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.

RX Drugs are Expensive Even with Insurance!

We filled his prescriptions with the new insurance (Humana Select HMO) for the first time.  The Pegasys alone was $504, and the RibaPak cost $345.  That's for a one month supply.  As for the Alinia, that was only $50, but Humana only approved a 20 day supply.  So Steve is going to have to call the doctor, and the doctor's assistant will have to straighten that out (hopefully).

I have to say that the doctor and his assistant have both been great.  Anytime Steve needs anything they take care of it without any problem.  Thank goodness for them!

Tomorrow I am going to call Roche Patient Assistance Foundation to see if we qualify for help with the cost of the drugs.  In case anyone else needs help, the number is 1-877-757-6243.  In addition, there are other pharmaceutical industry-sponsored patient assistance programs.  For more information on those, the website is called Partnership for Prescription Assistance.

To those of you who celebrate it, we wish you a Happy Thanksgiving!

All the best to you and yours,

Lisa

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

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.

Thank You for Your Comments & Support

Sometimes I feel so isolated.  It's really hard watching someone you love deteriorating right before your eyes; and there is nothing that you can do, because the very thing that is eating them up inside is the only hope of a cure.  But when I get your comments, I know that I am not alone.  We are not alone.  And I thank you so much for being there!!  You are the best medicine ~  for my husband and for me.  So I just want to say thank you.

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.

Study Shows Nitazoxanide Could Have the Potential to Eliminate the Need for Ribavirin in the Treatment of Hepatitis C

Found an article on Medical News Today's website that suggests that treatment with Nitazoxanide (Alinia) and peginterferon alpha-2a could have the potential to eliminate the need for ribavirin in the future. Thought it was interesting. Hope you do as well.

Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008

Article Date: 04 Nov 2008 - 0:00 PDT

"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx

I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.

Wk 8 of Triple Therapy: Experiencing Severe Shortness of Breath

I am really worried. Went out this evening, just to walk the dog, with my husband. (It was a short walk.)

My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.

I don't know what to do...

Things to Know When Applying for Disability

For those of you that are looking for information on applying for disability, social security’s website, www.socialsecurity.gov, has a lot of useful information.

There is a section that reviews the amount of work credits you need to have in order to be eligible for disability benefits. It’s called How You Earn Credits. It explains what work credits are, how you earn them, and toward the middle of the page there is a table that tells you how many credits are necessary to be eligible for disability benefits.

In addition to that, the guidelines that social security uses to determine if someone is disabled can also be found on the site: Blue Book – September 2008.

When it comes to qualifying under Hepatitis, they ask for some severe conditions such as hemorrhaging from the esophagus or stomach; fluid around the lungs, or encephalopathy. According to the lawyer we are using, rather than trying to qualify for disability under Hepatitis, it is easier to qualify under depression (which is typically a direct effect of having hepatitis). Those symptoms can be found under Mental Disorders.

On a personal note, what I have learned from our experience is not to be brave. When you see the doctor, and s/he asks you how you are doing, don’t say fine, ok, etc. Be honest! If you feel lousy, tell the doctor I feel lousy. Otherwise, what you thought was just polite conversation will be in your records when you go to apply for disability. Usually the doctor will transcribe something that sounds like this: John Doe presented to me today in good spirits or a pleasant manner. Protect yourself. Make sure your record reflects how you really feel.

Today Is My Husband's Birthday

Today is my husband's birthday. He has been in bed most of the day. He got up a few times but went right back.

I was hoping we would be able to get together with some friends for a quick dinner to celebrate, but he isn't up to it.

As I am writing, I am wondering if the idea of going out with friends was more for my benefit than his. Since he started treatment, we haven't socialized at all. He is just not up to it physically or mentally. Just the idea of having to make small talk makes him anxious right now, and I totally understand that. However at times, I do feel very isolated.

Never Underestimate the Ignorance of Others

At the office I work in, we sometimes assist people with disabilities. The other day one of the supervisors was telling us the benefits of talking to people on the phone rather than in person. She recalled when she, and some of her fellow co-workers, didn't want to help a customer because he had a "social disease". She continued to say she believed he had hepatitis. She then showed us how she shoved a pen and a piece of paper at him and made sure she didn't touch him. (Like it's contagious.)

I was so upset. I wanted to say something to her, but I didn't. Because I was afraid of losing my job since I just started. When I got home, I told my husband. He couldn't believe it either. These people are supposed to be professionals. Sometimes I am so disgusted with the ignorance that is out there. I can't even begin to tell you how I felt.

Getting the Runaround with Health Insurance

Well I started my new job last week. They gave us a brochure with all the info on health benefits. The only thing it lacked was the copay amount for level four drugs-- which includes all the drugs my husband is currently taking for the Hep C Triple Therapy. So I called the insurance company, their rep told me to ask my personnel representative. The personnel rep told me to call the insurance company.

In addition, all of the drugs (Alinia, Pegasys, and the RibaPak) require preauthorization. So I am going to have to try to get my husband's doctor involved to see if he can get Steve pre-authorized before I change insurance.

I can't ( I won't ) change insurance until I know that my husband will be able to continue treatment. It's just very frustrating going through the process. You ask all the right questions, but no one has any answers nor do they care.

Week four - Viral load went from 545,900 to 21,800

We got the results back from his second blood test today. Everything looks good. No anemia. His thyroid was ok. His HCV viral load went from 545,900 (last test was taken two years ago) to 21,800.

Since he was only on treatment for four weeks when the test was taken, we are very hopeful and happy with the results! But we are trying to keep our cool. Because the first time he was on combo therapy (without the Alinia), he cleared and then relapsed.

I have to say the side effects are much worse this time than the first time he was on treatment. They are getting worse everyday. He gets very bad stomach aches everytime he eats now. He is still getting dizzy and is very short of breath. Yet he is determined to hang in there. He knows that no matter what he is going through today, it is the end result that matters the most!!

Best to you and yours,

Lisa

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.)

Giving Back to Our Four Legged Family

This is one of our dogs: Simba. She is in bed with my husband right now. Since he started treatment, she is by his side constantly. So this small gesture is my way of giving back.




I was just reading an article about The Animal Rescue Site. They have a program called Click to Give Free Food & Care. All you have to do is go on their website daily and click. That's it.

When you click, The Animal Rescue Site displays ads from their sponsors. 100% of the money from those advertisers goes to their charity partners, and they fund programs to provide food and care for rescued animals.

Unfortunately, not enough people are clicking on a daily basis. They need more people to click. I am going to, and I hope you will too.

Week Four

The past week has been really hard on my husband, but he’s getting through it. After he collapsed and hit his head on the table (A Call for Help post), he was really dizzy for days. His doctor came to the conclusion that he probably had a concussion; although the emergency room doctor never said anything to us about it. In addition to that, because the side of his head hit the table, he can hardly open his mouth. It’s even an ordeal for him to chew.

But aside from that, he is definitely feeling better today. Believe it or not, we even laughed about the whole sequence of events since he started treatment. Week one was rough but tolerable. Week two, his mom winds up in the hospital. Week three he collapses. So far, week four is extremely uneventful, and we plan on keeping it that way!

Best to you and yours!

Lisa :-)

Will Changing Insurance Affect His Treatment

I just got a job. I start on the 17th. I am happy because I will have insurance through my employer, but I am very concerned about how this is going to affect Steve’s treatment.

We will have to get the therapy approved by the new insurance company, and I need to have that done before I cancel his current insurance. I won’t change it unless I know he will be able to continue the treatment.

Right now his insurance is very expensive. It costs $1,198 a month. CRAZY…but worth it even though I am taking everything out of my retirement account to pay for it. (At least I had a retirement account, I realize a lot of people aren’t as fortunate.)

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.

A Call for Help

Last night Steve collapsed and hit his head (the temple) on a wood table. When we got to the emergency room, his blood pressure was 158/92. The doctor did a thorough exam and ordered a CAT scan to make sure there was no trauma to his brain. There wasn't.

The doctor wasn't sure why he collapsed. Possibly the medication. Possibly his blood pressure (which is not normally). But I believe that there is a third possibility. Once again, he ignored what his body was telling him and did too much.

I realize that having hepatitis c, and feeling sick all of the time, Steve harbors a lot of guilt about the things he can't do. So he pushes himself, and I believe last night he went beyond his limits.

I have been going to school to get my Bachelor's degree, and last night was my final class. While I was at school, he went to the store and bought me a graduation present. After that, he walked the dogs. The grass was wet, and they got dirty. So he gave each of them a bath. When I got home, he gave me a big hug, told me how proud he was of me and dropped to the floor.

I don't mean to sound unsympathetic, but I am so frustrated. I don't know what to do to make him slow down. I understand that his heart is in the right place, but he needs to use his head and think of the big picture. If he keeps going the way he is, he won't be able to continue the treatment- or worse.

If anyone has any advice for me, or for my husband, that could possibly get through to him, I would appreciate your comments. Maybe it will help him to hear from others that have experienced many of the same feelings that he has.

Thank you for your support.

First Blood Test During Hepatitis C Triple Therapy

Today is the first day of week three. My husband had his first blood test yesterday: CBC and CMP. Amongst other things, the tests check for anemia, liver and kidney function.

For those of you that would like more information about the tests, I have provided links that will take you directly to the test descriptions on Quest Diagnostics' website. It is a great source of information.

Also, I would like to thank everyone for your show of concern for my mother in law. She is going to be fine. It was an ulcer. As long as she takes her medicine, she'll be as good as new!!

Sometimes Things Don't Go As Planned

I'm not really sure where to begin. Yesterday we spent most of the day in the hospital with my mother in law. Out of the blue, she started bleeding internally. Needless to say, any idea my husband had about resting and giving in to his body has gone out the window. Obviously, he is very worried about his mother, and I am worried about both of them.

Steve hardly slept last night and wasn't able to sleep during the day either. So I am concerned about how the physical and emotional stress are going to affect him. One of the first things the doctors told him was to avoid stress.

Will this have a negative effect on his treatment? He only has 12 weeks to reach the numbers that the doctors are looking for. Otherwise, the treatment stops. I can't help but worry.

Hopefully, the next time I write, I'll be writing about how great they are both doing!!

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).

A Lesson Learned

Steve doesn't work. I don't see how he could do this therapy if he did.

It's not because he doesn't want to work but because he can't. He doesn't have the stamina, patience or ability to concentrate like he used to. What the disease doesn't do to your body, it saves for your mind.

Unfortunately, when he got sick we didn't understand how social security disability works. I had a good job, made good money and had great insurance. So we didn't apply. Why take money if you don't need it...right? WRONG. Because when you do need it, it won't be there.

In 2008, he applied for disability for the first time. He's been turned down twice -- mainly because he doesn't have enough work credits in the past ten years. So we had to get a lawyer. Quite frankly, the lawyer told us that he probably won't get it, because he waited so long.

So don't make the same mistake we did. Apply right away. It doens't matter what your situation is today, you never know what tomorrow will bring!

Good news. This is not a study!

Today, I am writing in response to a comment I received yesterday.

This is not a study. The treatment was approved very recently. It was very easy to get. Almost too easy. Because it is so new, the doctor told us that we would probably have to go through an approval process which could take weeks. To get the process started, he sent the prescriptions to the pharmacy. He expected them to be denied and thought the insurance company would require Steve's medical records. But to everyone's shock, a day later I went to the pharmacy for something totally unrelated and was told my husband's prescriptions were ready!

It is a combo-therapy, so Steve takes Alinia, Peginterferon (Pegasys), and Ribavirin. If all goes well, the therapy will last 48 weeks.

Alinia is produced by Romark Laboratories. There is information on their website: http://www.romark.com. There is also an article on The Doctor's Channel that has information on the prior studies: http://www.thedoctorschannel.com/video/1685.html.

I hope this helps. Thanks for the good wishes.

P.S. I am not computer savvy. Is there a way to respond directly to a comment?

Hep C Triple Therapy

Today is day four, and he is really starting to feel it now. Bad headache, body aches. Feels like he has the flu. The injection site has turned red and is tender, and he said his pee looks green. He is also getting short of breath easily (happened last time too).

I just looked up Alinia, and one of the side effects is discolored urine. So I guess it's okay. I am assuming the Alinia is what is turning his pee green, because it didn't happen last time.

He is sleeping now. This is his second nap today. I expect him to sleep a lot. He did last time too.

Starting Treatment

Steve started the treatment yesterday.

• 1400mg of Ribavirin- 3 pills in the morning and 4 at night
• 1000mg of Alinia (Nitazoxanide)- one pill in the morning and another at night.
• Injection of Pegasys (Peginterferon Alfa-2A) 0.5ml once a week

Steve sees a doctor at the University of Miami- Dr. O'Brien. He prescribed a higher dosage of Ribavirin than the norm for Steve based on his weight (218 lbs.). He said if it is too much he can always lower it.

The first day wasn't that bad. He got very nauseous in the afternoon and had to go lay down for a few hours. Last night, before he went to bed, he was very quiet but okay. I noticed he got up a lot last night though. When I spoke to him about it this morning, he said it was mainly because of all the water he drank. (It's very important to drink a lot of water.)

This morning he had the chills and felt feverish. Must be from the shot. I remember he felt the same way last time- after each shot.

He took his pills after he ate breakfast. About an hour later, he felt dizzy. He sat around for a while and felt a little better, so we went out for a little while. When we came back, he had to lie down.

A day and a half down. Only 47 weeks and 5 1/2 days to go. I'm glad he isn't feeling that bad yet, but it's really too soon to know what to expect. Once it builds up in his system, we'll know better. But the most important thing is, that it should work.

A Bit of Background Info

About 10 years ago, he started getting sick. Nothing serious. At first, it started with chronic sinus infections. Then he started having occasional stomach problems (which was diagnosed as diverticulosis). Soon after, he became consistently tired to the point of exhaustion.

He went to the doctor and was told it was stress. Then the stomach problems became worse. Each time he ate he became ill. So he went back to the doctor again, and again the doctor said it was stress. This time Steve asked the doctor for a referral to an allergist, because we thought he must have food allergies. But when he came back from the allergist, he didn't have any allergies.

At this point, I knew something was very wrong. My husband was at his wits end. He was exhausted, totally stressed out, and beginning to think he was crazy. So I told him to make an appointment with the doctor, and this time I went with him.

I am not a doctor, but it doesn't take a Phd. to figure out that there must be something wrong with his immune system. I asked the doctor to test him for Lupus. He didn't have Lupus. So we went back the next week, and I asked the doctor to test him for hepatitis. I knew that he had high liver enzymes. But the doctor insisted that the liver enzymes were elevated because Steve had high triglycerides. The doctor did not want to give him the test. After much back and forth, he finally decided to give him the test. The next week my husband got the call...