March 25, 2012

Hepatitis C: From Bed to Book


Lucinda K. Porter, RN

Thinking about hepatitis C as a journey may be a metaphor that is overused, but it best describes my experience of living with this disease. My journey is from bed to book, how at my lowest, a virus brought me to this amazing life.

For more than 20 years, mental illness gripped me like a straightjacket (and yes, I know all too well, what a straightjacket feels like). In 1988, unable to bear another moment, I made my final suicide attempt. I had multi-organ failure, including liver failure, and told to say my good-byes, as I would not live another 24 hours.

A miracle, the kindness of others, and a blood transfusion gave me back my life. Why it took this much drama to wake me up to life, I don’t know. What I do know is that my life began in 1988 in that hospital bed. Here is where I slowly emerged from mental illness, physical decay, and soul-sickness. Here is where I started to put back my life, cell by cell, moment by moment.

Hepatitis C virus (HCV) was part of the deal, an unintended consequence of the life-saving transfusion. This virus has been a great gift to me. It reminds me to take care of myself. It is like a mantra, whispering, “Don’t drink. Meditate. Eat well. Go to bed early. Have fun. Help others. Be grateful. Trust the process.”

I went to nursing school, later working at a needle exchange site while undergoing interferon treatment. In 1998, I started writing for the Hepatitis C Support Project ( and then landed a job as a hepatology nurse at Stanford Medical Center. I lectured across North America, continued to write and underwent peginterferon plus ribavirin treatment in 2003, but relapsed after treatment ended.

I know HCV inside and out; it is my life’s work. HCV binds me to others, and walking through treatment with patients is a deep privilege. This connection inspired me to write a book, Freedom from Hepatitis C. This guide focuses on helping patients through treatment. I wrote it because it seemed the most expedient way to pass along the knowledge I’ve compiled from my personal experience and what I learned from patients.

I know that some people can’t or don’t want to go through HCV treatment. This does not mean giving up. In fact, having HCV is an argument for doing more to take care of ourselves. Freedom from Hepatitis C suggests ways to maximize one’s health while living with this virus.

I fully intend to undergo treatment again. The “let’s get this taken care of” side of me wants to start now, but my medical team advised me to wait to see what is around the bend. Waiting is hard for me, but since I trust my advisors, I will take their advice. Waiting is a good spiritual practice for me.

The most radical change that I’ve experienced since 1988 is that I don’t let fear rule me. I still feel fear from time to time, but I deal with it. If I could give one thing to people who have HCV,

it would be this: Don’t let fear stop you from anything—from treatment, from joy, or from living a full life.

Free from Hepatitis C is my belief that just about anyone can endure hepatitis C and its treatment. If I, mentally ill, damaged, and hopeless, can go from bed to book, then so can you. You don’t have to be strong or special, you just have to be supported and informed. You don’t have to be especially brave, you just need to be honest and willing. Help is here, for anyone willing to accept it.

Breakthrough could lead to cure for chronic liver disease


By Steve Connor

Monday March 05 2012

MEDICAL scientists have taken an important step towards understanding how the diseased liver can repair itself in a breakthrough that could eventually lead to the development of new treatments for chronic liver illnesses, which at present can only be cured by organ transplants.

The researchers have worked out how to stimulate the production of vital liver cells known as hepatocytes which are lost when the liver is attacked by potentially fatal conditions such as cirrhosis or chronic hepatitis.

Liver disease is the fifth biggest killer in Britain and is the only major cause of death that has seen a continual year-on-year increase over the past 40 years – more than twice as many people die of liver disease now compared with 20 years ago.

About 16,000 people in the UK died last year of liver disease, and the number of people on the waiting list for organ transplants has increased from about 300 five years ago to nearly 500 now.

The latest research, published in the journal Nature Medicine, has unravelled the network of complex biochemical signals that trigger the regeneration of cells within the liver, the body's main organ for filtering harmful toxins from the bloodstream.

Although the human liver has remarkable powers of natural regeneration, this often results in the replacement of the wrong kind of liver cells. Instead of hepatocytes, the damaged liver tends to make to many bile duct cells, the scientists said.

The scientists were able to shift the balance towards making more hepatocytes by altering the expression of certain genes at the earliest stages of liver cell development. The discovery could lead to the development of drugs that perform the same function in patients, they said.

Luke Boulter of the Medical Research Council's Centre for Regenerative Medicine at Edinburgh University, and lead author of the study, said that understanding how new liver cells are regenerated is key to finding ways of repairing damaged liver tissue.

"This research helps us to know how to increase numbers of cells that are needed for healthy liver function and could pave the way to finding drugs that help liver repair," Dr Boulter said.

Professor Stuart Forbes, associate director of the Centre for Regenerative Medicine, said such studies are needed to tackle the increase in demand for liver transplants. "But the supply of donated organs is not keeping pace with the demand. If we can find ways to encourage the liver to heal itself then we could ease the pressure on waiting lists."

- Steve Connor


A Mother's Heartbreaking Story About Pediatric AIDS

Suzan Stirling

Ambassador, Elizabeth Glaser Pediatric AIDS Foundation

Posted: 03/23/2012 3:29 pm

My name is Suzan. I'm an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, where I advocate for people to join the fight of mothers around the world to protect their children from HIV. I'm also the author of The Silence of Mercy Bleu -- a story about a young woman who grows up harboring the secret of AIDS.

When people ask me what propelled me to write a novel about HIV/AIDS, they're often surprised to learn that I am a 26-year survivor of the disease. But unlike my character, Mercy, who grows up with the disease and later strives to have a healthy baby, I didn't learn the truth until it was almost too late.

I met and married the love of my life in 1988, and a couple of years later we decided to start a family. In 1990, our wish came true and we welcomed a beautiful baby girl into our lives. In those early years, everything was perfect.

But then in 1996, shortly after the birth of our second child, something began to go terribly wrong. In the matter of a few months, both of our children became very sick.

Alee, our then 5 year-old daughter, began to rapidly lose weight. At the same time, our newborn baby, Mitch, had to be put on a respirator in the ICU, where he would spend weeks fighting a respiratory virus his young body couldn't fend off.

The doctors were candid -- things weren't looking good. There were numerous tests and long hospital stays, but still we had no answers. It was a parent's worst nightmare. We were losing both of our children and no one could tell us why.

I'll never forget the phone call that saved my children's lives. It was a new doctor. She was quick to the point. She said, "Something in your son's blood work warrants an AIDS test. I suggest your whole family be tested."

I was in complete shock. I just remember thinking, "I'm going to have to watch my children die." I didn't think I was strong enough to handle that.

We took our HIV tests, and tragically, our doctor was dead on. I tested positive for HIV. So did Alee and Mitch. We were very lucky in that my husband was negative.

Almost overnight, my family became just another face of AIDS.

It wasn't hard to trace where I'd contracted the virus. Before I'd met my husband, I'd been engaged to a young man who I was later told had died of cancer, but who I now believe died of AIDS. I had carried the virus for nearly 10 years without ever knowing it.

My husband and I nearly lost Alee and Mitchell that year, but 1996 -- the year we were diagnosed -- was also the same year that protease inhibitors became available. My husband and I would crush the blue pills into pudding, clap and cheer, and somehow our children would manage to swallow the brown, sticky mess.

Daily, we saw improvements. This new medicine, in combination with two others, literally brought our children back to us. It was and still is the most miraculous thing that I have ever witnessed.

People often ask me how HIV has changed me, and I almost want to say, "How has it not changed me?" To be completely honest, you can't go through what I've been through -- any life-threatening illness really -- and not come out a completely changed person. HIV is even more difficult because it's a disease that many people suffer with in silence, myself included, for many years.

There were so many things that my family and I had to work through to get to where we are today. HIV forced me to be a much braver, more open person, and I'm thankful for that.

It's never easy for me to share my story, but I think it's important for me -- especially as a mother -- to do so. Today, with medicines that drive the virus to undetectable levels, there is now more hope than ever of staying healthy and stopping HIV transmission. This means being able to protect your partner from the virus, and being able to have a child born free of HIV.

My husband and I were fortunate. We didn't lose our children. The same can't be said for families in other parts of the world, like Africa where our youngest son Yonas was born.

Every day around the world, one thousand mothers -- many of them unaware that they carry HIV-transmit the virus to their own babies in utero, during labor, or through breastfeeding. Without access to the right medicines, they are helpless to protect their own health and that of their babies. Being a mother with three children who are all positive, yet remarkably healthy, I can only imagine what that feels like.

The hardest part of my having HIV was never that I might die -- the hardest part was that I had given this terrible disease to my children. No mother should have to carry that burden. Not today, not ever. Especially when mother-to-child transmission of HIV is completely preventable. With preventative services, the chances of a mother passing the virus on to her children are extremely low -- less than 2 percent. Those are some pretty terrific odds.

We can stop mothers and their children from dying. Really, we can. I know because I've seen it with my own eyes, with my own family.

It's been 16 years now since my children's health was restored. I will get to see my children grow up, and I know that for a parent, there's no greater gift.

As an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, I get the privilege of joining in the fight to eliminate pediatric AIDS. The work done by the Foundation and its partners around the world is saving children's lives and sparing families unimaginable heartache.

The Foundation has made huge strides to help mothers like me, and lifesaving medicines are now reaching more people than ever. You can be a part of that progress.

Join the fight of mothers around the world, and help us get closer to a new generation born free of HIV.