66 - HCV - HVL 100M/++ Genotype 1 / Meld 13 / ESLD / Stage 4 w/decompensation, level moderate. On TP list. Did 6 mos. of Sovaldi/Riba and they tell me I am HCV free. Am a Writer/Artist and a perpetual Optimist. Love music...was in a band...a couple really and taught
[More] dance... Am a constant reader....Since childhood my mind never sleeps even when the body does, sleep to me is a waste of time. I love, love, love the ocean, traveling, exploring, Life, puppies, pandas and horses and of course my family and friends.
Have never met a stranger.... like meeting people and learning about them...enjoy their stories....if you listen you learn so much. Love open thinkers who believe that just by believing all is possible. "Thought transcends matter".......i.e., therefore......positive thoughts equal the strength of the will to transcend reality".
Docs tell me I am HCV free after 25 years and dozens of protocols. I was offered a liver in October and due to a folly of day...was unable to get to the hospital....had to meet with the head surgeon of the transplant unit a week later.......when he came in the room he asked where the patient was.......I said it was me.......after talking to me for about 15 minutes he did an exam and then looked at my file and said I shouldn't have even been called for the tp.
That the tp unit didn't have the updated labs, so they made the decision based on my MELD that had been 18 when on Sovaldi/Riba..... but the updated labs indicated it was now 10. He said he was shocked when I said I was the patient because I was bubbly,had normal coloring, eyes were clear, physically active to the point that was surprising to him...that I clearly had no brain fog from the questions and responses I had peppered at him after he talked to me. The fact that I was independent, driving and working part-time plus being a full time grandmother.
He said he was going to keep me on the tp list but list me as inactive for the time being but would confer with my hepatologist every 3 months and watch my MELD scores and other tests that I would be having. I saw my hepatologist on Monday of this week (12/1) for a upper GI and he said I had no varices and all looked well and he said to me...you know...you really might be able to turn this around.... So all you can is hope and believe. Wish me luck. Stranger things in life have happened. Think positive thoughts...erase all negativity from your minds even in the most troublesome days....negativity invites bad things in to your mind and body. Positivity.....real positivity plus passing it forward and helping others will bring you rewards and peace.
The thing is, I dont want to sleep. I am okey for about 2 hrs in am, 10 to about 12noon. I go out to do errands or just to be out so I dont fall deeper into depression and I crash big time. I was in store and was really weak. so stubborn I was asking for help to find things. I could hardly see, because of cataracts (going for surgery soon). but finally I had enough and went home and crashed. Bad headaches and belly pains and hugmongous charlie horses in legs. Oh well, we will see what happens. I am so glad to hear from you. You are on your way to being cured yea good news buddy. Tired now. nighty night Blue
Just a quick note to say hi! and to let you know that i am in my 7th week of treatment with Riba and Solvoldil and just keeps getting worse. Doctor called saturday after a blood test on friday and said we had to decrease dose because i am anemic now and she is also worried about kidney function. I kilnda thought I was getting off easy. I was told it could get worse but I ignored it and set myself up for dissapointment I hope you are okey or at least hanging in there. I am very depressed and I feel as though I lost you as a friend, even though I know you have other friends and it is only the treatment and my mental status playing tricks on me. I gotta go i feel like puking. bye bye buddy blue
Hi heart, It is nice to hear from you. You said you were dizzy, is that because of treatment. What drugs are you on? Mzkity said something about a transplant. I feel like a fool, because I do not remember everything. I think you said you are getting one when you are virus clear, right? Please forgive my memory, it is getting worse. As far as treatment goes. Got approved for drugs and got 1 month supply then my insurance screwed up. Now I am stuck with a plan that does not cover anything until September. After that I throw myself on the mercy of the higher ups to give me another chance. I dont know what is going to happen. But I am so swelled up in hands legs and feet and of course tired. So there you have it. I am rooting for you buddy. stay strong love you Blue
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