A Punch in the Stomach

We never received the complete results of Steve's week 8 blood test.  Apparently, the RNA level was never taken.  So when the doctor ordered the week 12 blood test, he included another request for the RNA level.  By this time, we were both anxious to see the results.  So once they were in, rather than play telephone tag with the gastro's office staff, we decided to drive over and pick up the results.

What we received was news that we weren't expecting.  So I asked my husband to jot down a few words for the blog describing how he felt about the results.  I literally thought he would just write a few words.  He wrote almost 2 pages.  So rather than hear it from me, these are Steve's own words.

A Punch in the Stomach-Round 2 of Triple Therapy

On February 15th, we got the results of my week 12 blood test.  It was a full test with the RNA level.  I was very anxious to get the results because for the past few weeks now I have been feeling worse.  I've been getting short of breath again and feeling so tired that I can hardly stand sometimes.  The nausea is also getting a lot worse, and it's very hard to concentrate.

This is actually my second time getting the week 12 test results.  The 1st time was October 13, 2009 during my first round of triple therapy.  I was pretty sick then too.  So I was also anxious to get those results.  As it turned out, the good news was...I cleared the virus.  My viral load was normal with a big 0.  My AST & ALT were also normal.  Talk about a happy day!!

The bad news was that I was extremely anemic, and since I was having chest pains and shortness of breath, my doctor took me off the treatment.  Then he ordered me start taking procrit and see a cardiologist for a stress test and echo of my heart.  No more treatment until he got the results.  By the time I had the tests, 4 to 5 weeks had gone by.   The results were good though and the doctor gave me the ok to go back on tx. 

The only thing was I had to start over from week one again.  This time the first ten weeks weren't so bad.  Then I started get the same symptoms back:  shortness of breath, chest pains, itching.  So that's why I was anxiously waiting for the 2nd round of week 12 results.  I thought I might be anemic again.  I wasn't concerned about my RNA level.  I was just assuming I was still clear. 

So when we picked up the results, I didn't open the envelope until we got into the car.  I looked at my platelets which were very low (81), and my AST was a little high, but the real kicker was my viral load was 280.  280...I know that's not high.  But it's back.  It's back!  It was like getting punched in the stomach.  I tried to hide it but it really bothered me.  I kept thinking to myself ..."What's happening?!"  I feel worse for my wife.  The next day when my wife went to work it really hit me.  It really hurt.

11 Days Off the Triple Therapy for Hepatitis C

He's been off the Hepatitis C Triple Therapy since October 14th.  I realize that it is not enough time for him to feel completely himself again, but I would think that each day he should be feeling better and better.  He's not.  He is still very itchy.  He tried Allegra, Benadryl, Claritin and Zyrtec.  They didn't work.  So our primary care physician prescribed Hydroxyzine HCL 25mg every 8 hours as needed and Triamcinolone 0.1% Cream FOU.  First couple of days it worked but it's not working any longer.  I don't think it is strong enough, and he has more rashes on him now than he did before.

In addition, he is still getting very cold.  You would think after 2 Procrit shots that would be dwindling away as well.  He is still getting very nauseous and has severe acid reflux as well.

I just hope that nothing is wrong.  When Steve saw the gastroenterologist on the 13th, his blood test results showed that he had a low RBC count, low platelet count, and a low white blood cell count.  The doctor said that Steve was anemic and he prescribed Procrit to increase Steve's RBC count.  So I asked the doctor if he was going to order Neupogen for the low white blood cell count.  His answer was that he wasn't concerned about Steve's white blood cell count.  But now I am thinking maybe he should have been. 

I believe that, when the doctor said my husband was anemic, he was referring to Aplastic Anemia.  This type of anemia has the potential to be fatal if not treated properly, so I just hope the doctor prescribed the best possible treatment. 

Steve is going for his first blood test since being off treatment tomorrow.  Once we get the results, we'll both feel better.  At the very least, we'll have a better idea of where he stands.

Disability Hearing Scheduled

We heard from Social Security. My husband’s hearing is set for December 4th. I am not hopeful. As I said before, it is my understanding that in order to qualify for disability under Hepatitis C, your symptoms have to be extreme, i.e. internal bleeding, severe encephalopathy or on the transplant list. They don’t take into account the extreme fatigue, lack of stamina, and depression resulting from hep c.

I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.

Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.

The Emotional Roller Coaster that is Hep C

Tonight was shot night- week 10.  I hope this week is better than last week.  Last week was truly rough.   Steve was feeling really awful.  Constantly dizzy and nauseous.

Early in the week he became very emotional.  He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say.  He even cried uncontrollably for hours.

By the end of the week, he was miserable and frustrated,  Everything was irritating him.  And I have to admit, it got to me.  I couldn't take it anymore, and we started arguing over the smallest things.  It was rediculous.  Luckily, we realized that the stress had gotten the best of us.  We talked it out, and this week is off to a much better start.

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.)

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.

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).