Hepatitis C treatment risk

Taking the Hepatitis C treatment risk is not easy. I had to learn to be willing to take a risk. It takes courage to try something new. After being diagnosed with hep c, I learned a lot of things that were not pleasurable to think about.  I knew these things, but had to evaluate them from a whole different level. If you just found out you have Hepatitis C, it is time to make some decisions.

First I learned that everything I put into my mouth was a potential threat. Understanding that our skin is our largest organ and my liver had to work hard in order to filter took on a new meaning. I was having immediate reactions to all the products I used on my skin. Remember, I was in a state of decompensation, so what held true for me may not be for you. However, when you think about it, do you really want all those chemicals on your skin? Your doctor will advise you. I was advised to take it to the extreme if I wanted to live. I took it a step further because I wanted to try and take the Hepatitis C treatment risk.

The treatment for HCV carries numerous health risks. Gosh, the package label alone is gruesome. In addition, the medications used to rescue low platelet and hemoglobin levels also have potential risks. The probability of having low blood labs are greater for those at end stage liver disease. During my research in the first few months I discovered statistics that were alarming to say the least.

I felt extremely limited when it came to options for my health. A volley of thoughts were pinging around in my head. The virus was killing me, yet, the treatment could cause further liver damage or even liver failure. I was born with one kidney and it could fail. I read that the Food and Drug Administration may or may not release protease inhibitors. They were so new and seemed promising, yet dangerous. I was unable to work full time and my Cobra payments were expensive.

Let me say that I have always been a risk taker. Most were calculated risks. Backing up from a situation always enabled me to become more objective.  I would look at a scenario from different angles and then either commit, or walk away. This included business, career, and family issues. This time, the odds were high. It was my life. My future existence on the planet depended on my decision. I was not afraid to die, I just felt like it was not my time yet. I had too many things left to do.

The good thing about a major crisis is that you gain skills that can be used in other areas of your life. I learned about facing death.

While walking around the block one evening, I knew it might be my last time to hear a mockingbird.  A mom was on the porch watching her kids riding skateboards on the sidewalk. They swerved around me. I looked into her eyes and had to fight tears. I was that young mom once. As I got close to the park, a husband and wife were kneeling in the flower bed. He did not look all that happy and she pointed for him to do this or that. But they were getting ready for spring. My thoughts were racing. I got back home just as my roomie came in from work. As a cancer survivor, she knew what I was going through. I knew I had to take the risk and try for triple therapy with protease inhibitors.

Here are a few things I learned while calculating whether to take the Hepatitis C treatment risk:

 1. Thinking small creates even more fear. I was passionate about my life. Was I willing to take a risk and try the new drugs? Yeah. I’m allergic to fear. I despise it. My motto has always been to do it afraid. I knew that my courage and passion had to be stronger than fear. I had to look at all of the good things that could come from treating and focus my thoughts like a laser beam. Once I embarked on this path, there was no looking back. I would not quit. I had to think BIG.

2. Potential benefits have to be weighed against potential damage. If I was going to die anyway, if the hepatitis c virus was flaming inside my liver, if my other organs were taking a beating – what was the harm in trying to extend my life? The odds were in favor of the new drugs IF my body was not resistant to them. It was a gamble for sure. Only I could decide if the benefit outweighed the threat. I educated myself regarding the gains vs. losses of HCV treatment to the point of hysteria. Then I talked myself off the ledge and told my gastroenterologist that the decision was made.

3. I would have to recruit an allied health team. I needed advice from my family, friends, and others who would be helping me. I needed assurance from my doctor regarding my body’s condition and the steps he would take to save me if my body went through a rapid decline. I ended up at a transplant center with an excellent team who understood my need to know everything I could. I also needed to know that funds would be obtainable as I navigated the murky waters of specialty pharmacies. My insurance company was on my speed dial.

 By working through these things in my mind and on paper, I was able to make a decision. Was I brave? No. Yes. No. Yes. It takes so much courage to take a risk. Yes. I would do it. I would fight to stay on treatment no matter how sick my body was. I would be compliant with all of the transplant doctor’s orders. I would be awake, alert, and vigilant. The risk was worth it. I know better than anyone that the decision is very personal. You are the only one who can make it.

I would do it again. My life expectancy was short; now it is longer. My quality of life had declined to a state of decompensated liver disease. I still have cirrhosis, but without the inflammation from Hepatitis C Virus. I literally feel years younger. The biggest change is inside. I’m grateful. I greet each sunrise like it is the first I have ever seen. It is not easy to scare me these days. When you take such a huge risk, the changes will permeate every area of your life.

Please do not take this as your truth without discussing it with your allied health team. It is my truth though, and I am shouting it from the mountain top. Your bff in the battle, Karen:)