To recap, in the spring of 2003, Tim was diagnosed with hepatitis C, a virus that experts call the silent killer, because most people who have it dont know they have it. At this writing, about 5 million people in the U.S. have been diagnosed with hepatitis C, which slowly attacks the liver over many years and without treatment, can lead to liver failure and death.
Although doctors believe Tim, 52, has had the virus for perhaps 40 years, it wasnt until last year that he started developing symptoms. He became extremely fatigued, started retaining water, and became noticeably grayer with each passing day. A trip to the E.R. revealed the truth: Tim had end-stage cirrhosis and liver cancer the results of long-term exposure to hepatitis C.
Over the spring and summer, we traveled to the University of Michigan Hospital in Ann Arbor many times. By the grace of God and lots of prayers from friends and family, Tim managed to survive through the summer and get listed for a new liver, which he received on August 12, 2003. It was a harrowing year, to say the least.
Aside from developing diabetes as a result of the transplant, Tim has done well with his recovery. He started out with a handful of pills every day, but by the end of the year, was down to one anti-rejection pill and two shots of insulin each day. Not a bad trade-off to dying, we figured.
It would have been nice to heave a big sigh of relief and continue on with our lives. But life isnt neat and tidy like that. After we turned the corner into 2004, Tims liver enzyme numbers (a.k.a AST and ALT) started going back up again, meaning the hepatitis C was once again active only this time at a much accelerated rate. It was already starting to damage his new liver.
Many people think that once you have a new liver, the hepatitis C goes away. Not so. It remains in the bloodstream forever. For many transplants, it may take years for the virus to show itself again if it ever does. Such was not the case for Tim.
The virus can be treated, but theres no guarantee that it will work. Success depends on many factors, including your particular viral genotype. Tims genotype is 1B, one of the hardest to treat, and one which has anywhere from a 20 to 40 percent chance of sustained response to treatment (meaning, the virus is reduced to undetectable levels over the long haul).
The doctors gave Tim the option of continuing as is (leading quickly back to a place hes been fighting desperately to escape) or taking the treatment, with possible side effects of fatigue, depression, nausea, rejection of his new liver, and an assortment of other problems.
Tim opted for treatment a year-long regimen of daily pills of Copegus (Ribavirin) and weekly shots of Peginterferon. He also takes periodic shots of Neupogen to boost his white cell count. Tim is one of only 53 transplant patients in the country to take the treatment which requires a delicate balance of anti-rejection drugs (immune system suppressants) and treatment drugs (immune system boosters).
His liver enzyme numbers are responding well (they started at 600 and are now below 100), and his viral count has dropped from 2 million to 240,000. This is all good, but we really wont know if the treatment has worked until six months after hes done in the fall of 2005.
Life is funny. Of course, were ecstatic that Tim is still alive a feeling reinforced with each school concert, birthday party, and family gathering we attend. And yet, we can never go back to the carefree life we once had, blissfully living each day with an it cant happen to us attitude. Now we know the truth. It can and does -- happen to people just like us and people just like you.
The trick is to find joy and happiness in something every day like the laughter of my 7-year-old daughter, making supper with her Dad in the kitchen as I write this. Life is good. Dont lose yours. Get tested.
Jane Louise Boursaw of Mission Peninsula writes for Family Circle, Womans Day, Oxygen, AARP Magazine, USA Weekend, Christian Science Monitor, The New York Times, Chicago Tribune, and other national publications. She also writes a syndicated movie review column, Reel Life With Jane. Feel free to email her at email@example.com or visit her web sites, www.janeboursaw.com and www.reellifewithjane.com.
Could you have it? A Hep C primer
Hepatitis C known as the scourge of the baby boomers is quietly raging through the blood of 5 million people in the U.S. and more than 200 million people world-wide, according to the National Center for Infectious Diseases (NCID). But thats just the proverbial tip of the iceberg, because most people now infected are unaware of it.
Between 1993 and 1998, hepatitis C infections skyrocketed by a dizzying 260 percent. Those numbers are expected to double in the next decade, making hepatitis C one of the greatest epidemics of this century. The World Health Organization believes the hepatitis C problem is now five times greater than the AIDS epidemic and growing 20 times faster. The Centers for Disease Control predicts that by 2010, the deadly virus will claim more victims than AIDS.
Hepatitis C was only given a name in 1989, but has been in the U.S. blood supply since before WWII, according to the NCID. Because blood has only been tested for it in the U.S. since 1992, anyone whos received a transfusion or blood products prior to that is at risk.
Other risk factors include any direct or indirect exposure to infected blood poorly sterilized medical instruments, blood spills, unbandaged cuts or injuries, IV drug use, tattooing, or body piercing. There are also less obvious sources of blood shared razors or toothbrushes and body secretions containing small amounts of blood. Like Tim, many people have no idea exactly how they got it.
Symptoms can be evasive fatigue, mild fever, jaundice, muscle cramps, joint aches, loss of appetite and vague abdominal pain. Many cases go undiagnosed because a decade can pass between individual symptoms as they quickly come and go. If caught early enough, though, a variety of treatments may reduce the disease enough to protect the liver from further damage or liver cancer.
If you have any risk factors, a simple blood test easy and free for those who cant afford it can save you from a world of hurt. If you DO have it, you can reduce the stress on your liver by avoiding alcohol (which causes severe damage to the liver in hepatitis C patients), as well as things like acetaminophen, vitamin A, and some OTC and prescription drugs.