Hepatitis C is a disease affecting the liver, caused by the hepatitis C virus (HCV). The infection is often chronic and can lead to cirrhosis, which is scarring of the liver and generally only apparent after many years. In some cases, those with cirrhosis will go on to develop liver failure, liver cancer, or life-threatening esophageal and gastric varices. HCV is spread primarily by blood-to-blood contact associated with intravenous drug use, poorly sterilized medical equipment, and transfusions.
Soon after his diagnosis there were hardly any symptoms, other than occasional to frequent fatigue. We continued to live a normal family life maintaining a home and raising our two boys. In 1999 his primary care physician made us aware of a Hep-C study that was to be starting at the University of Southern California and signed him up for it. He was accepted as a candidate in the HALT-C study program and a series of tests and procedures soon followed. He was put on the study trial treatment which was a combination of interferon and ribavirin. The treatment itself made him very ill. Nausea, fever, body aches and extreme fatigue were all too common, as well as loss of appetite and weight. Eventually the side effects diminished as his body adjusted to the treatment. While on the treatment he was closely monitored by the medical team who headed the trial study. After twelve months of treatment, he was found to have no decrease of the viral load and was categorized as a non-responder and the treatment was stopped. From then on he would just be monitored for the next 36 months through blood tests and biopsies. The disease progressed without showing any outward symptoms.
In 2006 we began to contemplate moving from Los Angeles as our boys were growing fast, our neighborhood was deteriorating, and the school district was not providing a sound education for our sons. In 2007 we moved to north Texas which has provided us with a much better quality of life and a great school district for our boys. Life has been good.
In December 2012, our lives were turned upside down and we are on an emotional roller coaster. My husband's health has worsened. His liver is now at the end stage with cirrhosis (scarring of the liver) and is experiencing the following symptoms of a decompensated liver:
Swelling of the ankles and feet (pitting edema)
Abdominal swelling due to fluid accumulation (ascites)
Enlarged veins in the esophagus (esophageal varices)
Disturbances in thinking (forgetful)
He recently had to make a trip to the ER because his belly became swollen to the point that it was putting pressure on his diaphragm and making it uncomfortable to breathe. He has also had an endoscopic procedure (EGD) to band/clamp the blood vessels in the esophagus because they were close to rupturing and causing internal bleeding.
When he took a turn for the worse, we felt alone and unsure what to do. Our families are in California so looking to someone to talk to makes it that much more difficult. We decided to keep it to ourselves and handle it the best that we could. We were soon hit with the reality of how stressful it would be dealing with the practices of some medical providers that put the almighty dollar ahead of care and compassion. My husband's major concern was the astronomical cost, the mounting medical bills and all the "what if" questions that arise.
As of today my husband is feeling OK. Although he feels fatigued every day, he says he will work until he is no longer able to get out of bed because this makes him feel "normal". He never thought that at the age of 49 the disease would keep him from being more active. He is currently on medication to prevent ascites. He is also on blood pressure medicine to minimize a reoccurrence of varices. Unfortunately his liver is so badly damaged the he will now need a liver transplant. It is a waiting game.
Then came a blessing; a neighbor heard of or our situation and reached out to us. Then other neighbors came forward with offers of help and support. The outpouring of help from our friends and neighbors has been unbelievable. They will always be in our hearts. This has given our family renewed hope and the strength to fight this disease vigorously. We are truly blessed to have friends, neighbors and community with such caring hearts, compassion, and kindness. Our faith in the Lord is unwavering. Only God knows what is in store for us. We pray for his guidance, but also for those who are less fortunate and find themselves in similar or worse situations. Our biggest hope is that new treatments, which according to the doctor are constantly being tried, will be available soon and a transplant will not be the only hope, but an option for treatment.
We are thankful that this fundraiser will help us with the burden of the medical expenses that are constantly being incurred. We thank you for your concern and we are very grateful for your prayers and help.
Thank you from the bottom of my heart.
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