| HealthWise : Waiting for Better HCV Treatment: Living in the Gap |
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Saturday, 03 July 2010 20:44
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—Lucinda K. Porter, RN I have options. I could try a daily course of consensus interferon or a 72-week course of peginterferon and ribavirin. These seem extreme to me given the condition of my liver. Knowing that science is working on better treatments, and there are some very promising ones in the pipeline, I prefer to wait. Graceful waiting is an act of courage and patience. I cling to the fact that my liver is in excellent condition. Simultaneously, I am acutely aware that record damage from HCV is forecasted, due to the fact that the majority of those with HCV, the aging Baby Boomers, have lived with this virus for a long time. The number of those with HCV-related advanced liver disease will quadruple in the next 10 years—from 30,000 to 150,000. Those with liver cancer will triple from 5,000 to 15,000; mortality rates are rising. Waiting for the next round of HCV treatment feels like living in a gap, straddling the past and a future that I try to imagine. As someone with vast experience of living in the gap, I have picked up some tips for how to live well while waiting for science to discover better treatment for HCV: * Tip #1: Don’t be a victim—be your own hero. Waiting is an active process. While waiting for better treatment, a frustrated patient once told me, “I feel like I am sitting around and doing nothing while the hepatitis C is eating away at my liver.” Don’t sit back and let this happen. Use this time to assess your choices and design a plan for how to live well. Commit to this plan and act on it today. * Tip #2: Take care of your entire body. You may have a liver disease, but statistically you are more likely to die of an unrelated medical condition. While you are at it, take care of your mind and spirit too. * Tip # 3: Get a life. It’s easy to dwell on HCV, especially when we are first diagnosed. However, after awhile, thinking about HCV all the time can become an obsession that may hurt more than help. Strike a balance between the need to stay current and the need to be free from thinking about HCV. * Tip # 4: Imagine health. Visualization, positive self-talk, and imagination are powerful tools. We can use them to our advantage or detriment. If all we can think about is how tired and befuddled we are, it doesn’t leave room for much else. * Tip # 5: Stay connected. Find people, with or without HCV, who are vital and wise. I found it necessary to let go of unhealthy relationships, and surrounded myself with people who had gumption. Someone wrote, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” If I was going to dance in the rain, I wanted to be with other dancers. * Tip # 6: Strive for the healthiest lifestyle you can. This is courage in action. Lao Tzu said, “A man with outward courage dares to die: A man with inward courage dares to live.” Start small. I don’t smoke or use alcohol. I eat well, maintain my weight, am active, and I meditate. This took years to achieve. I gave up alcohol first, then cigarettes. Exercise came next. I am still working on meditation. It’s a process. If I tried to change all of me at once, I would have given up. * Tip # 7: Live in health, not fear. HCV is scary, and it is reasonable to freak out about it. However, fear and worry don’t help, so when you are ready, consider giving up fear. Amy Tan wrote, “If you can’t change your fate, change your attitude.” Attitude can change everything. * Tip # 8: Surround yourself with positive messages. Mary Kay Ash, founder of Mary Kay Cosmetics said, “If you think you can, you can. And if you think you can’t, you’re right.” * Tip # 9: Live in gratitude. There is a Chinese proverb that states, “We count our miseries carefully, and accept our blessings without much thought.” Are you counting your blessings or your troubles? * Tip # 10 Keep your sense of humor. The English poet, Lord Byron wrote, “Always laugh when you can. It is cheap medicine.” In addition to scientifically-proven health benefits, humor lightens even the heaviest load. It takes stamina to live in the gap, and sometimes I get sidetracked from my determination. When I feel sorry for myself, I think about Lance Armstrong. He survived testicular cancer that had metastasized to his brain and lungs, later going on to win the Tour de France seven times. Even more impressive is Lance’s return from retirement. He said, “Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight.” The reality is that new and better treatments are always going to be around the corner. I’ve seen enough change that although I appreciate the progress; I don’t get overly excited about the next great thing in the pipeline. What I want to see are hard core results. While waiting for the evidence, my priority is to stay healthy, no matter what. Living in the gap is much like being in training. It is a declaration of intent to stay healthy no matter what. It is medicine without taking drugs. When we dare to live well, we serve others by honoring ourselves. For more information on how to stay healthy while living with HCV, check out: A Guide to Healthy Living with HCV. http://www.hcvadvocate.org/news/newsLet ... 710.html#3 Add this page to your favourite Social Bookmarking websites;         
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