Today Is My Husband's Birthday

Today is my husband's birthday. He has been in bed most of the day. He got up a few times but went right back.

I was hoping we would be able to get together with some friends for a quick dinner to celebrate, but he isn't up to it.

As I am writing, I am wondering if the idea of going out with friends was more for my benefit than his. Since he started treatment, we haven't socialized at all. He is just not up to it physically or mentally. Just the idea of having to make small talk makes him anxious right now, and I totally understand that. However at times, I do feel very isolated.

Never Underestimate the Ignorance of Others

At the office I work in, we sometimes assist people with disabilities. The other day one of the supervisors was telling us the benefits of talking to people on the phone rather than in person. She recalled when she, and some of her fellow co-workers, didn't want to help a customer because he had a "social disease". She continued to say she believed he had hepatitis. She then showed us how she shoved a pen and a piece of paper at him and made sure she didn't touch him. (Like it's contagious.)

I was so upset. I wanted to say something to her, but I didn't. Because I was afraid of losing my job since I just started. When I got home, I told my husband. He couldn't believe it either. These people are supposed to be professionals. Sometimes I am so disgusted with the ignorance that is out there. I can't even begin to tell you how I felt.

Getting the Runaround with Health Insurance

Well I started my new job last week. They gave us a brochure with all the info on health benefits. The only thing it lacked was the copay amount for level four drugs-- which includes all the drugs my husband is currently taking for the Hep C Triple Therapy. So I called the insurance company, their rep told me to ask my personnel representative. The personnel rep told me to call the insurance company.

In addition, all of the drugs (Alinia, Pegasys, and the RibaPak) require preauthorization. So I am going to have to try to get my husband's doctor involved to see if he can get Steve pre-authorized before I change insurance.

I can't ( I won't ) change insurance until I know that my husband will be able to continue treatment. It's just very frustrating going through the process. You ask all the right questions, but no one has any answers nor do they care.

Week four - Viral load went from 545,900 to 21,800

We got the results back from his second blood test today. Everything looks good. No anemia. His thyroid was ok. His HCV viral load went from 545,900 (last test was taken two years ago) to 21,800.

Since he was only on treatment for four weeks when the test was taken, we are very hopeful and happy with the results! But we are trying to keep our cool. Because the first time he was on combo therapy (without the Alinia), he cleared and then relapsed.

I have to say the side effects are much worse this time than the first time he was on treatment. They are getting worse everyday. He gets very bad stomach aches everytime he eats now. He is still getting dizzy and is very short of breath. Yet he is determined to hang in there. He knows that no matter what he is going through today, it is the end result that matters the most!!

Best to you and yours,

Lisa

Hepatitis C Triple Therapy Week 5

Sometimes it is really hard watching him go through this. He's still dizzy and short of breath a lot. On top of that, and the nausea, he is now experiencing numbness in his leg.

The hep c treatment is taking its toll on him emotionally as well. He is starting to get irritable and really frustrated. I just hope he can push himself through this. I know it is really hard for him, but I keep thinking of the possible prize at the end.

Today is the first day of week 5. He had his second blood test yesterday. The doctor ordered a CBC, CMP, Thyroid test, and HCV quantitative to get a base viral load. (I would imagine most doctor's would order the baseline prior to starting treatment. But my husband's doctor didn't expect him to get the medicine as quickly as he did, and Steve wound up starting the treatment before the doctor ordered the HCV quantitative.)

Giving Back to Our Four Legged Family

This is one of our dogs: Simba. She is in bed with my husband right now. Since he started treatment, she is by his side constantly. So this small gesture is my way of giving back.




I was just reading an article about The Animal Rescue Site. They have a program called Click to Give Free Food & Care. All you have to do is go on their website daily and click. That's it.

When you click, The Animal Rescue Site displays ads from their sponsors. 100% of the money from those advertisers goes to their charity partners, and they fund programs to provide food and care for rescued animals.

Unfortunately, not enough people are clicking on a daily basis. They need more people to click. I am going to, and I hope you will too.

Week Four

The past week has been really hard on my husband, but he’s getting through it. After he collapsed and hit his head on the table (A Call for Help post), he was really dizzy for days. His doctor came to the conclusion that he probably had a concussion; although the emergency room doctor never said anything to us about it. In addition to that, because the side of his head hit the table, he can hardly open his mouth. It’s even an ordeal for him to chew.

But aside from that, he is definitely feeling better today. Believe it or not, we even laughed about the whole sequence of events since he started treatment. Week one was rough but tolerable. Week two, his mom winds up in the hospital. Week three he collapses. So far, week four is extremely uneventful, and we plan on keeping it that way!

Best to you and yours!

Lisa :-)

Will Changing Insurance Affect His Treatment

I just got a job. I start on the 17th. I am happy because I will have insurance through my employer, but I am very concerned about how this is going to affect Steve’s treatment.

We will have to get the therapy approved by the new insurance company, and I need to have that done before I cancel his current insurance. I won’t change it unless I know he will be able to continue the treatment.

Right now his insurance is very expensive. It costs $1,198 a month. CRAZY…but worth it even though I am taking everything out of my retirement account to pay for it. (At least I had a retirement account, I realize a lot of people aren’t as fortunate.)

First Doctor's Visit Since Starting Hepatitis C Triple Therapy

My husband saw the gastroenterologist. It was his first visit since he started the triple therapy for hepatitis c. The doctor went over his first blood test results with us. At this point, everything looks good. Steve is not anemic. His hemoglobin, hematocrit, and RBC count are lower than normal but nothing to be alarmed about.

Because he has been experiencing extreme nausea and fatigue, the ribavirin was decreased from 1400mg a day to 1200mg. In addition, instead of taking 6 tablets totalling 1200mg of ribavirin, the doctor wrote him a prescription for 600mg tablets. So he only has to take one pill twice a day.

The doctor also recommended, that before my husband gives himself his weekly injection, he should take ibuprofen. This should lessen the flu-like symptoms he gets after the shot, i.e. body aches, chills.

As far as my husband's blood pressure is concerned, since it is only high occasionally and started before he began treatment, the doctor does not believe it is a side effect of the therapy. Therefore, he does not want him to start taking blood pressure medication. It can have negative effects on the liver, and the less medication he takes during the triple therapy the better.

Week 3 of Hepatitis C Triple Therapy

Week 3 of the triple therapy has been really hard to him: physically and emotionally. He's been extremely nauseous, weak and dizzy. He's been getting the chills a lot as well.

I don't know if the dizziness is a result of the stress from his mother being in the hospital or if it's a side effect of the treatment. However since he fell (A Call for Help), he has hardly left the house. When we did, I drove- he realized that he couldn't.

Tomorrow we are going to see his gastroenterologist. He should have the blood test results, and hopefully we'll get some answers.