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.

A Week and A Day Off Treatment

Steve's been off treatment for about a week now.  Since the treatment gave him anemia, the gastroenterologist prescribed Procrit.  After his first shot, he stopped experiencing short of breath.  He still becomes unbearably cold sometimes (even with the thermostat on 77), but he took his second shot today, so hopefully that will stop as well.  Still can't do much.  Just walked the dogs with me and got dizzy, but that's not happening as often either.

Good news!  Steve has been talking about going back on the treatment.  He spoke to our family doctor yesterday.  The doctor told him to make sure he waits until his red blood cell count has been back to normal for a few weeks.  The doctor doesn't want him to resume the treatment until he feels that his RBC will remain stable.  (If he goes back on treatment, he will remain on the Procrit for the duration of the tx.)

His mood is still not back to normal.  But I guess mine isn't either.  We are working on that too. 

May all be well with you and yours,

Lisa

Day 2 - Off Treatment (Temporarily?)

I can't even begin to tell you how I feel right now.  The whole idea of my husband not being on treatment is surreal.  I feel like I dreamt that we went to the doctor, and I'm waiting to wake up. 

Quite honestly, I know that right now my husband dreads the mere thought of going back on the treatment.  It took everything out of him.  I only hope that these feelings will pass.  I know he had a really hard time.  Words can't even describe how he felt.  At times, he literally thought he might be dying.  And still I can't help but feel it might be the only hope for us to have a future together.

Which is why I cried today when I saw the comment that Sheba left for me.  She understands my hope and my fear.  I read it to my husband.  I just hope her words run through his mind if he gets the option to go back on treatment.

Thank you Sheba.

Wk 12 Results Are In ... The Virus is Undetectable!

Good news.  For the first time, the virus is totally undetectable!!

Although, we have hit a small bump in the road.  The doctor is very concerned that my husband is experiencing such severe shortness of breath.  The blood test did reveal that Steve is anemic (RBC 9.4), and the anemia could be the cause. However, since Steve's father had a history of heart disease, the doctor doesn't want to take any chances.  He is ordering Procrit to increase his red blood cell count and temporarily taking Steve off the treatment.

The doctor wants Steve to see a cardiologist and have a stress test before he continues any further.  If everything goes well with the stress test, he is going to go back on the treatment but this time with the addition of the Procrit.

I didn't know how Steve was going to react, but he was actuallly relieved.  I think the doctor gave him the ok to do what he knew needed to be done.  When we were leaving the building, he sat down on a bench in the doorway and started crying (sobbing).  He then said, "At least we know it works, but I just couldn't take it anymore."

Right now he is looking forward to getting his strength back.  A few minutes ago, he was talking about how he is going to prepare himself both mentally and physically to restart the treatment.  At least now, he knows what to expect and hopefully with the addition of the procrit he'll have a better experience.

Most important is the fact that the triple therapy worked...at least up to this point.  So there is hope, not only for my husband, but for others with genotype 4 (and studies are currently being conducted on genotype 1 as well). 

The Transmission of Hepatitis C

Many people are ill-informed when it comes to the transmission of Hepatitis C. You will not get it from mere exposure to a person who has the Hep C Virus (even if the person sneezes or coughs on you). It is typically transmitted through contact with blood.

My husband contracted the disease several years before I met him. We were together 8 years before he was diagnosed, and I don’t have Hep (neither does his ex-wife).

However, that doesn’t mean that we don’t take precautions. My doctor has advised us:

• NEVER use each other’s razor, toothbrush or nail clipper
• Don’t do anything sexually that is likely to result in bleeding (For lack of a better metaphor, using the back door instead of the front).
• Don’t use each other’s comb or hair brush

 In addition, I get tested on an annual basis.

Since my husband’s blood test showed that he could be a carrier for Hep B, I received a series of shots to inoculate me against Hep B as well.

If you’d like more info on the transmission of Hep C, here are some helpful links.

Hepatitis C from a Kiss?

How common is sexual transmission of hepatitis C?

Sexual Transmission of Hep C

HCV and Sex

Modes of Transmission

Week 12, and I'm An Emotional Wreck

At the end of the week, my husband goes for the blood test that will determine if he continues treatment.  He really needs the treatment, because his last liver biopsy revealed that the liver disease has progressed to stage 3/grade 3 (the next stage is cirrhosis).

So this week I am the emotional wreck.  I've been feeling like I could cry at the drop of a hat and I have.  Watching him go through this and wondering if he is going to be able to tolerate another 36 weeks is really getting to me.  (That is if this blood test shows that the Hepatitis C viral load is undetectable.  Otherwise, it's a mute point.  The treatment will be discontinued.)

He has been pretty miserable.  Constantly freezing, to the point that his nose starts to run, even though it's 78 degrees in the house.  He's developed Pruritus, aka the Ribavirin Rash, on his legs and his entire body itches~ especially at night.  So he is having a hard time sleeping.  On top of that, everything he eats is making him sick.  (Oddly enough, the only protein he seems to be able to tolerate is ground beef.  But he can't eat that everyday!)  And he is still getting very short of breath and dizzy.  Yesterday he walked the dogs in the morning (I was at work), and on the way back it hit him.  Luckily, he didn't try to make it the rest of the way.  He went to a staircase in front of a buiding and sat there until it passed.  When I got home last night, he told me that he feels like the treatment is sucking the life out of him.

I can't help but wonder if he is right.  I feel like he could really be endangering himself, but he doesn't want me to call the doctor.  He wants to wait until his appointment, October 13th, so he can get the results of this blood test.  I'm so afraid that something is going to happen to him, but I have to respect his wishes.  If I call the doctor, and he is taken off the treatment, he will always wonder if he would have been cured.  And more importantly, this is literally a decision that will affect the rest of his life, and that is not my decision to make.