Week 26 Update-Steve's Still Hanging In There!

Wow...it's been a long time. 

Steve is still on triple therapy.  On March 13th, he had his last RNA level taken.  The result was <615 IU/mL.  He didn't get an actual count like we were used to.  Then we realized that the lab messed up and did a bDNA test instead of the usual Quantitative Real Time PCR.  With the Quantitative Real Time PCR test, you find out your actual count.  Not so for the bDNA test.  If your numbers are less than 615 IU/mL, your result says <615.  That is what the test considers clear.  So as far as the doctor was concerned, Steve is currently undetectable.

Had some problems getting the Alinia.  Humana did not want to approve more than a 20 day supply per month.  So our doctor called Humana and sent them a copy of the study that can be found on Romark's site:   "Study Showing Improved Virological Response in Chronic Hepatitis C Genotype 4 Patients Given Nitazoxanide, Peginterferon and Ribavirin."  After reading the study, Humana approved the full 30 day supply.

We also got the results of the Disability Hearing- Denied.   To paraphrase, the judge's statement said that although there is evidence that Steve is currently disabled, there was not enough documentation of Steve's depression by the doctor's prior to the date last insured.  Therefore, his illness does not meet Social Security's definition of disabled.  After seeing the records, we decided not to appeal. The doctor's truly didn't document the file properly-just mentioned the Hep- even though Steve did discuss the depression with them several times.  And since we waited such a long time to file, there was no way to document today what happened six years ago.  At least, Steve doesn't have it hanging over his head any longer.

Well, that pretty much sums up the last 3 months.  Even though he still feels pretty lousy most of the time,  Steve feels a lot better than he did without the Procrit.  As far as we are concerned, so far-so good.  Only 22 more weeks to go!!!

Week 15 Update-A Visit to the Gastroenterologist

We went to the gastroenterologist, and he had a much more positive reaction to the RNA level than we did.  He believes that the viral load is probably on its way down- not up.  The doctor said that it doesn't make sense to him that the treatment wouldn't be working now since it worked before.  So he kept Steve on the triple therapy and ordered a new blood test including viral load for week 16.

As far as Steve's hemoglobin count (10.2 at week 12), the doctor suspects Steve is probably anemic again (even though he is taking Procrit).  So he decided to lower Steve's ribavirin from 1200mg a day to 1000mg a day.  The doctor believes that the treatment will still be effective because when Steve originally started the therapy he weighed 25 more pounds than he does now.  Therefore, 1000mg is appropriate for his current weight.

On a different note, I have to give credit to the gastroenterologist.  He always takes his time with us and never minds that I come in with a dozen questions and notes from information that I have gotten off of the internet (mainly from Janis and Friends).  He appreciates the fact that I do the research and doesn't feel that I am trying to second guess him.  In addition, when I told the doctor that Steve was having a hard time getting his test results, he told me to email him if we need anything in the future, and he'll make sure that Steve gets it.

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.

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.

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.