SCIENCE AND TECHNOLOGY

by JoAnn Siravo

I’m here today to give you a glimpse of what life has been like for me, as the spouse of a man with Hepatitis C. The idea is to show what Hepatitis C is like from the point of view of the family. But before I begin, there are a few things that I’d like all of the doctors here today to think about as I go on.

When you see your symptomatic Hepatitis C patients in your office, you are getting a very small piece of the picture. If they make it to your office, they are having a relatively good day. On bad days, they cancel and reschedule, or they don’t show up at all. It is we, the family members, who see the day-to-day ups and downs. We see how this disease has changed our loved ones over the years, and family dynamics that we engage in are the same as those for families living with cancer or AIDS.

My name is JoAnn Siravo, and I have been living with Rick Mather for 14 years. Rick is a Vietnam veteran, and was diagnosed with Hepatitis C six years ago. The virus is now said to be in remission after 8 months of Interferon and Ribavirin treatment, although he still has symptoms.

Six years ago, Rick came home from work, exhausted, saying that he felt like he had the flu. He laid down on the sofa, where he stayed for days. I had never seen him so tired, but it did make some sense because he had been working at night and going to school during the days. He was feeling emotionally good about all he was accomplishing, but he was only getting a few hours of sleep per day. We both figured it had caught up to him. But when his abdomen began to swell, we knew something more serious was going on. He dragged himself up from the sofa and to the doctor. I went with him.

The doctor told us that Rick had a type of hepatitis called Hepatitis C. It used to be called non-A, non-B, but now it had earned its own letter of the alphabet.

We knew about Hepatitis B, because Rick had contracted that virus 25 years ago. But he had not engaged in risky behavior since then. And he had now been in a monogamous relationship for 8 years. We were confused.

The doctor told us that not much was known about the virus, but that it was no more damaging than Hepatitis B, that it was chronic, and that there was no treatment for it at that time. He suggested that I be tested. And just to be on the safe side, we should start using protection during sex. And we should not share razors or toothbrushes. Toothbrushes?

I felt the heat of anxiety rise up my spine to my face.

All of a sudden, this man that I had been living with for years had become toxic to me. We had no idea how to deal with this. And the most frustrating part of all is that no one had any solid information to offer to us to help us fight. We were up against an unknown.

Rick tried to go back to work, but he soon found out that he couldn’t. He would have a few weeks of feeling good, followed by another few weeks of being sick. I used to call them flare-ups. They came on quickly and without warning, and they were emotionally devastating to both of us. We would be going on with our lives, doing things, going out together, and then suddenly the bottom would drop out and he would be in bed for weeks, in and out of a drowsy, disturbed sort of sleep.

I no longer use the term "flare-up." I don’t need it. Over the years, the bad days became longer and closer together. Today, there are no days when Rick does not feel pain and discomfort in his body.

I have tested negative for Hepatitis C, but I have made it a point to get my liver enzymes checked every couple of years or so. The last time I did, some advances had been made in terms of understanding the mechanisms of this virus. A doctor told me that it was highly improbable that I would contract the disease from Rick by having unprotected vaginal or oral sex, since we are in a long-term, monogamous relationship. But, under no circumstances should I share his toothbrush.

Toothbrushes again. I’m sure it has something to do with the fact that gums have a tendency to bleed easily, but it strikes me funny to think that sex is ok, while sharing a toothbrush is not.

I have to tell you that throughout the last six years, I’ve had a lot of trouble dealing with this situation. It’s important to understand that Hepatitis C affects spouses and families in the same way that any other symptomatic chronic illness does.

In the beginning, I was not prepared for the changes occurring in my relationship. I was not prepared to handle the flare-ups, when he would be laid up for days and we would not even have a conversation during that time. He felt bad about being so incapacitated, and I didn’t know what to say. I was not prepared to devote my life to this illness, and I could not accept the responsibilities required of me. I was angry and frustrated and I had no idea what to do about anything. And I was getting different information from different doctors and other sources, such as published articles or the Internet. Rick and I have separated twice over the last six years. Thank God we survived. Not everybody does. Three factors have helped us to remain together. One is that I had to make a decision whether I wanted to be involved in this or not. I had only two choices - either walk away for good, or devote my life to him and to his illness process. There’s no half-way. Well, I love Rick, so I decided to jump all the way into the fire with him.

Secondly, I had to seek help for myself, which I did and I am now currently undergoing treatment for my anxiety and depression. By helping myself, I am now better equipped to help Rick. When things get overwheming, instead of running away I can remain centered and face the issue at hand. Things can get very intense for families living with Hepatitis C. There are always issues; always a never-ending stream of emotional and physical discomfort to deal with. I am always on guard; always prepared for the worst. I am always conscious of the possibility of death. When Rick has a psychological crisis, I must know how to drop everything and deal with the moment and not panic. Rick and I do not have children. Thank God! I cannot imagine how much more difficult this is with children in the family.

Finally, we maintain a sense of humor and a positive attitude. We have grown stronger together because of the difficulties we share. And Rick has used his time at home wisely. When he can, he does the housework, and he explores his own creative ventures in writing.

A year and a half ago, Rick underwent Interferon with Ribavirin therapy. We were told not to get our hopes up; that it’s not always effective. But we were really happy to be able to take some kind of active step towards fighting the illness.

Rick’s chemotherapy was scheduled to last for one year. But after eight months, his viral load continued to rise and his white blood cells had dropped dangerously low. Since the medication was causing him physical and psychological discomfort and did not appear to be working, with Rick’s consent, it was stopped.

We considered the chemotherapy a failure, and tried to prepare ourselves for what might come next. Once again, we had to consider the possibility that he may die.

Rick’s follow-up appointment to his liver doctor was one that I felt I must attend with him. He was feeling progressively worse, and I had lots of questions I needed to ask - questions about what was next, about life expectancy, about what would it be like when things got really bad.

His doctor said that his liver enzymes were within the normal range, and the Hepatitis C had gone into remission. This is incredibly great news, and I’m sure the doctor was a bit disappointed when we didn’t jump for joy.

Rick and I just looked at each other. Now we’re really confused. From the point of view of the liver enzymes, he was fine. I believe we have the chemotherapy to thank for that. But he still has all the symptoms - body aches, severe fatigue, shooting pains and swelling in the area of the liver, back pain, joint pain, fevers, headaches, strange fluctuations in his metabolism, trouble maintaining a regular sleep pattern. Now we’re back to square one - the unexplained symptoms that keep getting swept under the rug of depression. We understand that depression makes pain feel worse. But we also know that years of body pain will make life feel worse. They feed each other.

So now I watch his many doctors, each one focused on a different area of the body, desperately struggle to come up with valid diagnoses in order to treat his discomfort. "Referred pain," "fibromyalgia," "chronic fatigue," - all of these are vague in themselves but at least they can be treated. Or he gets told that his discomfort is due to the depression, which I refuse to accept as a complete diagnosis.

It’s obvious - we don’t know enough about Hepatitis C. I keep hearing that the virus itself does not cause symptoms. I understand, but our questions are not being answered; my questions are not being answered. Can it be that maybe the virus is affecting other organs? Has the virus or the damage caused by it in any way affected the liver’s capacity to store sugar for energy? Is the immune system reacting to the presence of virus in his blood? Are liver enzyme tests and white blood cell counts sufficient for determining the overall condition of a Hepatitis C patient?

Interferon and Ribavirin treatment is a great place to start, and everyone with chronic Hepatitis C should have the chance to gain control over their bodies and be given the chance for remission, no matter how low the statistics. But we must have more research. This is a real disease, and it’s getting more serious. And if it gets to the point where many of these Hepatitis C patients will need a new liver, I know that there are not enough livers to go around.

Those of you with knowlege and resources, please help us fight.