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.

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.

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. 

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!!!

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!

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)!

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