is that my doc switched my immunosuppressant from Prograf to Gengraf. The docs at my transplant center are going to try one of the new Hepatitis C treatments on a small group of transplanted patients and those patients must take Gengraf. I'm one of the people being offered the chance to try the treatment, which creates a dilemma for me. A year or two ago I probably would have jumped at this opportunity, but now that I feel better I'm very reluctant to go back to feeling unwell all the time, which is almost certain to happen on the drug regimen. And because my liver has become cirrhotic, I'm not confident it will work.

So what's the right road to take? For now I've adopted a wait-and-see approach. Because it takes just four weeks to know if the meds are effective, I want to observe what happens to some of the transplant patients who take them. If it's successful, I might give it a go. Regardless of the outcome, I'm very grateful to have this choice.

In the meantime I'm trying to determine if I can handle the Gengraf side effects. The acne (ugh! face and back!) and hair growth (face and who knows where) aren't pleasant, but they fall into the "inconvenient" category. Leg cramps, night sweats, upset stomach, etc. - these are a bigger issue.

The year is off to a good start and 2012 promises to be as much of a roller coaster as ever. Here's wishing you and yours peace, grace and health.

Photo courtesy of michaelaw

What I Wouldn't Give for a Good Night's Sleep...

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following:

Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.

Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

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

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

Read It: "Wall Street Journal" Article About Hepatitis C

I'm one of many people with Hepatitis C who can't determine how I contracted the virus. A Wall Street Journal article, "Health Danger of Parties Past," published Sept. 20, 2010, speculates that "some former party animals may be carrying a harmful reminder of their youth and not know it." The "reminder" is Hep C.

The article describes circumstances - some innocent, some less so - under which people might have been exposed to virus-tainted blood.

People who used intravenous drugs, snorted cocaine with a shared straw, or had an unsterile tattoo or body piercing could be infected with hepatitis C and not realize it. Some people may have innocently been infected if they had a blood transfusion before 1992, when the blood supply began to be screened for the virus. Others may have contracted the virus simply by sharing a toothbrush or a razor... About 20,000 people are diagnosed with hepatitis C each year, and some two-thirds of those are middle-aged, having contracted the disease 20 or 30 years ago.

Could this explain my situation? Perhaps - 30+ years ago, while in my late teens and early 20s, I was a partier, but I avoided heavy-duty drugs. I borrowed my fair share of toothbrushes and razors, however.

Anyone looking for a quick overview of Hep C and Hep C treatments will find the article useful. And to the FDA: Please get the new treatments approved ASAP. Some of us really need them.

How Will You Know if Liver Damage Becomes Severe?

When doctors told me that I needed a liver transplant, I was shocked - not just surprised, shocked. Eighteen years prior I had been diagnosed with Hepatitis C: Maybe five years before my transplant diagnosis a GI doc told me that my liver showed some cirrhosis. I still didn't give the matter enough heed. After all, I felt pretty good - a little tired sometimes, but I wasn't jaundiced (the only real symptom of liver disease I knew about) and assumed that everything was OK. For crying out loud, I'd gone to Europe with my family just two months prior to my diagnosis - does that sound like someone who needs a transplant?

Truth is, I was unaware of the symptoms of advanced cirrhosis and a couple of weeks after returning from our trip I began having problems with edema (extreme swelling in my ankles and feet) that wouldn't go away. When we couldn't get it under control, my primary care doctor put me in the hospital to run a battery of tests and that's when I got my end-stage liver disease diagnosis and the transplant discussion ensued.

Would I have done things differently then if I knew what I know now. Oh, God, yes! It's my hope that everyone with liver disease knows the symptoms of end-stage liver disease and can be a better self-advocate. In addition, it can help patients anticipate some of the conditions they may encounter so they can be better prepared than I was.

HCV Advocate, an EXCELLENT resource for anyone with Hepatitis C, published in its October newsletter a list of key symptoms that accompany decompensated cirrhosis (the liver is severely scarred and damaged). They include:

• Ascites

• Edema

• Varices

• Bleeding and bruising

• Gynecomastia

• Encephalopathy

• Infections

• Pruritis (itching)

• Jaundice

• Kidney disorders

• Liver cancer

• Menstrual irregularities

• Changes in nails

• Portal hypertension

• Nevi (spider angioma)

• Sepsis

• Malnutrition and weight loss

While this list is long, I experienced other symptoms, too - including the extreme and painful cramps in my hands, feet, calves and thighs. So this list may not be exhaustive, but it's the most inclusive one I've come across (and it offers a bit of detail about each symptom, too, which is quite helpful).

I encourage anyone with Hepatitis C to visit www.hcvadvocate.org and sign up for its regular newsletter. Some information is a bit technical but I've become a better self-advocate my learning the medical terms and reading the articles. I'm confident you'll find it useful.

(Hopefully) Big News Awaits at the AASLD Conference!

AASLD - the American Association for the Study of Liver Diseases - holds its 60th annual conference October 30 - November 3, 2009 in Boston. Yes!

I fear that I've become geekier than ever, because I'm pretty stoked about this upcoming meeting of many of the greatest liver docs and researchers on the planet. Some of the most useful information I've dug up about hepatitis C and liver transplants has come from the conference, where a great number of research projects and studies are discussed and/or results presented.

This year, for example, Vertex Pharmaceuticals will present data from studies that evaluated telepravir, which Vertex describes as a "investigational hepatitis C virus (HCV) protease inhibitor." The hepatologists at my transplant center have been following these studies and if they're interested, so am I, particularly about results from "a pooled analysis of PROVE 1 and PROVE 2 in 'difficult-to-cure' patients" - and I fall into that category. Click here to view the entire news release about the Vertex presentations planned for the AASLD Conference.

Of course, I'm a layman and novice and none of this may pertain to me and my situation. Nonetheless, it's cause for hope and I'll be optimistic for now.

Photo by Jean Scheijen, http://www.vierdrie.nl

My Self-described "Vacation" is Over - Here are the Latest Lab Results

Let's start with the good news: Most of my blood work came back looking really good. Almost everything is in range and even my blood sugar, which has been far too high for the past six weeks (in spite of oral meds and insulin) was 121. Excellent!

Then there are the liver enzymes. I've set a personal record, my friends. ALT is a whopping 690 (normal range is 0 - 40) and AST is 519 (range 0 - 40). GGT is 494 (range 0 - 60), which is the best reading I've had since last December.

I'll have labs repeated in three weeks and we'll see what that reveals. Obviously, something is awry (the doc speculates that it's part of the ongoing Hep C flare-up, yet this begs the question, How long can a flare-up last?). I'll also work on losing weight and keeping diabetes under control; hopefully, it will reduce impact of metabolic syndrome/fatty liver.

Weight and diabetes are an ongoing struggle. I asked about a magic pill to help and my transplant coordinator suggested Weight Watchers. Ugh. She's right, darn her.

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.

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.

Hepatitis C versus HIV/AIDS

I subscribe to the HCV Advocate Weekly News Review and today's email had some eye-opening information comparing Hepatitis C and HIV. I didn't know that...

* About 3.2 million people in the U.S. have chronic Hepatitis C, compared to about 1.1 million with HIV.

* HCV is harder to kill than HIV and can live longer in blood outside the body.

* Thanks to greater awareness and precautions, the overall number of new HCV infections has fallen dramatically – to about 19,000 cases annually, compared to more than 50,000 for HIV...

I sometimes wonder if Hep C will achieve the level of public awareness that HIV and AIDS have. Of course, it took many years and concentrated efforts by many advocates - celebrities, royalty, elected officials and more - to garner such broad attention for HIV/AIDS. Yet since Hep C is more widespread, it's my selfish wish that people will one day be equally passionate about finding a cure for it.

If you or a loved one has Hep C, be sure to check out the HCV Advocate website. It's a one-stop site for current news on Hep C-related news. Plus, there currently is a notice on the site's home page announcing that it has re-launched the HCV Advocate Medical Writers' Circle, stating, The authors of the MWC are some of the most highly respected hepatitis doctors and researchers from around the world... From time to time, these doctors contribute their expertise to our site. The articles they write cover various topics and are designed to help educate and support our readers.

With only a quick glance over the articles, I've already found several must-reads. Check it out.

Celebrating Because a Friend is Cured of Hep C

Late last year I received news from a close family friend that he is “… officially cured of Hepatitis C.”

What incredible, fabulous news! Chris discovered that he had Hep C nearly 13 years ago and recently underwent 18 months of treatment on Pegulated Interferon and Ribavirin treatment. His viral count has been zero (undetectable) for more than six months, which is the benchmark you must reach in order to be “cured.”

I’m thrilled for Chris and his family. His wife is one of my dearest friends and their family, including two busy teenaged children involved in sports, was stressed to the core during his grueling treatment. Like most other patients taking these drugs, Chris was severely fatigued, experienced weekly bouts of flu-like symptoms and suffered from symptoms of depression. In spite of all the challenges, he stuck with the treatment and, thank God, it paid off.

Since my transplant I’ve learned that they key to overcoming Hep C is to go undergo treatment before your liver becomes too damaged. I know first-hand how difficult treatment is; I first tried the treatment in 2000, as a single mom raising two children running my own business; I only lasted three weeks. It proved to be too debilitating (I felt sick the entire time and couldn’t work much; not working wasn’t an option), so I quit.

Just six years later, Hep C had damaged my liver beyond repair and a liver transplant was my only answer; without it, I would die. Five months after transplant, the virus had already damaged my new liver (I had stage 2 – 3 fibrosis) and a couple of months later I resumed the Interferon/Ribavirin treatment. Sadly, the drugs weren't effective; however, a biopsy last summer showed that the fibrosis had dropped to stage 1, but the improvement can't be directly attributed to treatment.

If you’re debating whether or not to try treatment for Hep C, DON’T WAIT! Get every bit of support you can and start Hep C treatment as soon as you can. This disease doesn’t just shorten your life – it diminishes your quality of life.

Take it from me: The alternative to Hep C treatment – a liver transplant – is nothing you want to have to undergo.

Need a Liver? Grow Your Own

The current issue of TIME magazine has a fascinating cover story, "Stem Cell Research: The Quest Resumes," that is a must-read for anyone suffering from chronic illness or disease. As stated in the article, "On Jan. 23, after nearly a decade of preparation, the Food and Drug Administration approved the first trial of an embryonic- stem-cell therapy for a handful of patients paralyzed by spinal-cord injuries."

Scientific gains from these trials and other ongoing stem-cell research have the potential to impact nearly every facet of medical research, including liver disease and organ transplantation. It's not implausible, researchers say, to expect that patients will be able to grow their own replacement organs, thereby negating the need for immunosuppressants. Given the negative side effects associated with these drugs (high blood pressure, high blood sugar, kidney damage, magnesium depletion, upset stomach and more), eliminating immunosuppressants will be extremely beneficial.

Beyond transplants, stem cell research could one day lead to a cure for diseases such as Hepatitis C. If a medical researcher somewhere needs a Hep C-infected, post-transplant liver patient to participate in a clinical trial involving stem cells, count me in. My children are just 15 and 16 years old and if I want to live long enough to meet my grandchildren, scientific breakthroughs must occur. I'll gladly do my part!

Liver Transplants and Depression: What the Research Shows

Depression is fairly common in the world of liver transplantation. The blues often set in before surgery: An estimated 31 to 50 percent of patients awaiting transplant experience some degree of depression. Even after transplant surgery, with a healthy liver in place, some patients begin or continue to feel depressed. One year after transplant, Hep C-infected patients (like me) experience greater depression than non-Hep C patients (they also have a lower quality of life and less physical functioning than other transplant patients).

As I looked for information about liver transplants and depression, what surprised me most was the lack of information on this topic. Granted, I only can access the research, journals and reports available online to the average layman who doesn't subscribe to medical search engines. Nevertheless, given the prevalence of depression in patients, I expected to find info more readily accessible.

If you have information on this topic, please leave a comment. Information is power... and to people (like me!) who are feeling depressed and tired, it could be a wonderful antidote.

Surviving Hepatitis C and a Liver Transplant: Learn the Lingo

Information is what every patient needs when faced with illness or injury. No matter how much time you invest educating yourself about your condition, you'll never get enough or have too much info.

Let's face it: Medical professionals not only know lots of things we don't know, they communicate using a language that's arcane and confusing. For this reason, one of the first things patients should do is become familiar with the medical jargon specific to their illness.

Over the past couple of years I've expanded my vocabulary to include liver disease terminology, which was necessary so I could follow my doctors' conversations and instructions. Here are a few new words in my vocabulary that describe symptoms and conditions of liver disease (definitions are from hepatitis-central.com):

* Ascites - Accumulation of serous fluid in the peritoneal cavity, usually encountered wtih portal hypertension or heart failure. Uncomfortable accumulation of fluid causing abdominal swelling. This occurs when the blood flow through the liver is obstructed. (I referred to the swelling in my belly as my "liver baby" because I looked very pregnant.)

* Varices (Esophageal and Gastric) - Submucosal varices of the lower esophagus or gastric fundus mucosa are frequently caused by the development of portal collateral vessels as a result of portal hypertension. Abnormally dilated/stretched veins. Dilated veins; these can rupture, leading to massive bleeding. (These are swollen veins in the esophagus that could easily rupture and cause a patient to bleed to death; I managed to avoid this complication.)

* Encephalopathy - A variety of brain function abnormalities possibly caused by circulating gut-derived brain-toxic proteins not cleared by a dysfunctional liver; symptoms can include insomnia, confusion, disorientation. (I had a touch of this and it made me forgetful and sleepy - I referred to it as "liver dementia.")

Searching for these definitions often required looking up definitions of even more terms (e.g., "portal collateral vessels" in the definition of varices, above). Ultimately I was able to boil these terms down to the point that I understood what they were and more importantly, understood what they meant in terms of my illness. My vocabulary lessons continue to this day.

Hepatitis-central.com has an extensive glossary of liver and Hepatitis C terms. If you know of other good resources that define medical words in layman's terms, please leave a comment and tell us about it. After all, you can never have too much information.

Photo credit: Thad Zajdowicz

A New Hepatitis C Treatment Could Save My Life

I have hepatitis C. It's a disease without a cure, plagues four million Americans and is the leading cause of liver transplants in the US and Europe. I have type A, which is the most common genotype in the US and most difficult to treat.

My transplant center has a highly regarded hep C research and treatment clinic, which benefits me because hep C doesn't go away after a transplant. The virus spreads throughout your body and surgery removes only the organ damaged by the virus; it doesn't eradicate hep C from your body. For transplant patients like me who have hep C, the hope is that the virus will kick-back and maintain a low profile for a few years after surgery, before starting to scar (called fibrosis, the precursor to cirrhosis) the new liver.

Sadly, my virus is literally and figuratively "Type A." (Get it? Ha ha, well, uh I guess it's really not that funny.) Fibrosis grade 2 to 3 was discovered in my liver four months after my transplant and not long after that, I began the standard treatment (pegulated interferon and ribavirin). Even more sadly, 12 weeks of shots, pills and feeling like crap later, we discovered that treatment didn't clear the virus from my system.

[On the upside, my most recent biopsy (June 2008) showed that my liver actually looked better than it did 14 months earlier with the fibrosis only at grade 1 to 2.]

Nonetheless, I know that my new liver is vulnerable and I'm concerned because my transplant center doesn't perform second transplants on patients whose livers are damaged by cirrhosis (regardless of whether cirrhosis was caused by hep C, alcoholism or another condition). The chief liver transplant surgeon told us this prior to my surgery but at the time, it didn't register. Back then I was focused the countless details involved with my first transplant and a second transplant just didn't seem to warrant consideration; now, it's top of mind.

Because of my susceptibility I try to keep informed about the promising new drugs currently in development, one of which was featured in a story posted yesterday on reuters.com. Schering-Plough released phase II data about its clinical trials for boceprevir at the annual meeting of the American Association for the Study of Liver Diseases. Results indicate that boceprevir used in combination with the standard treatment is statistically more effective in clearing the hep C virus. Additional improvement is noted if patients start standard treatment before boceprevir is introduced.

You go, Schering-Plough and Vertex Pharmaceuticals and all you other drug companies and scientists who work hard to find new treatments and/or a cure for hep C! Along with 170 million other people around the world who are infected with hep C, I give you thanks and, if I could, I'd give each of you a gigantic hug. You’re my heroes.

I'm curious to get your thoughts about clinical trials and funding for medical research and, in particular, drug development. People have such varied opinions about who pays for drug research and whether government funds should be spent on these endeavors.

Personally, I wish we could take even 10 percent of the money spent on the 2008 presidential election and put it toward something positive and useful, like medical research.