A Call for Help

Last night Steve collapsed and hit his head (the temple) on a wood table. When we got to the emergency room, his blood pressure was 158/92. The doctor did a thorough exam and ordered a CAT scan to make sure there was no trauma to his brain. There wasn't.

The doctor wasn't sure why he collapsed. Possibly the medication. Possibly his blood pressure (which is not normally). But I believe that there is a third possibility. Once again, he ignored what his body was telling him and did too much.

I realize that having hepatitis c, and feeling sick all of the time, Steve harbors a lot of guilt about the things he can't do. So he pushes himself, and I believe last night he went beyond his limits.

I have been going to school to get my Bachelor's degree, and last night was my final class. While I was at school, he went to the store and bought me a graduation present. After that, he walked the dogs. The grass was wet, and they got dirty. So he gave each of them a bath. When I got home, he gave me a big hug, told me how proud he was of me and dropped to the floor.

I don't mean to sound unsympathetic, but I am so frustrated. I don't know what to do to make him slow down. I understand that his heart is in the right place, but he needs to use his head and think of the big picture. If he keeps going the way he is, he won't be able to continue the treatment- or worse.

If anyone has any advice for me, or for my husband, that could possibly get through to him, I would appreciate your comments. Maybe it will help him to hear from others that have experienced many of the same feelings that he has.

Thank you for your support.

First Blood Test During Hepatitis C Triple Therapy

Today is the first day of week three. My husband had his first blood test yesterday: CBC and CMP. Amongst other things, the tests check for anemia, liver and kidney function.

For those of you that would like more information about the tests, I have provided links that will take you directly to the test descriptions on Quest Diagnostics' website. It is a great source of information.

Also, I would like to thank everyone for your show of concern for my mother in law. She is going to be fine. It was an ulcer. As long as she takes her medicine, she'll be as good as new!!

Sometimes Things Don't Go As Planned

I'm not really sure where to begin. Yesterday we spent most of the day in the hospital with my mother in law. Out of the blue, she started bleeding internally. Needless to say, any idea my husband had about resting and giving in to his body has gone out the window. Obviously, he is very worried about his mother, and I am worried about both of them.

Steve hardly slept last night and wasn't able to sleep during the day either. So I am concerned about how the physical and emotional stress are going to affect him. One of the first things the doctors told him was to avoid stress.

Will this have a negative effect on his treatment? He only has 12 weeks to reach the numbers that the doctors are looking for. Otherwise, the treatment stops. I can't help but worry.

Hopefully, the next time I write, I'll be writing about how great they are both doing!!

Let Your Body Be Your Guide

Steve's trying really hard to keep up with his life. But his routine, however simple it is, is stripping him of all of his energy. He has been trying to fight it, but today he realized that he has to stop pushing himself.

We were running errands this morning-- nothing strenuous. First we dropped off our dogs at the groomer. Then we went and got something to eat, because he was feeling pretty nauseous. After that, we went to the library. As soon as we walked through the door, Steve started feeling dizzy, became short of breath, and had to sit down. So I got my books quickly, and we left.

On the way home, he said to me, "I have to start listening to my body. I've been trying to fight it, and act like I'm not on treatment, but I am." When we got home, he got into bed and went to sleep.

Tonight he told me that he realized if doesn't give in to his body, the treatment is going to over power him. If he wants to stay on the treatment, and rid himself of the hep c, he has to listen and give his body what it needs.

Beginning of Week Two

Nausea was really bad last night. Kept waking him up. It's a lot worse than last time. Probably because he is taking 1400mg of Ribavirin now. Last time he took 1000mg.

He is having a hard time figuring out what to eat. Aside from the nausea, even though he has only been on the treatment for a week, nothing tastes good anymore.

Today is the first day of week two. Tonight he does his second shot, and at the end of the week he goes for his first blood test (CBC, CMP).

A Lesson Learned

Steve doesn't work. I don't see how he could do this therapy if he did.

It's not because he doesn't want to work but because he can't. He doesn't have the stamina, patience or ability to concentrate like he used to. What the disease doesn't do to your body, it saves for your mind.

Unfortunately, when he got sick we didn't understand how social security disability works. I had a good job, made good money and had great insurance. So we didn't apply. Why take money if you don't need it...right? WRONG. Because when you do need it, it won't be there.

In 2008, he applied for disability for the first time. He's been turned down twice -- mainly because he doesn't have enough work credits in the past ten years. So we had to get a lawyer. Quite frankly, the lawyer told us that he probably won't get it, because he waited so long.

So don't make the same mistake we did. Apply right away. It doens't matter what your situation is today, you never know what tomorrow will bring!

Good news. This is not a study!

Today, I am writing in response to a comment I received yesterday.

This is not a study. The treatment was approved very recently. It was very easy to get. Almost too easy. Because it is so new, the doctor told us that we would probably have to go through an approval process which could take weeks. To get the process started, he sent the prescriptions to the pharmacy. He expected them to be denied and thought the insurance company would require Steve's medical records. But to everyone's shock, a day later I went to the pharmacy for something totally unrelated and was told my husband's prescriptions were ready!

It is a combo-therapy, so Steve takes Alinia, Peginterferon (Pegasys), and Ribavirin. If all goes well, the therapy will last 48 weeks.

Alinia is produced by Romark Laboratories. There is information on their website: http://www.romark.com. There is also an article on The Doctor's Channel that has information on the prior studies: http://www.thedoctorschannel.com/video/1685.html.

I hope this helps. Thanks for the good wishes.

P.S. I am not computer savvy. Is there a way to respond directly to a comment?

Hep C Triple Therapy

Today is day four, and he is really starting to feel it now. Bad headache, body aches. Feels like he has the flu. The injection site has turned red and is tender, and he said his pee looks green. He is also getting short of breath easily (happened last time too).

I just looked up Alinia, and one of the side effects is discolored urine. So I guess it's okay. I am assuming the Alinia is what is turning his pee green, because it didn't happen last time.

He is sleeping now. This is his second nap today. I expect him to sleep a lot. He did last time too.

Starting Treatment

Steve started the treatment yesterday.

• 1400mg of Ribavirin- 3 pills in the morning and 4 at night
• 1000mg of Alinia (Nitazoxanide)- one pill in the morning and another at night.
• Injection of Pegasys (Peginterferon Alfa-2A) 0.5ml once a week

Steve sees a doctor at the University of Miami- Dr. O'Brien. He prescribed a higher dosage of Ribavirin than the norm for Steve based on his weight (218 lbs.). He said if it is too much he can always lower it.

The first day wasn't that bad. He got very nauseous in the afternoon and had to go lay down for a few hours. Last night, before he went to bed, he was very quiet but okay. I noticed he got up a lot last night though. When I spoke to him about it this morning, he said it was mainly because of all the water he drank. (It's very important to drink a lot of water.)

This morning he had the chills and felt feverish. Must be from the shot. I remember he felt the same way last time- after each shot.

He took his pills after he ate breakfast. About an hour later, he felt dizzy. He sat around for a while and felt a little better, so we went out for a little while. When we came back, he had to lie down.

A day and a half down. Only 47 weeks and 5 1/2 days to go. I'm glad he isn't feeling that bad yet, but it's really too soon to know what to expect. Once it builds up in his system, we'll know better. But the most important thing is, that it should work.

A Bit of Background Info

About 10 years ago, he started getting sick. Nothing serious. At first, it started with chronic sinus infections. Then he started having occasional stomach problems (which was diagnosed as diverticulosis). Soon after, he became consistently tired to the point of exhaustion.

He went to the doctor and was told it was stress. Then the stomach problems became worse. Each time he ate he became ill. So he went back to the doctor again, and again the doctor said it was stress. This time Steve asked the doctor for a referral to an allergist, because we thought he must have food allergies. But when he came back from the allergist, he didn't have any allergies.

At this point, I knew something was very wrong. My husband was at his wits end. He was exhausted, totally stressed out, and beginning to think he was crazy. So I told him to make an appointment with the doctor, and this time I went with him.

I am not a doctor, but it doesn't take a Phd. to figure out that there must be something wrong with his immune system. I asked the doctor to test him for Lupus. He didn't have Lupus. So we went back the next week, and I asked the doctor to test him for hepatitis. I knew that he had high liver enzymes. But the doctor insisted that the liver enzymes were elevated because Steve had high triglycerides. The doctor did not want to give him the test. After much back and forth, he finally decided to give him the test. The next week my husband got the call...