The Peaks & Valleys of the Hep C Treatments

Déjà vu! As many of you know, this is the second time Steve had responded to the treatment for Hep C. The first time was combo therapy- Pegasys and Copegus. At the six month mark, his viral load was 20. So the doctor said that the virus was considered to be cleared. However, by the end of the 48 weeks, it was back. Steve’s also tried another form of treatment. He was on Infergen for 2 weeks, and I thought it was going to kill him. So did Steve, therefore the doctor took him off of it. So, when the triple therapy (Pegasys, Ribavirin & Alinia) was able to completely clear the virus (undetectable), it was a true miracle to me. Once I saw it was back, I just couldn’t believe it. Why…why does it keep coming back?

The only way I can describe the peaks and valleys of the experiences is to compare them to being knocked down by a wave. You are in the water. The sun is shining down upon you. You are feeling great. It’s a beautiful day. Unsuspectingly, you turn around. There is a huge wave coming right at you. Before you know it, you are under water trying to stand up. You can’t. You can feel the sand pulling from beneath your feet. You wonder if you are going to make it. Will you be able to maintain your breath until you can get out from under the wave? You do. As quickly as the wave came, it disappeared. You are back on your feet. You breathe a huge sigh of relief and thank God. Suddenly another wave comes and knocks you back down.

Initially, that’s the way it feels. But on that note, they say when you are knocked down by a wave you shouldn’t try to fight it. You should remain calm. Conserve your energy and let it pass.

This too shall pass.

At the End of This Journey, What Lies Ahead Is a Big Maybe

When I read my husband's notes for the blog ( A Punch in the Stomach ), I felt terrible.  I realized that his words were a direct reflection of my reaction to seeing that the virus was back.  I also realized that I didn't handle it well.

I don't know why but, when Steve was looking through the results, all I could think about was the RNA level.  I think I was looking for ( and expecting ) confirmation that the virus was still gone.  When I saw it had come back, even though the RNA level was only 280, I blurted out "It's 280."  He said, "What are you talking about?"  I said, "Your viral load is 280."  Then he looked back down at the results, then back up at me, and instantly I felt like I wanted to cry, so I turned away.  Steve knew it.  He told me that it was okay.  Everything was going to be okay.  ( How pathetic that he had to console me. )

But it doesn't end there, I was silent through most of the ride home.  Still couldn't look at him.  I felt so sad and so angry.  Not angry at Steve but at the virus- if that makes any sense.  I couldn't understand why it came back, and I started to think to myself, "What did we do differently?   Must be some reason why it's coming back."  So I thought about how stressed out we've been, and I said to Steve that it must be the stress that's stopping him from fighting the virus; and when we get home, I'm looking for a psychologist.  And that's exactly what I did, I went straight to the computer.

In hind sight, I realize that looking for reasons was my way of trying to get some control over the situation. But there is no controlling this virus.  There is no instruction booklet that we can follow to guarantee results.  And at the end of this journey, what lies ahead is a big maybe.  Maybe the virus will be gone.  Maybe he'll still have the virus.  Maybe the virus will go away and come back.  The only control I have is to accept what happens, be there for my husband and move forward.

So Babe, since I know you read the blog, I want to tell you that I am so sorry for not being there for you!  And you don't ever have to feel bad for me.  Even though having the Hep can be hard on both of us, sick or well, there is no one else that I would rather spend the rest of my life with.  I only wish you felt better, for you, not for me.

Getting the Run-around at the GI's Office

Wednesday will be week 12.  Steve had his last blood test (including his viral load) at week eight and still doesn't have the results.  Every time he calls the doctor's office he gets the run around.  No one knows where anything is and no one takes responsibility for getting things done. 

It was never like that before.  This has only been going on since his gastroenterologist's office combined with another group of doctors. Then they went fully automated- all reports, lab results, prescription orders- and that was when the problems started.  Since then, Steve has been having a problem getting his results.   For that matter, he doesn't even know if the doctor has seen them!

He's Too Quiet

Steve is having a bad day today.  I don't know what is wrong, because he won't tell me.  I came home from work, and he hardly said two words to me.  When I questioned him about being so quiet, he just said he had a lot on his mind and left it at that.  I tried to get him to talk about it but he wouldn't.

I guess I'll find out eventually.  It just worries me though.  I wonder if he will be back to himself tomorrow or if he is falling into a deeper depression. 

The Stress is Building

With the finances being the way they are, I have been a bit stressed out.  I try not to show it, because I know that Steve feels guilty about not being able to help out.  Unfortunately, the other day, I blew it.

Here's what happened.  Last week my supervisor told me that I was eligible to work overtime. The additional money could really help us out, so I was ecstatic.  The only problem was telling Steve.  In my mind, I was anticipating that he would be resistant to the idea.

You see, when Steve became ill and unable to work, I literally became the center of his universe.  (And I totally get it, if I spent 5 days a week all by myself, I am sure I would feel the same way.)  When I am not at work, we do almost everything together.  And when I am at work, he looks forward to me coming home. Other than watching the news on TV, I am his lifeline to the outside world.  I always try to be there for him. It's something that he has gotten used to and has come to expect.  So sometimes, when I do have something to do that doesn't involve him, he's resistant.  He won't tell me not to.  He'll just come up with reasons why it may not be a good idea.

Well, we were sitting around watching tv, and I figured that was as good a time as any to mention it. And I told him that I was allowed to work overtime and that I would like to do so.  Then I asked him what he thought of it.  And he told me that he didn't think it was a good idea. He said he was afraid that I would get burnt out.  And I snapped, and regrettably I said, "You don't think drowning in bills is going to burn me out!"  The minute I said it I wished I could take it back.  Steve's face fell, and we were both miserable.

We sat there for a while in silence.  I apologized.  Then we talked about it and agreed on 1/2hr a day.

Rejected by Roche Patient Assistance

As I mentioned in the blog on November 26th, even with insurance the copays are very expensive.  Right now we pay $345 for the Ribavirin and $605 for the Pegasys each month.  We applied for financial assistance with the co-pays a few weeks ago through Roche Patient Assistance Program, and we were just notified that we were denied.

To be completely honest, I found the entire process to be B.S.  The first time I called I gave the representative our gross household income and insurance information.  I asked what the eligibility requirements were and the representative couldn't tell me.  The rep did inform me that in a few days I would get a call from someone at Roche notifying me if we were qualified to receive an application.  About a week later, we received the call.  After verifying our insurance information, Roche determined that we were qualified to apply, and we would receive the application in a few days. We did.

The application was very basic.  It asked for our GROSS household income, insurance information and had a section for the doctor to fill out.  Basically, the doctor's portion asked what type of Hep, how many weeks of treatment, where to send the drugs and required the doctor's signature.  We were also required to send a copy of our tax return to verify our income and original prescriptions from the doctor.

So we filled out our portion, faxed it to the doctor to fill out his, and a few days later Steve picked up the application and the RX's at the doctors office.  Then we sent everything to Roche and less than a week later we received a notice that said that we were denied because our income was over the limit.

I think it is pretty rediculous that it took 3 weeks to find out that our income was too high, when I told them what our income is the very first time I spoke with them!  If the original rep would have known the eligibility requirements, obviously I wouldn't have applied, and we wouldn't have gotten our hopes up.  BAD SYSTEM- Gives you hope for no reason!

Father and Son

The holidays wound up well. My stepson came down and stayed with us for a few days.  When Steve first found out he was coming, he got totally stressed out.  Since I was working, Steve didn't know what he was going to do with Zach during the day- especially since Steve wasn't feeling 100%.  He knew he wasn't going to be able to run around with Zach, and Steve was afraid that Zach was going to be bored.  But he got all stress out  over nothing, Zach just wanted to hang out and spend some time with his dad. 

It was great seeing him.  He has really turned out to be a good person with a good heart.  He's 20 years old now.  Steve was diagnosed when he was 12.  I really don't know how,or if, Steve's being ill affected Zach.  He keeps things close to his chest and doesn't really talk about his emotions.  However, I do know that Steve harbors a tremendous amount of guilt.  He feels bad about all the things he never did with Zach.  All the time that they spent together when Steve just didn't have any energy.  All of the times that Steve missed (including Zach's high school graduation).

Spending time alone together gave Steve the opportunity to tell Zach about Hep C, the treatments, and how they make him feel.  He told Zach how he feels about him and how he wishes he could have been there for him.  And although Zach doesn't say much, I know that if he ever had any doubts about how Steve feels about him, he doesn't any longer.  

Home Alone

We spent the holidays, as we do most days, home alone with our 2 dogs.  I was quite content until Steve started reflecting on holidays past that were shared with family and friends.  It saddened me that his focus was on what was...rather than what is.

Sure I would love to have a close family and lots of friends, but I accept the way things are.  Over the years, since Steve became ill, it has been hard to maintain our friendships.  It makes it difficult when friends invite you to do things and you are constantly turning them down.  Although they understand Steve is sick, after a while, they stop asking.

So I can see why Steve took comfort in his memories.  But I chose to focus on what we have now...each other.

Disability Hearing and Week 5 Update

On Wednesday, Steve gave himself shot #5.  The weeks seem to be flying by since he is back on the triple therapy.  He has been doing really well this time.  Recently he has experienced some dizziness and started itching but nothing like before.  So hopefully, the addition of the Procrit will keep him from developing anemia again (and the breathlessness that went along with it).

He went to his disability hearing on the 4th.  I went with him, but I wasn't allowed in the room when he was testifying.  The lawyer wanted me to be a witness.  He informed me when we got there, so I was totally unprepared.  When I went into the room, the judge swore me in.  And quite honestly, I was so nervous that it took me a minute to distinguish my right hand from my left.  Then the lawyer asked me a bunch of questions, and I just answered to the best of my recollection.  It was hard to remember the exact timeline of everything- especially since the questions were referring to 2002.  Had I known I was going to be a witness...I would have gone through Steve's medical records again and committed the dates to memory.

One thing I can say is that I believe the judge and the vocational expert knew we weren't BSing.  At one point, while I was talking, I looked over and saw that Steve was crying.  I felt so bad.  He tried to hide it but the tears just came pouring out.  And I know the judge and vocational expert saw it as well.  After the hearing, Steve and I sat around talking about all the things we forgot to mention. But I guess the most important thing is that we were honest, so whatever happens is what is meant to be.

Safe, Healthy, & Happy Holidays to Everyone!!!

In Memory of MaryEllen

She Was Diagnosed With Hep C In The 90's. Her Doctor Convinced Her That The Side Effects Of The Treatment Were Worse Than Effects Of The Virus. She Died Of Liver Failure. Today Would Have Been Her Birthday.

Steve's Back on the Treatment!

Steve went to the cardiologist on Tuesday.  All the tests came back normal, and he was given the go ahead to go back on treatment. 

The gastroenterologist says that he wants Steve to start from square one- which means he'll be on Triple Therapy for another 48 weeks.  He'll have his first blood test in two weeks and every two weeks thereafter:  just a standard CBC.  At the 6 week point, he will have his viral load checked (which will be the first time since he's been off treatment.)

Steve's taking 1200mg of Ribavirin daily, 0.5ml of Pegasys once a week, and 1000mg of Alinia daily.  On Saturday, he is going to start taking the Procrit again (40,000 units weekly), and he will remain on the Procrit throughout the Triple Therapy.

He's already feeling the effects of the meds.  Couldn't sleep last night.  Had several charlie horses in his legs.  Today he has had a bad headache all day, and he is freezing again.  

But as I've said before, if it works, it's all worth it.  I am speaking for both my husband and myself when I say that!

Almost a Month Since He's Been Off Triple Therapy

My husband went to the cardiologist last week.  He had an echocardiogram and a stress test.  For the stress test, Steve was injected with a dye that enables the technician to see the heart in 3-D.  After the injection, his blood pressure shot up, so the tech had to give him a blood pressure pill before performing the stress test.

The results won't be in until next week.  Why it takes so long...I don't know.  But the nurse insists that because the test is 3-D, it takes about 2 weeks to get the results.  So based on that, Steve scheduled an appointment to see the cardiologist Wednesday the 18th. 

If all goes well, the gastroenterologist said he can resume treatment immediately.  So we are excited about that.  We would like to get another viral load taken to see if there is a significant change since he has been off treatment (it will be a month on the 14th), but the doctor doesn't think it is necessary.

Right now, Steve is trying to psych himself back up to get ready for the treatment.  He has the disability hearing on the fourth of December, and that is stressing him out.  Because he waited too long to file a claim, we severely doubt he is going to get approved.  Although we could really use the money, my main concern was the medical benefits, and I found out that he wouldn't be eligible for Medicare until 24 months after being approved for disability anyway.  So at least, we have health coverage from my new job.

Once again, I can't stress enough what a great source of information http://www.socialsecurity.gov/ is.  I wish we would have known about the site and all the information that is on it when Steve was first diagnosed.  We wouldn't have waited and things would probably be very different right now.  So as I said before, I hope that someone else can benefit from the lesson we have learned.

A Guide for Caring for Your Loved One with Hepatitis C

I found a guide for loved ones caring for someone with Hep C.  Thought you might find it interesting and helpful.  I did. 

The guide is on HCVAdvocate.org:  For Family and Friends Caring for Someone With Hepatitis C

The subject matter is as follows:

• Common Reactions of Caregivers 
• How to Cope
• Caregiver Stress Danger Signs
• Protect Yourself from HCV Infection
• Sexual Transmission 
• The HCV Patient During Treatment 
• Depression, Anxiety, Irritability and Mania
• Resources 

Blood Test Results Are In - The Procrit is Working!!

Steve has been feeling a lot better  The Procrit is working his RBC count (3.52), WBC count (3.8) and Hemoglobin (12) have all increased. And we've been getting along just like we did before the treatment.  No more fighting over nothing.  I am so happy.  I feel like I have my husband back.

He feels bad about how irritable he was, but we both realize that is quite common and a side effect of the treatment.  He was reading some blogs on Janis and Friends that he could really relate to.  He told me that a lot of bloggers on treatment were talking about how they were fighting with their spouses over nothing but couldn't stop themselves.

Steve is going for his stress test (and echocardiagram) on Wednesday.  If all goes well, he will be resuming the Triple Therapy with the addition of Procrit. 

It has been a long hard road for him, but he definitely wants to continue the treatment (which makes me very happy)!

Finally Stopped the Itching!!

Steve was going out of his mind from the itching.  He said he felt like something was crawling all over him.  It got so bad that he wasn't sleeping at all. He just wanted to jump out of his skin.  The medication that our primary care physician prescribed ( Hydroxyzine HCL 25mg and Triamcinolone 0.1% Cream FOU) wasn't working at all. 

So Monday I called a dermatologist, and they were nice enough to get Steve in the same day.  The dermatologist prescribed Clobetasol Propionate Foam, 0.05%.  The first night he used it my husband was able to sleep, and it has been working ever since.  He itched a little here and there the first few days but nothing like before.  He isn't itching at all anymore.  He uses the foam twice a day (in the morning and before he goes to sleep).

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