My Life with hep-c--part 3 Jan 01 '05    Write an essay on this topic. Tweet The Bottom Line Hepatitis C is awful for the spouse and kids. Things have changed considerably in the past year. I have learned about blood chemistry, organization, and ammonia-enduced brain encephalopathy. My husband has now been diagnosed with end stage liver disease. His viral load remains relatively low, however, much of the other blood chemistry is roller-coastering between bad and awful. The worst aspect of this is the low platelets which cause bruising and spontaneous bleeding under the skin or from the mouth or nose. After a relatively calm summer, we had a bi-polar friend who split with her husband who later died due to complications with her diabetes and bi-polar disorder, we decided to work on our various personal projects. Mine was to get in better physical shape. Hi's personal project has been and continues to be music production. He has a music project about half finished and lacks funding to finish the recording and sound engineering. Any volunteers? He had a really out of it day in July which lead us both to believe there was a problem with some of the medication he was taking. He stopped that prescription and then discussed it with his doc. He had a much better rest of the summer. In October, we took a much needed family vacation to Carolina Beach, NC. However, after four days of camping in a tent, Hi had a bleed that simply would not stop after 3 hours. His lip had a spot on it that opened up and bled for a really long time. We were driving through central North Carolina headed home toward Tennessee when we began seriously thinking about ER facilities somewhere near Raleigh, NC. However, we managed without a hospital visit. During the Thanksgiving Holiday, the brain fog crept up on Hi once more. This time it was much worse than had been previously. I thought he had had a stroke as he could not make sentences with any coherence. He could not dress or toilet on his own. And, to top it all, he was disassembling all of the electronic gizmos in his part of the house. He has lots of stuff like that too as he is a guitarist with pedals and amplifiers. On the way to the hospital I remember praying that he would not be like this forever. I knew that I simply would have to put him in a skilled care facility if his mental status was seriously compromised forever. This incident prompted me to pursue a Durable Power of Attorney for his care. The ER doc at Livingston Regional Hospital, Livingston, TN was very kind and good at helping me organize things. He explained that talking about options such as a liver transplant would now be in order. He told me how to keep a notebook with the most recent blood labs on the top page followed by a list of current prescription medications. I went home and made a list. The doc also told me that now would be a good time to do the things we had always been thinking about doing but had put off until a better time. *Ouch!* Since then, I have found a great support site which Mountainhigh led me to. Thanks. http://forums.delphiforums.com/liverfailure The Liver Failure forum is full of useful and practical information about liver transplants, liver treatments, and all kinds of other useful information about diet and blood lab reports. I have appreciated this link more than any other. http://groups.msn.com/sherrysdragonslair Sherry's Dragon's Lair has some very poignent open letters to folks who may not really understand what people who are living with hep-c are going through. http://groups.msn.com/SilverfoxsLair Silverfox's Lair has some great information about applying for SSDI and how to go about making that job 1! Christmas came and went with a new diet thanks to our visit with a dietician and the Liver Failure support group. I still find it interesting that no matter how much I learn about this there are people who still try to tell me that we're not doing enough or that a liver transplant will solve the problems. As difficult as it may be for some to accept the terminal aspect of this illness, I have found an amazing amount of grace during this difficult journey with my partner. I may fall apart once it is finished...but I will treasure every moment we've had together. I have a very supportive church and minister who endures all of my crazy venting, jeep rides in the country with a friend, and prayer partners. My daughter who is 9 has found herself some support from the back neighbors who have adopted her as their grand-child. They take her with them to church on Saturdays--different denominaton, on outings, and to Adventure Girls group. It amazes me how much easier Rose has been since having these outlets through our neighbors. Again, I am blessed and thankful for friends who see our need and extend their help in meaningful ways. But, yet, they support our family structure rather than tear it down. I have also realized that there are people with whom I must cut ties. I have to eliminate "toxic" people from our immediate family circle. Our bi-polar friend's pull on our family energy was a serious drain which taught me a valuable lesson. I needed to involve more professional help in her situation even though she did not want me to do that. I have learned that emotional bullies seem to be drawn to us. Why, I do not know, but I have learned all about saying NO to things that I do not feel are beneficial for me, my child, or my husband. I have realized that the best thing we, Hi and I, can do for each other is be pleasant in each other's company, get a power of attourney for medical and financial care while Hi's brain is working, get a Living Will, and just hang out and be friends. Hi and I have decided that our home is our castle, and that we are the king and queen of our domain. Treating each other as nobility has been a special treat. Hi is the person who ultimately has to live with the result of his medical decisions. Whichever thing he ultimately decides to do, I will support his choice. However, we will continue to educate ourselves and be our strongest medical advocates. Our doctor is willing to research all new ideas that we come up with and frequently sends us to a hepatologist at Vanderbilt Univ. Research Hospital. Our Doctor reminds us that we are probably more up to date on some of the new research simply because we are deeply involved and interested in the outcome. The best thing he does for us is help us make informed decisions based on Hi's current lab reports, general state of health, and consultation from specialists in hepatology. The current dietary regimen includes a lot of fresh fruit and veggies, rice, beans, fruit juices, milk, cheese in moderation, and one serving of meat per day if that often. Meat causes the ammonia levels in the blood to rise causing the brain fog to creep up. The medication to prevent the ammonia is called Lactulose and is a very strong laxative product. Hi calls it anti-freeze because it has glycol in it. He has not lost his sense of humor. Thanks for allowing me this opportunity to share my experiences.

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