Following a short trip to Canada to inform his family of what was about to take place, we returned to Kentucky and to the University of Louisville Digestive Health Center to be seen by Dr. Luis Marsano. After 3 more months of testing, Tony was begun on treatment for the Hepatitis C, consisting of one injection per week of Pegasys and 4 pills per day of Rebetol. Later, they would add Effexor for depression and Neurontin for the pain. He continued on the treatment for 6 months, and upon finishing this in May, 2003 was retested and we were told the disease was in "remission". He will be retested every 6 months to a year to monitor the disease. The treatment is expensive! We're not rich and our insurance covered only half the cost of the injections (our costs were approximately $630.00 per month for the injection alone.)
Our lives changed drastically in 2002 and into 2003. Where once we would go out to eat occasionally, we stayed home; where once we visited with friends and family, we stayed home, simply because Tony was left with no energy as a result of the disease and the treatment. One minute he would be burning up (as with a high fever), the next minute he would be wrapped in blankets with the heat on because of the shaking chills. He would moan in pain throughout the night. I am in awe of the fact that not once did he miss a day of work because of the disease and/or the treatment.
In the fall of 2002, our pastor, Rev. Bob Cooper approached and asked, "What can I do to help you?" All we ever asked was for prayer, and we are so very thankful that our friends and family, world-wide, did that for us. But as time went on, Bro. Bob seemed to realize that the disease had not only "attacked" Tony, but was causing pain for me as well. After all, I was the one who saw all the pain, agony, sickness that went along with the treatment, and yet there was little I could do for Tony in the way of comfort. And, so he suggested perhaps a support group for those who have the disease as well as those who love them and care for them. We wholeheartedly agreed, and thus the Liver Disease/Hepatitis C Support Group in Glasgow was born.
It is my own personal goal to "educate" others in our city and the surrounding areas about this disease in the hopes that it will save just one person from going through what we have lived through over the past year. If you have the disease or know someone who does...ask questions--LOTS of questions of your doctors; research the disease yourself. An "informed" patient is one much better prepared to be a partner in his/her own treatment. If you are a caregiver and feel frustrated or "cut-off" from the world or are afraid to mention the disease for fear of what kind of "look" you will receive...then I beg you...find someone that you trust and feel that you can confide in. But, always know...there is HOPE...for the future...for an eventual cure. If you feel you have no one to turn to, please feel free to contact us...we've been there and done that, as they say.
May God bless each and every one of you!
7/2003