I'm new to the forum. I'm hoping to share my Dad's story, in hopes it may help someone, and hoping to get more information and support from those currently caring for loved ones with the illness, and from those currently struggling with the disease.
Dad became infected with Hep C in the 80's from a blood transfusion. He didn't find out he had the disease until the early 90's, from a routine blood test. In 2005 we found out it had progressed to Cirrhosis. Dad never had any symptoms. Dad has always been a moderate beer drinker. When we found out he had Hep C, he was advised to stop drinking beer, but continued against the advice of his docs. He went to the Hep doctor yearly, had the liver biopsy, etc. His liver panels always came back within normal range. about
5 years ago, he developed Diabetes, which now we have discovered is a common problem with Hep C patients. His family Dr. contributed the diabetes to the sugar in the beer he drank. 4 years ago, he developed a hand tremor. The family Dr. sent him to a specialist that determined he had carpel tunnel syndrome, and did surgery on both wrists. Of course, that only made his strength weak and never corrected the tremors. Now, we understand the tremor is part of Hep. C. For the past 2 years, he's experienced muscle wasting, which we were told was part of the aging process (he's now only 64 years old). Now we understand it was another symptom. He also had severe leg swelling that his Dr. told him was due to the diabetes, which we now know was ascites. His family doctor knew he had Hep C., and the specialists all new he had Hep C. The only symptom his Hep Dr told us to look out for was severe confusion. He also was very cold all the time, and doctors never had an explanation for this. He also developed a shuffle, that could not be explained. Dad stopped drinking beer in the spring of 2010, because he felt so bad all the time, and hoped that would make him feel better.
In February 2012, Dad fell and shattered his wrist and broke a vertebrae. The hospital put a cast on it and prescribed a pain reliever, and unknown to any of us, it had Tylenol. The wrist was so severely broken, he needed surgery. His walking became worse and about
a week later, we noticed some confusion. We took him back to the ER. We asked them to check his liver, because confusion was the sign they told us to look for. They performed a liver panel, it came back within the same range as his previous liver panels had the year before. The ER said it was his pain pills(although he had never had this reaction on pain pills previously) and then informed us that the medication had Tylenol, so they changed his prescript
ion. 4 weeks later, Dad was scheduled to have surgery for A-fib. We called the cardiologist prior to the surgery, explained that he had fallen, and described his condition. The doctor said it was still safe for the surgery.
Mid March, 2012, he had the A-fib surgery. After recover, he was very "out of it". My dad has had many surgeries in the past, and he never had this reactionl. We brought in a nurse who observed Dad and she was very concerned that he had suffered a stroke. Dad was hallucinating, etc. After several hours of this behavior, the anesthesiologist and he admitted Dad should not be acting this way. He didn't recognize any of his doctors, thought his previous employer was trying to "pick his brain", believed he had a blue mustache......it was scary. Tests revealed he did not have a stroke. Doctors thought he had delirium from a brain disorder and denied it could be liver failure. Upon our insistence, they ran a liver panel the next day. The results indicated liver failure. They released Dad when the liver panels appeared to be back down to what they considered normal.
We took Dad to his Hep Doctor that same week. He ran more liver panels, and concluded Dad was in end stage liver failure, and gave him a MELD of 10. (previously he had an 8 since 2005). He said the confusion was encephalopathy and the surgeries likely pushed him into liver failure.
Nearly 4 months later, we have been referred to the UW for transplant. We are almost done with the tests and will know by the first of August if they will list him. He has hepatic encephalopathy. He is on xyfaxin (sp) and crystalose, but it doesn't seem to completely take the fog away. Since his MELD score was taken in April (which was a 10), he is now at a 20. He's lost a lot of weight and he's nothing but skin and bones. He's been hospitalized at the end of May for severe encephalopathy. He has ascites in his belly, but not enough to drain. He barely eats anything.
We're a close family. My parents have been married for over 40 years. I feel like my dad fell that february night as my dad, and woke up got up someone else. While we realize now he had some symptoms (tremors, muscle wasting, diabetes, etc), he wasn't this helpless person he is today. He did the finances, drove, took trips with my mom, and now we can barely get him to and from Doctor appointments. He is so weak, he cannot walk without a walker at home and a wheel chair is crucial when we have 8 hours of testing at the UW.
I'm so mad it has come to this. I'm mad my dad didn't stop drinking beer the minute he found out he had Hep C. I'm mad that the specialists involved in various treatments never considered Hep C was causing his symptoms. But most of all, I'm praying he is listed on the transplant list and gets a new liver before it's too late.
Thank you for listening to my Dad's story. I know it was long winded, but maybe his story will help someone else.
Post Edited By Moderator (hep93) : 6/30/2012 8:11:31 PM (GMT-6)