Telaprevir
Everything about treatment is hard. Once you face that fact, you can go ahead and decide how to endure it. The list of possible side effects is seemingly endless. I left my class with the transplant team and the pharmaceutical company and journaled like mad for a few hours. I had taken copious notes and was now the proud owner of a big bag full of folders, needle holders, and bandaids. To top it all off, they threw in a big ole magnet for my fridge that had a toll free emergency hotline number. Boy was I thrilled! NOT.
Remember that old question, “How do you eat an elephant”? The answer is: One bite at a time. I never liked that question, and now I was sure that I hated it and whoever wrote it. But as I cried and railed and looked at my journal, I saw that the only way to face it was to take it one bite at a time. So I broke it down into the hard inevitable facts. Follow the doctor’s orders faithfully as if your life depended on it. It does. That includes diet, lab work, rescue drugs, and office visits.
Diet: Eat 20 grams of fat 30 minutes before each dose. There are varied ways to do this, and I stocked up on my favorite high fat items. I have a list of options in the Liver Loving Daily Menu. It’s not easy when you’re sick to your stomach anyway. You just focus on having different foods that will be ready to eat when it’s time for a dose. For example, it’s great to have a nut, candy, snack mix for when you’re on the go. High fat entrees in the freezer can be a life saver. I would choose a time when fatigue and nausea were low and fry up a pound of low sodium bacon. I kept ice cream bars and cream cheese handy. Olive oil was a quick add to a marinara sauce. Ready made protein shakes were always in the fridge for that early morning dose. Those little pecan rolls you get by the dozen? Yep. One every morning with my shake – my wash it down fat food. You’ll just have to be ready to gag it down and get it over with. I would eat and then be as still as possible to keep it down. I only “lost” it once and it had been a couple of hours after the dose, so my toll free number nurse assured me that I was ok. I’m rolling my eyes now. Yes, I ended up being grateful for the big old ice box magnet.
A word for those of us who have cirrhosis: This is the scary part for us. When the doctor says less than 2000 mg of sodium per day, and low fat diet, it’s a knock-out to try and eat the Telaprevir protease inhibitor diet. You’ve simply got to make a low sodium diet work. You’ve got a chance to be rid of the virus. No matter how hard it is, or how sick you get, don’t lose sight of the truth: Your liver is giving out and you have to protect it. You may feel overly drowsy just from the Telaprivir, and by adding high fat foods, a coma state almost settles in. That can lead to depression or anxiety, which revs your nausea up. Don’t be fooled. It can be a vicious cycle that you know is going to last for weeks. Stay as close as you can to low sodium. For some of us who have had ascites, this is life threatening. DO NOT give in to snacking on fries, chips, or any high sodium food to get your through the 12 weeks. I had days when a big slice of cheese on a bacon and mayo sandwich was all I could manage. That was NO sodium bread, low sodium mayo mixed with olive oil, swiss cheese and 2 slices of bacon. Gags me just remembering. You can do this.
The protease inhibitor relies on a HIGH FAT meal prior to taking 2 pills. Three times a day!!! You’ve got to get serious. I can honestly say that I never scrimped. I believe that, and other factors, led to my sustained viral response. (SVR)
Labs and Dr. visits: Your doctor will watch your blood levels throughout treatment. They also want to look you in the eye, and mouth, and chest, and God knows where else. I plan on a whole post about that. For now I’ll say, as your best friend, “Just do it”. They know what to watch for and can detect any abnormalities that crop up. I put off one appointment for 2 weeks and was hospitalized. Long story for later. Take my advice and get blood drawn and do no miss appointments. If you have to miss one, reschedule for the quickest date you can. I worked full time and the only appointment I put off was during a crucial week. Big Big Big mistake. I’ll come get you and take you if you need a ride. That’s what friends are for.
Side effects will come in some form. Make a list before treatment starts that details what you will need. Then be ready to buy more stuff as problems arise. Once again, I plan on a post about what you need for side effects. We’re talking skin rash uglies, fever, nausea, diarrhea from hell, fatigue, brain fog weirdness.
Endure. I saved the best tool for last. This is the golden key to the magic kingdom of surviving hepatitis c treatment. Is that the sound of trumpets? I believe so! Looking back over your shoulder at 12 weeks of triple therapy is mind boggling. You see a huge landscape of a dry and barren wilderness, a desert where the wind has already covered the footsteps you just trod. Maybe your camel is dragging you because your limp arms couldn’t even lift that sagging body into the saddle. But you made it. Imagine the joy and triumph you’ll feel as you walk into that oasis and fall into a calm pool of clear water. The dry and scaly skin feels soft again. Someone is fanning you with palm leaves and wiping the grit from your eyes. You reach down for a cool drink and lift it to your parched throat. Ahhhh.
I got caught up in that little vision. (Slightly embarrassed smile) Tossing and turning on the bed and then moving to the couch on many sleepless nights, these conscious dreams trumped my thoughts of death. Thanks for allowing me to share one of my little mental tools. I hope you have a few too. Maybe not. But I hope you will find everything that YOU need to get through it. You can visit my oasis any time.
BTW – for those of you who do not have side effects, or they are less severe, Yay for you! I hope more and more people get tested and treat before cirrhosis or severe liver damage sets in. I’ve heard it’s much easier. There is no barometer on how well you cope with the diet, side effects, and lab work. We all have different experiences. But the similarities are there also.
You can know without a doubt by listening to my “voice” on this blog, that I get what you’re going through. I came out on the other side and am reaching out to help you do the same. Others have done it for me. That’s what friends are for. Karen 🙂
