Friday, September 30, 2011

2011_06_02 The back-story

In 1983 I was hospitalized for several weeks with what was later determined to be Crohn's Colitis, a combination of Crohn's disease and Ulcerative colitis. Before having surgery to remove my colon, I had several blood transfusions. A few weeks later, I was diagnosed with Non A Non B Hepatitis. No treatment was given, and it was assumed that it’d run its course and then be gone. Over the years, my liver function was tested when I’d have physicals, and it was always good. In 1994, it was determined that it was indeed Hepatitis C. To my knowledge, no one ever tested for a viral load (active virus).

In June 2009, my GP included a viral load test. I got the results of all of my labs in the mail. There were notes here and there about a few things, primarily GOOD numbers with things such as cholesterol, calcium levels, Vitamin D levels, etc. Overall, it was very good news. There was a page with the results of the viral load test and it had no notes on it. It had a number on it, 792,000, which I tried to research and found nothing. I guess both fear and denial kept me from calling to find out what it meant.

For most of 2010, I had a lot of aches and pains. I wrote them off as age and/or an autoimmune issue. I finally ended up at a Rheumatologist’s office in December. He ran lots of blood work and did many x-rays. At the same time, I was seeing a Chiropractor and was getting good results from adjustments. He suggested high doses (10 caps per day) of fish oils for inflammation, which was likely the cause of my pain. I had fabulous results and have been basically pain free since. I had also been suffering with flares of uveitis, a condition of inflammation in the eyes. The fish oil has made a huge difference with that too.

When I returned to the Rheumatologist, he was very glad to know that I had good results with fish oil because there weren’t really any drugs he could safely offer me because of the Hepatitis. He began with the good news. I do not have Lupus, and I do not have Rheumatoid Arthritis (although I do have some osteo-arthritis). But the bad news was that I do have active HepC virus. My viral load in December was 700,000. So that means it was active 18 months prior, but my viral load had gone down in that time. He suggested I see a Hepatologist.

The closest, and I’m sure the best, Hepatologists are at Ochsner in New Orleans. This is where all of my surgeries had happened so long ago. Although it is a place with bad memories for me, it is also a place of comfort. I feel safe there. When I explain my history, they know what I am talking about. First I saw a PA, whom I really liked. She spoke with confidence but not arrogance. She recommended a liver biopsy so that we could actually see if my liver is damaged. The biopsy was done May 13th (I loved the doctor!). The worst of that was the 2 week wait for results.

So May 27th, my husband, son, & I went back for the results. I’m glad they were there. It always helps to have 2 or more people listening to a doctor, plus I didn’t then have to relay it to them. I have mild stage 1 damage which was declared to be very good, considering how long I’ve had this. I had already done lots of research on my own, and knew what would come next. I will be having treatments for this. Between my viral load being low and my damage being minimal, I have a good chance of clearing this (being cured). If we wait and the viral load goes up or damage gets worse, my chances for a cure go down.

Treatment will not be a picnic. It's 48 weeks of weekly Peginterferon injections and daily Ribavirin, an oral antiviral. But there is a new drug. A brand new drug, approved May 25th will now be added. It’s an oral drug that directly attacks the HCV. It has shown to almost double the success rates of treatment. This drug may also make interferon treatment only 24 weeks which would be awesome.

I have no doubt, none at all, that I will clear this. The road may be bumpy, but I will be healed.

2011_06_04 Waiting

I am in a holding pattern right now, waiting to hear what happens next. I’ve done some research, and it seems there are cost assistance programs for these drugs. I had read how expensive they are and gotten myself very upset about it. Then it occurred to me to check on assistance. That was very good news. I’m sure there will be applications and hoops to jump through, but God hasn’t gotten me right here, right now, for it to fall apart over cash.

Although in my head I have no doubt at all about being healed, my flesh wants to freak out over what happens to get me there. I can type about it all day no problem, but say it out loud? My voice cracks and I tear up every time. It hits me hard when I am alone too. That’s usually only when I am in the car. Not the best place to have breakdowns. I am concerned about this journey. I am concerned that the drugs could make my bi-polar worse. I am concerned that they could make my autoimmune conditions worse. I am concerned about having to stop the drugs because of either of those issues. And yet I am not concerned about the final outcome. I will be healed.

So why would I voluntarily put such strong drugs in my body? Me – the non vaxing mom; the woman who avoids doctors as much as possible? Well, I hesitate to use the term faith healing, because I do believe that allopathic medicine has its place in this world, but I have faith that this is the right path. If we don’t treat this now, my viral load can rise and my liver damage can worsen, both of which make successful treatment less likely. There’s no “normal” for this disease. It could stay the same forever, or it can get much worse very quickly. The worst case would be cirrhosis or liver cancer. But I have already been assured that this is the path I am to take now. God put me in the right hands at the right times to get here.

Thursday, September 29, 2011

2011_06_08 Moving forward

I just spoke with the PA again. We are moving forward. She will contact our insurance and the drug companies and facilitate the medicine delivery to me. I am assuming our insurance will leave us with a hefty co-pay, meaning phone calls to try for patient assistance. It sounds like she's willing (and accustomed to)making these calls.

For the duration of treatment plus 6 months after, we will need to use 2 forms of birth control, not hormone based. There are known birth defects with 2 of the 3 meds I'll be on. So I have an appointment to be fitted for a diaphragm. It seems silly to me, at age 44, after 23 years of marriage and no birth control to have to use birth control at all, but I will not take any warnings lightly. It seems silly, but I am getting it, and using it.

The bills are starting to come in and I'm getting nervous. It'll work out I know, but it still sucks to open the envelopes.

Wednesday, September 28, 2011

2011_06_21 Roller Coaster

What a crazy few days it's been. Thursday, I got a call, THE call which I'd been waiting for, the call about the $$ copays. I sat with notepad and pen as this nice young man, Brian, gave me numbers that sent waves of adrenaline through my body.

My copay for the newest drug, Incivek, would be $4678.36 per month. He then explained that Vertex, the company that makes Incivek, had a patient assistance program in which they offer up to $10,000. Well, that pays for a little over 2 months, and it's a 3 month round of pills. That would leave us owing about $3800 for month 3.

The interferon, Pegasys, has a $449.27 copay per month. Although a much smaller amount, still out of our reach. I am already paying out over $500 per month in medical bills. Heck, I've not quite finished paying for the kidney stone Greg had last August! But this drug also has patient assistance programs.

Needless to say, the call left me very upset. Thinking about that 3rd month on Incivek made it all impossible. I had plans for the day, and kept them so as not to sit home and worry all day. The distraction was good, but in moments of quiet, my mind wandered and the adrenaline would flow. I'd taken 2 Klonipin and they weren't touching it. But I reached a point that day of simply letting go. I said quite clearly to God that He'd have to make this happen. There was no way I could do it. We couldn't come up with that much money. If it was meant to be, God would have to make the way. If He didn't, I would take it to mean this was not meant to happen now. I decided not to share my worry with Greg. That's not something I am usually able to do, but he fell asleep that night knowing nothing about it.

Friday was my "scoot down, scoot down" appointment to be fitted for a diaphragm. That was nice and uneventful. I'd purposely made an appointment with a woman, and that was easier (I'm just not okay with a male GYN anymore). She was very sweet (and very pregnant) and said all looked good. I have a prescription now for my diaphragm.

Late Friday afternoon, I got another call from Brian. He asked if I had made my calls yet, but I had not. He said he was calling with better news. Bring it. We are about $1200 from meeting our deductible($6000). But we have an annual out-of-pocket cap of $10,000. Which means after one month of these meds we'd reach that cap and I'd have no more copays. It took a long time for that to make sense to me, but I see it now. It's not that "I" have to pay out $10,000, it's that the insurance pays 80%. How that other 20% is met is between me and the service provider. So having the drug company absorb that 20% counts toward my out-of-pocket total. So I will only need assistance for the first month.

Monday I made my phone calls. That's bit of a phobia for me. I am not comfortable on the phone. I am an email person. And the idea of calling and asking for financial help just made me ill. But I did it. The Incivek people were great. It took all of 10 minutes for me to have several numbers for the pharmacy to use to process payment. It's a done deal! The Pegasys people were equally nice, but their process is a little more detailed, as they help find non-profits who help pay the copays. I should get a call from them tomorrow. But even if they don't help, I feel certain we can come up with that one copay for the first month. Of course, I'd prefer not to, but we can rob Peter to pay Paul one month if we have to.

Anyway, the ball is no longer in my court. And I finally told Greg the whole story. We are getting closer and closer. :)

Tuesday, September 27, 2011

2011_07_05 Waiting...

Waiting can stink, can't it? I'm choosing to be still and wait. God is never late, but He's never early either. So I am not waiting anxiously, I am not nervous, I'm not even giving much thought to this right now. There's nothing further I can or need to do right now. I'm just waiting.

Monday, September 26, 2011

2011_07_21 Shipping...

Today I got a call from the pharmacy. My medicines are shipping out today, all with a $0 co-pay. I should get them Tuesday. I still have to be taught how to give myself the shots. I don't think I have to go to New Orleans for that, but I'm not sure. I seem to remember being told this can be done locally, I'm thinking through someone at the lab. I have a follow-up appointment in New Orleans August 19, so I am really hoping I do not have to wait til then to get started. It's pretty surreal to think this is really going to happen. For over 2 months it's been *maybes* and *whens*.

Sunday, September 25, 2011

2011_07_22 And we will wait a little more

So my PA called today, confirming that my meds are on their way to me. I will be waiting until I see her to begin treatment. I'm okay with that. I'd like to get myself into a few habits before beginning anyway.

One pill is taken every 12 hours and the other is every 8 hours. My parents have gotten me a new watch (if you know me, you know I never wear a watch) so I can set timers for taking them on time (important). Also, the Incevik (3xdaily - brand new pill) has to be taken with 20g of fat. I did some quick checking, and I can cover that by taking 3 fish oil caps and a big spoon of peanut butter. The fish oil is already a part of my diet, so I'll just have to take care of the peanut butter, caloricly speaking. By the time I begin to take the drugs, I can be in the habit of getting up to take the fish oil and the peanut butter.

I'm looking forward, in a way, to getting the meds and just putting them away for a while. For a few weeks, I won't really need to think about this and I can get on with getting my mind off of me. I need to focus elsewhere for a while.

Saturday, September 24, 2011

2011_08_02 Meds are here

My medicines arrived a week ago. I'll have to share a picture of all the stuff I got with it - including a red haz-mat box for my used needles. I won't be starting treatment until I see the doc August 19th. It's been nice to not have to worry about the finances or anything else for a while. We qualified for patient assistance so the meds are all free to me (Thank you Lord!). It's also pushed us past our annual out-of-pocket limit, so all doctor visits and prescriptions will be free through December. It's nice to not have to think about that anymore too.

I scratched my cornea with a branch yesterday, and it was nice to not have to worry about affording the doctor visit or the medicine.

Friday, September 23, 2011

2011_08_16 Tuesday

Friday I will go to New Orleans for my shot training and begin my meds Friday night. I'm feeling better about it today, but yesterday I was really stuck on not being able to imagine giving myself the shots. My mood yesterday went from confident to terrified over and over again. My heart knows I'm good to go. My body is still trying to freak out. I had a bout of uveitis over the weekend, but it's better now. I feel good today. :)

So, here's the stuff I received a few weeks ago:

So much to read! So much to ignore! I've been told the major and most common side effects, and I don't need to read all of the info. I don't need to add any more concern.

Basically, the interferon makes you feel like you have the flu. Your body produces interferon when you have the flu. It's not the flu virus that makes you hurt and tired, it's the interferon.

I even got a hazardous materials box for the used syringes.

The Ribavirin is taken every 12 hours. It is the drug that messes with your head. Depression is the number 1 side effect. So I have an appointment to go over all of this with my GP (he manages my meds) and hopefully he can get me in to see a psychiatrist soon.

It is also the drug with very major risks during pregnancy, including serious birth defects or death to baby. Because of this, we have to sign something saying we are using 2 forms of birth control during treatment and for 6 months after. We've been married 23 years and used no birth control for at least 20 years. At first, I felt "great, another year and a half of no pregnancy for me." Honestly, the painful yearning for another child has waned, but I would still welcome such a blessing. I've gotten a diaphragm and was a little concerned about the interruption of the moment to use it. But Hubby's said it made him feel like a kid again (of course, not meaning little kids, just back many years). That made me smile.

The thickest booklet in the whole box is about avoiding pregnancy

A large part of it is a FAQ and myth control. That was an excellent teaching opportunity with Son, and it provided us both with some real belly laughs. For instance, the myths include; a woman is not sexually active if she does not move during intercourse, and cannot become pregnant. A woman can't get pregnant standing up, or in water, or the first time, or if she doesn't have an orgasm, or if she only misses one BC pill.

The last of my meds is Incivek, a newly approved drug which targets the HepC virus specifically. This is the magic bullet as it were. It's taken every 8 hours for 12 weeks, then I'm done with it. In trials, it doubled the successful treatment rates (from an average of about 40% to near 80%). It's ridiculously expensive, but completely covered by a grant program form the drug company. I'd imagine they get tax breaks for that.

I am at a place (and trying to stay there) of being watchful for side effects, but not worrying about them, which I believe could worsen them. Today is good!

Wednesday, September 21, 2011

2011_08_20 I did it!

So we went to NOLA yesterday for "shot training." My peace had returned and I felt confident I could do it. I go to a meeting/service at church every Friday night, and it was nice to get some prayers said over me. I just love my church so much. It's full of sincere love and generosity, and made up of some really wonderful people.

So I got home about 9:30, took out a syringe to get it to room temp, then got myself set up. Syringe - check; Needle - check; alcohol prep - check; haz mat container - check; area cleaned - check; hands clean - check; reading glass to see what I'm doing - check; hubby and son to watch - check. Then I cleaned a spot on my belly with the alcohol prep and gave myself a shot. Mosquito bites hurt more. I really felt nothing from the stick. I do a slow push to let the medicine move into my system over several seconds. Then the whole set up goes into the haz mat box. I did feel the medicine within a few minutes. It gave me a somewhat metallic taste in my mouth for a few minutes, and it felt a bit metallic in my body. I never felt sick or anything like that, just odd.

Then just an hour later, I began taking the 2 oral medicines. They didn't make me feel sick either. Per doctor's suggestion, I've upped my melatonin dose and fell asleep peacefully and slept very well. My alarm went off at 7AM for another round of pills, then back to bed for a bit. So far, I am feeling well. A bit tired, but not sick.

I just feel 100% better about the shots now. I was so afraid it would be like trying to get to a splinter with a sewing needle. Not at all. It's a very tiny, very sharp needle and it went in like my flesh was butter.

Next Thursday (and every Thursday for a while) I will go for labs. If in one week my viral load doesn't go down to under 1000, that means the medicine is not working and treatment will stop (I honestly don't remember if everything will stop, or just the Incevik - the new drug). If, however, my viral load is zero at one week and again at 4 weeks, I will qualify for 24 week treatment rather than 48. That's the miracle I am praying for! (pre-treatment viral load is just over 800,000, and that is considered low)

I ask that everyone continue to pray for me regarding side effects. I am praying for none!