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!!!

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!!!

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.

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.

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.

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.

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!