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CLICK HERE FOR NATALIE COLE'S VIDEO INTERVIEW
A discussion with Larry King about her need for kidney transplantation after only 4 mo. of hepatitis C treatments!

 


Ronn's Story
By Ronn

It was a late winter day when I returned from the mailbox and absent-mindedly opened the envelope from the local blood bank; I assumed it was just a thank you note for my donation during their Christmas drive. I unfolded the letter and read that my blood had been rejected because they found Hepatitis C in it. I paused and my cheeks flushed; the letter suggested that I see my doctor for further testing. When I walked through the door, my wife Josie saw the angst on my face. “What’s wrong?” she asked. I handed her the letter and sat down on the sofa to think about what I had just been told.

I put off seeing the doctor for months. After all, I felt fine, my weight was down, I had piles of energy and had been described by a co-worker as being ‘healthy as a horse’; I didn’t need a doctor. But Josie’s career as a nurse prevailed and an appointment was made. My doctor ran both the EIA (enzyme immunoassay) and the RIBA (to confirm the positive EIA) blood tests and then, referred me to a specialist. In the mean time, I began to research Hepatitis C through the Internet and our public library, trying to understand the seriousness of my newfound affliction. I soon discovered that it was almost as new to the medical community as it was to me…

With my wife’s prodding, another appointment was scheduled to see a Gastroenterologist, not far from my fiftieth birthday and just two days after my wife’s unexpected death, her heart beating its last while she slept. She was only 48, she wasn’t ill and there were no signs of heart problems. It was just ‘one of those things’. It was later discovered that she had an enlarged heart valve that hadn’t been noticed before. I began to question my own mortality… now, more than ever.

Josie’s death left me devastated, confused and overwhelmed and I entered the waiting room that morning in a state of shock. While trying to anticipate what lie ahead and understand what was behind, my security had departed with my wife and I still had only a limited idea of what Hepatitis C was. I recalled a friend, from years ago, with Hepatitis A. He turned yellow, got sick, was hospitalized for a few days and returned home ‘good as new’, but mine wasn’t the same. I wasn’t yellow, I didn’t feel sick and ‘good as new’ was a cliché I didn’t think I was going to be using anytime soon.

The doctor entered the examining room with a thick folder in his hand. He was a tall, thin and soft-spoken man with compassionate eyes, wearing a Yarmulke. I think he sensed my grief and anxiety, and tempered his words; even then, the news that he gave me was probably better than I perceived it at the time. I listened to him talk with clinical precision of the complications from chronic Hepatitis C, including cirrhosis, cancer and a possibility of the eventual need for a liver transplant. He wanted a liver biopsy, where a small piece of liver is removed and examined, to determine the extent of damage.

My heart sank deep in my chest and my mind swam in a quagmire of unpleasant thoughts as he explained the battery of tests I’d be undergoing; an HCV RNA, PCR Qualitative test to determine the presence of Hepatitis C in the blood and a Quantitative test to detect the amount of virus particles, or viral load, in a specific blood sample. Then, there would be the ‘liver function test’ to measure the ALT and AST enzymes found in the liver that ‘leak’ out and into general circulation when liver cells are injured - high enzyme levels can indicate liver damage. All of these would be used to ascertain the need for treatment and to help him create an aggressive plan. He encouraged me to believe that I could live a normal, productive and long life, but I had my doubts… ‘Normal is already gone,’ I thought.

On my way home that day, the road was blurred through the tears as I considered two funerals; my dear Josie’s and, I reasoned, my own. While I pondered that, I also wondered who would take care of my two teenage sons when I died. I felt weak and helpless, but would soon discover that I was much stronger than I thought and that Hepatitis C, and the treatment of it, was going to test every ounce of that strength…

I was surprised at the fear that welled-up inside me at the idea of a biopsy, especially since, years ago; I had endured 6 months in a hospital and over a dozen surgeries. But, my children once more came to mind and I fretted over the risk of, what I envisioned at the time, as more surgery. I hid my concerns from my sons, though my sister heard the desperation in my e-mails and flew from Guam to be at my side. My brother, a respected local doctor, also came to my rescue with assurances of a ‘simple’ medical procedure. With family beside me, I soon discovered an inner-strength. Through their support I began to believe that I could survive this challenge, get on with my life and, most importantly, that my sons could get on with theirs.

The biopsy was, correctly, a simple enough procedure. After which, I felt a little silly for all of my concerns. But its results indicated that cirrhosis had caused ‘moderately severe’ damage to my liver. The cirrhosis and high levels of all the wrong things in my blood tests prompted my doctor to want to begin the yearlong medication treatment quickly, a combination of interferon, commonly used with cancer and HIV patients and ribavirin, a medicine that enhanced the effects of the Interferon. The success of the ‘Combination Therapy’ was limited (only about a 25% success rate), but it was the only treatment available.

As time passed and I began to understand Hepatitis C, my concern changed to how I was going to explain to my sons that I might not be around to see my first grandchild or even to see my youngest son graduate from college. How could I tell them that, after just losing their mother, they could possibly lose me too? I tried to present a strong and stable father figure for them, while I collapsed inside - - If it didn’t work, they were kind enough not to let on…

The first month’s supply of medications arrived by FedEx and I started the regimen, injecting the interferon into my body three times a week with a syringe that looked like a fountain pen and taking the ribavirin, in capsule form, twice a day. The side effects for me turned out to be mild, but still included hair-loss, nausea, fever, body aches and other ‘flu-like’ symptoms, blurred vision, depression and mental confusion (my sons term being ‘brain fog’). I read the warnings that cautioned of attempted suicides and of some ‘completed suicides’; I just hoped that I would be able to stay strong enough to continue to work full time and support my family while I tried to save my life.

The aches and ‘flu-like’ symptoms were controlled with other meds, blurred vision was tolerated and I adapted to the ‘brain-fog’ with a heightened level of concentration for even the easiest of tasks. The depression was controlled by anti-depressants, but the mood swings would often put me at odds with my children. On the occasions when I became unreasonable, one of them would ask, “Dad, do you really mean what you just said?” and usually I didn’t and would realize it. My teenage sons became the rational adults as we adjusted to life without their mother and with me on drugs. However, our need for each other drew us closer together and soon we were able to laugh when I ranted about the dishes not being done. Only to be reminded that it was my turn to do them.

The next year of treatment was a physical and emotional roller coaster ride, sometimes scarier than a theme park’s finest offering. Each interferon injection was followed by hours of heightened aches and pains. I learned to schedule the medications so that I slept through the worst of it, injecting myself right before bedtime. My sons adapted to my schedule and on those nights, they would quietly entertain themselves. Scheduling an injection on Friday night allowed me one of my days off work (Sunday) to feel partially normal and, then, Sunday night the pattern of sick and irritable would start all over again. My coworkers were saints and tolerated my workweek mood swings with patience and understanding, sometimes walking away rather than argue with my obviously, unreasonable notions.

I remembered how, when I lost a leg in a motorcycle accident twenty years before, I thought it was the end of the world. Yet, I stubbornly proved myself wrong and today I strap on my leg with the same thought I use to tie a shoe and laugh about the awkward situations a prosthetic leg has gotten me into. I wanted to believe that I could do the same thing with the loss of my dear Josie and my deteriorating health. My way of coping was to acknowledge the effect that events had on my life and then move on. But this time, there was more than just the sanity of a young motorcyclist at stake. This time it wasn’t just about me; I had my two sons and a Basset Hound named Twiggy to think about.

The year of medications didn’t work and although blood levels dropped while I was on the drugs, soon afterward, they rose to levels prior to treatment. Now, over a year since my last treatment and with demand for the medications rising, I am on a waiting list for the second yearlong round of therapy. This time, it will include the most recent advances in treatment, called ‘pegylated’ interferon; a form of interferon that has been molecularly changed so that it is time-released, requiring just a single injection each week. The side effects some say are worse, but some reports say the response rate is higher , so I’ll defy logic once again, and make myself sick to make myself well.

I’ve discovered a lot about myself over the past two and a half years. Knowing I may not have a long life, I strive to make it a good life. I have rediscovered the things that are important and unearthed patience and compassion that I had buried in a need for survival a long time ago. Now, my survival requires that I put my heart out in front and let it be my shield.

These days, my priorities have changed and I no longer worry about the garage getting cleaned immediately or the floor being vacuumed daily. I live each day for its self and remind my sons that I love them more often than I ever did before. The grass can grow an extra inch while we get to know each other and share our lives together beyond the parent and child, becoming best friends as we do so. And I very seldom forget which days are my days to do the dishes…

***end***

 

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Last Updated March 20, 2012