Hepatitis C and Cirrhosis The Race of Your Life

 Hepatitis C and Cirrhosis The Race of Your Life

Hepatitis C with Cirrhosis is a race to the finish line. I loved Will Ferrell in Talladega Nights. I have stage 4 Cirrhosis and starting treatment was a big triumph for me. The day I was diagnosed with hep c, my ascites was drained using paracentesis and I received a blood transfusion for low hemoglobin.  The news was thrown at me faster than I could absorb it. When you or a family member has been diagnosed with Hepatitis C and Cirrhosis, it is like giant 20 car pile up. Do not let the information overwhelm you. There are many options available. No matter what stage your cirrhosis is, there is hope. Gentlemen, start your engines. Hepatitis C and Cirrhosis The Race of Your Life

I personally felt like I was in a race for time. My liver was failing fast. If you are at the starting treatment, it could be compared to the green flag at a Nascar race. Do you have nerves of steel, endurance,  and a little bit of attitude?

Boogity Boogity Boogity – Having lived in Indiana, I know a little bit about the Indianapolis 500 race. I have even cheered on a demolition derby or two in my time.  There are more than a few people in my little circle of friends who started off as moonshine runners back in the day. Not bragging, just stating facts. We can look at starting Hepatitis C Treatment with Cirrhosis much like a race.

“The winner ain’t the one with the fastest car, it’s the one who refuses to lose.” – Dale Earnhardt

What shape is your car in? The first thing the doctor will do is to try and decide what stage your Cirrhosis is. Then they will begin discussing the treatment options.

Who is your sponsor?  You will need insurance, Medicare, a clinical trial, or a big pocket book. There are so many different medications to treat with. There is almost always a way for you to get in the race.

Is this your year? If your liver is in good shape, you may choose to warehouse, which is a term for waiting for the newest all oral drugs to be approved. If you have a high MELD score, have been a non-responder in the past, or relapsed, you may have to wait. If you choose to do the current triple therapy, there is great hope for you! Those who have cirrhosis actually have a very high rate of success of getting cured of the Hepatitis C Virus.

Are you prepared for the race? Read everything you can get your hands on. My website is full of information and I have links to the very best sites and forums.

Who is your pit crew? Your Allied Health Team is made up of your trusted doctor, nurses, family, and friends who can help you during the long stretch when problems come up. Choose wisely and then rely on their support. Talk to your doctor about every rattle you hear. It could be a loose bolt that will keep you from finishing the race.

What about those pit stops? While everyone going through treatment has some hardships, if you have cirrhosis, the side effects might be worse. Yes, the skin rash and hair loss are dreadful. However, if your liver is in trouble, the hair loss can seem like a minor issue in comparison. It may feel like you are jumping from a go-cart to a Nascar.

Blood counts can reveal that your liver is already not able to do its’ job. Your existing stomach problems, like nausea may get worse on treatment.  Brain fog caused by high ammonia levels may mean that you are already on Lactulose or Xifaxan. These drugs are used to try and reduce the confusion and sleepiness that go along with hepatic encephalopathy. Your platelet levels, hemoglobin, red blood cell and white blood cell count may already be low. I had to deal with all of that in order to try and get my MELD score down to be able to treat.

If you are at a higher stage of cirrhosis, you may have portal valve hypertension. This may have already led to esophageal varices or even to vomiting blood. You may have varices in other areas of your gastrointestinal tract. Your stomach and intestines can also be a place where blood backs up and bursts causing you to bleed internally. Black or tarry stools, constipation, and having bright red rectal bleeding can be traced back to portal hypertension.

Sugar Problems are frequent if your liver cannot metabolize food. If you are on insulin or a diabetic diet, you will have to be closely monitored while on treatment.

 “The crashes people remember, but drivers remember the near misses.” – Mario Andretti

Yeah. I hit the pit on the first lap. I had many of these symptoms when starting Hepatitis C treatment. I did the triple therapy when it first hit the market, and quickly became undetected. Within a month, the side effects kicked in. My hemoglobin was near 10 and my platelets dropped also. Hair loss and fatigue were troublesome, but seemed so small right then. My doctor quickly took steps to get some rescue drugs like Procrit, Nupogen, and Promacta to help straighten it out. Soon I was back in the race.

You are going to have to keep your eye on the road. I have never driven over 200 MPH with a lot of competition within inches of me. It makes me crazy just watching the race. Danika Patrick has this thing where she even hits her new boyfriend in almost every race. I always wonder if it is on purpose. Can we compare this to Riba Rage? (eyebrows raised)

Drafting is when 2 cars drive close to each other to get ahead in the race. They borrow from each other’s speed to conserve energy. It is like getting on a forum or reading my blog. Sometimes drivers trade paint when they get too close. Most good friends on forums understand that a lot of kindness is needed. Occasionally, if 2 people who have Riba Rage get into on each other’s nerves (trade paint) and they back down and get quiet for a few days. As a whole, my experience has been that keeping in contact with others (drafting) is a benefit that can not be beat on the internet forums or in a local support group.

Flat tires. I had to get a few blood transfusions. My daughter moved me in with her. But I ended up just being pushed to the pit where my crew got me going again. I looked a little worse for the wear, but I was back in the race.   

I was set to do 48 weeks with Telaprevir, Interferon, and Ribavirin, but the last esophageal varices bleed had me vomiting blood and I spent a few days in ICU. It was the finish line for me! The checkered flag was waving!

This is where the story really begins for some of us. We won the race! We got the cup! The crowd of Allied Health team members in the stands all stand to cheer and applaud. Drink a glass of milk! I have been cured of the deadly Hepatitis C Virus! If you get a Sustained Viral Response or SVR, it means that the intensity of keeping up the adrenaline rush can subside now.

Then the officials waved me on to keep going. Was this a victory lap? Well, it many ways – it was. But the truth is that with Stage 4 Cirrhosis, my race is still going. More pit stops every few months for additional varices bandings. I continue to take Nadolol for the portal hypertension. My physical limitations include eating the right food. No more 20 fat grams with each dose of Incivik. Now I eat a diet to reduce fatty liver from destroying my liver. My post treatment diet consists of low sodium to reduce the chance of ascites fluid building up. Liver loving recipes keep me alive and moving. Each day is another lap around the cirrhosis circuit. It will always be a race for life.  

“Circumstances may cause interruptions and delays, but never lose sight of your goal.” Mario Andretti

It is kind of a slap in the face at first. The let down still sobers me. I feel the victory right alongside the defeat. If you are at any stage of cirrhosis, I am waving at you each time we pass. You are in still the race too. We will keep our engines running until the last breath. It is with joy that I look over at you and know that we are in this together.  xoxo Karen:)

P.S. Watch for the cars to get better and smarter. The anti-fibrosis drug trials are being conducted now. I’m having coffee (good for your liver fibrosis reversal) with a friend tonight. She is currently in one of those fibrosis reversal trials at the NIH. We are all definitely winners!

Earnhardt and Andretti quotes from benchracing.com, Pics via  theknightshiftblogspot,  Autohowstuffworks, bukisa.com,

Hepatitis C and Cirrhosis The Race of Your Life