Hepatitis C Survivor  

I Have Hepatitis C... Now What?

Written By:  Teri Gottlieb

So you have this Hep C diagnosis. What's next? Panic? Nah. This virus is a pain in the rear but there is no need to panic. The first thing I want you to remember is this: More people die with this virus than from it. I'm going to say that again and I want you to read it again because it is IMPORTANT. More people die with this virus than from it.

In truth, only 20% of the people who have Hepatitis C will go on to have serious liver damage. Now, that doesn't mean you can blow this off as you very well may be in that 20%. Hepatitis C can be cured. There is treatment available. In a perfect world, everyone with Hep C would treat and be cured but in all actuality not everyone needs to treat. The people that absolutely need to treat are the ones who are showing signs of liver damage. Please discuss treatment options with your doctor.

With the diagnosis of Hep C, as well as with the diagnosis of ANY major illness, you're going to go thru the 5 stages of grief. How long you are in each stage is an individual thing. Knowing what the stages are will help you deal with the mix of emotions. Here are the 5 stages:

1. Denial.

2. Anger.

3. Bargaining.

4. Depression.

5. Acceptance.

Not everyone goes thru these stages in this order but the last stage is always the same. Acceptance.

So you've been diagnosed. You may have been called in to see your doctor, you may have been told over the phone like I was, or you might have gotten a letter in the mail. Either way, the very first thing to do is have a long talk with your doctor about your next steps. Depending on your insurance, if you have any, you may need a referral because you are going to need a specialist. Your GP isn't going to cut it for this one. Not to say he's not good at what he does, but he's not an expert. You need an expert. You need someone to head up a support team for you so you'll have a fighting chance against this virus. This person is either a Hepatologist, an Infectious Disease Specialist or a Gastroenterologist. If you live in or near a big city, finding a Hepatologist is easy. There is usually at least one at every big hospital. If you live in a more rural area, you might not have access to a Hepatologist locally but consider taking the trip to the nearest big hospital to find one. If there isn't a Hepatologist available, consider an Infectious Disease Specialist or the Gastroenterologist.

Your Specialist will discuss the option of treatment for your Hepatitis C with you. It is always best to treat the virus and clear it if possible. There may be other issues that prevent you from treatment but this is a discussion for you to have with your doctor. If your doctor is discussing treatment with you, there are some things for you to do to make sure this goes as smoothly as possible. The most important thing when you are treating Hepatitis C is to have a support system in place. Your Doctor and you will be at the top of this team. Additions to this team will include your Hep C nurse, family and friends.

Everyone has a different experience with treatment. Some go thru the process with not much more than a hiccup. For others, this treatment can be brutal. There is no way to determine in advance which path your walk with treatment will take. That support team will be very much needed if your treatment takes a rough path. The current Standard of Care for Hep C is a kind of chemotherapy, however, new drugs have been approved, and more are coming, that will make the current Standard  Care obsolete and promises to be a kinder, more gentle form of treatment. Let your family and friends know that you may need some help. Be it going to the store for or with you, helping prepare meals or just sitting and talking when you feel like it. If they know in advance that you may need help, it's easier to get their co-operation when the time comes.

For me personally, it was a rough road. I depended on my support team to help me get thru the 48 weeks that I needed to treat. My personal support team was as follows: my doctor, his amazing nurse, my husband, my son, a few good friends and a 125 pound lap dog named Sheba. You've got a team in place, now it's time to get you ready for treatment.

My viewpoint on being ready is this, expect the best but be prepared for the worst, just in case. Create your refuge. It's probably going to be your bedroom as the treatment meds can cause a lot of fatigue. Have an extra set of sheets (or two) and some extra blankets ready. Personally, I ran the gamut between not being able to get warm and sweating buckets, hence the extra sheets and blankets. Stock up on fluids. The way to make the side effects from treatment easier is to stay well hydrated. The treatment drugs are dehydrating so you'll need to add a gallon of water to what you normally take in. Water, Gatorade, Coconut water, and low acid juices are all good. Have snack foods available and foods that are easy to prepare. For me, eating was an issue. I could never tell if I was nauseous or hungry. Usually it was nausea and I hate throwing up. I mean REALLY hate it. By the time I was done with treatment, I was severely malnourished and dehydrated. Please learn from my mistakes. You NEED to eat and you definitely need to drink a lot.

Before treatment starts, your doctor will probably run a series of tests. Usually it's blood work, an ultrasound and possibly a biopsy of your liver. Don't freak out about the biopsy, I did it and it was fine. It's really not a big deal. Treatment drugs will make you very anemic so if you have a problem with anemia to start with, your doctor will probably want to make sure that is taken care of first as well.

When your doctor is ready for you to start treatment, he will write a prescription for your medications. Be aware that these medications are not typically stocked at your local pharmacy. I used a large chain pharmacy and it took them about a week to get the meds in. Some insurance companies will make you use their specialty pharmacy and they will have your drugs mailed to you on a monthly basis. If you do not have insurance, you might want to get assistance from the drug companies to secure your meds. The cost of these drugs over the course of treatment can add up to the cost of a luxury car or a small house. The drug companies all have programs in place to provide you with these drugs at no cost if you are uninsured or under-insured. Whatever the case, keep it in mind that filling these scripts is not like filling a prescription for antibiotics. Order your refills in advance so you won't be caught without your medications.

The current treatment consists of a weekly injection of Peg-Interferon and daily doses of Ribavirin. If you are a Type 1 and in the USA your doctor will probably add a Protease Inhibitor to the regimen. This third drug is taken for either 12 weeks or 24 weeks depending on which one is used. The Interferon shot can bring on what is described as "flu-like symptoms". It is usually taken on Fridays so the patient has the weekend to recover. If your days off are different, you'd take the shot on the day before your off days. The medication doses are rigid. Interferon shots are once a week on the same day each week and preferably at the same time. Ribavirin is taken every 12 hours and that Protease Inhibitor, if it is part of your treatment, is taken every 8 hours or every 12 depending on which one you are using. These meds are sensitive when it comes to schedules. Some people set alarms so they don't forget their dose. If you have a smartphone, there is a program out there called "Med-Helper" that will help you track everything.  Medication boxes are also helpful. You can pick them up at any pharmacy and you can get one that will hold a weeks' worth of pills or a months' worth. I used 2 boxes that had Monday thru Sunday compartments. One for my morning meds and one for my night meds. That worked for me.

If you are prepared for treatment, the process is less intimidating. The more you do to make it easy, the better off you will be.

Good Luck!