I have my results.....

Hello Everyone:

Well.....drum roll please...... I am Undetected!!!!! OMG....can you tell how happy I am???? I found out on Wednesday morning. This is the best news I could have had. I know in my heart and soul that I am going to beat this. I have been taking my meds exactly the way they tell me to and never miss a dose. I have been told that one of the keys to having the drugs work is to do everything they tell you to do and to make sure you eat plenty of fat with the Incivek. I am doing all of that. I am also drinking gallons of water....another important thing.

I do have to write about something that did happen to me on Monday morning: I had been talking with other people with Hep C and I had been asked what Stage of liver disease I am at. I did not know. I was never told this during any of my visits to the clinic. I decided to call my NP and ask. She called me back on Monday and told me that I was Stage 4 cirrhosis. I could not believe she was saying this to me. I knew I had Hep C and I knew that I would have some liver damage....I was not expecting to hear that I have one of the worst Stages that you could possibly have. I absolutely lost it over the phone. I was a total mess. My NP said she wanted me to come in to the office and speak with me in person. She said she could see me Wednesday morning. I had to go through all day Monday, Monday night, Tuesday and Tuesday night with the thought that I was going to die. All I could think about was that I wouldn't live to see next Christmas and my dear old parents were going to lose another daughter soon. I just about couldn't make it through those days. My husband came home on Monday and just held me and cried with me. We were both so sad, confused and didn't know what to do. I had asked my NP on the phone how she came up with this diagnosis. I did not have a biopsy, nor any other definitive test for liver damage. I did have two ultrasounds. She told me that they were basing this on my "abnormal" platelet count and the amount of time I had Hep C. She had me down as contracting it around 1970!!!! This is totally wrong. The earliest I might be able to say I may have contracted it would be early to mid 1980's...she is off by at least 10 to 15 years. I told her on the phone I wanted a second opinion and that I totally disagreed with her.

After spending the time from Monday to Wednesday morning in a zombie like state, tears, lying around and completely depressed.....I was in her office Wednesday morning. The great and wonderful news was given to me that I am Undetected at week 4. Talk about a roller coaster ride.......down in the darkest of depths and then on top of the world. This is one crazy disease / treatment!!!!!

My NP sat down and began to explain why she tells me they believe I am Stage 4 cirrhosis: she is calling this "presumed cirrhosis"...based solely on the platelet count and how long they believe I have had Hep C. My ultrasounds are normal, my spleen is normal, my bloodwork, including AST and ALT are all good. I told her that I still do not believe this. Unless they do a test on me, such as biopsy or some other new test, I will not believe this. She told me that they will absolutely not do a biopsy while I am on treatment. She said that if I can travel to Ontario, I may be able to get a fibroscan test. We do not have this in Nova Scotia. I would have to pay for travel, etc. I am thinking of doing this and will await more information on it. This is my only option to find out for sure where I stand. I have to tell you here and now that this term "presumed cirrhosis" should not be allowed. How can they tell somebody they have something so bad as Stage 4 cirrhosis based on nothing more than some numbers of platelets and what they presume to be the length of time I had Hep C???? I really want to have a test done to confirm. I'm not sure what I will do but I am considering many things. If I have to travel to Ontario to find out...perhaps I will.

My only other thought is that now that I have reached the Undetected part of my treatment, I know that I will be cured in time. I have to be tested for my VL at 8 weeks and 12 weeks. If I am still Undetected at both of those times, I am pretty much assured that I will complete my treatment in 24 weeks and will reach SVR. That is another thing....because they are saying I am Stage 4 cirrhosis, they do not go by the "Response Guided Therapy" course. They tell me that if you have cirrhosis, you must do 48 weeks of treatment. Again, I cannot believe this is happening. Unless I can get definite proof that I am not Stage 4 cirrhosis, they believe I am and will treat me as such. This treatment is something I knew I would do for 24 weeks....I had accepted that and was thinking that is what I am doing. The whole game has changed now. I really don't know what to do. I do believe in my heart of hearts and in my soul, that I am not Stage 4 cirrhosis. I just need to get proof. Everything I have gone through....all my tests and bloodwork and everything I feel, shows me I am not that far along.

I should also mention that if, for some strange reason, I am definitely Stage 4 cirrhosis, if I am UND during the whole course of treatment and I do 48 weeks, my liver (the wonderful little organ it is) will regenerate itself and heal itself. I have been told that if all works out good and I attain SVR, I will be able to live a long, healthy and normal life. So......as long as the treatment works and I become SVR, the actual Stage 4 cirrhosis is not as big a deal as I think. It all depends on the treatment and my SVR. The only real answer is time. I need to keep taking my meds and doing everything I am supposed to do. I am doing that.

Well, that is about it for now. I continue to have little to no side effects.....I do have nausea and the awful feeling of being bloated after I eat my supper. I have realized that I have a pattern right now: I get up every morning and I feel very, very good. I feel good until about the time I take my Incivek at 3 p.m. I start to feel nausea and generally a flu like feeling. I usually have my nap from 3 until 5. I get up at 5 p.m. and sit for a while. I still feel sick and it usually continues to go on for the rest of the evening. I have tried eating Saltines and drinking ginger ale. These don't really do anything for me. I have discovered the new version of Gravol and it is just ginger root and you chew two of them. This has made me feel better and they are not real drugs.....just natural ginger root. I asked my family doctor and she said they would be safe for me to take. So far, so good.

I am coming up to my 6th week of treatment. That means I am halfway through my time for Incivek. I will be so glad when that drug is done!!!! I think that is the one making me sick and feeling so bad. I have been told by others that once you stop taking the Incivek and having to eat so much fat, you will feel better. I look forward to that.

I guess I will sign off for now as I am tired and must rest for a while. I do not go back to see my NP until November 29th, my 8 week check up. I will be tested then to see if I am still UND. I am sure I will be, but we will see. If anything new comes up or whatever, I will update and do a new blog.

Thank you everyone for reading this and please wish me luck!!!!

Love to all....

Believer

xoxoxoxoxoxox

1 Reply

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  • Dear Believer;

    sometimes it helps to know that you are not alone, and you are not. I too have the same diagnose of liver damage, and I am sure there are many more. Some maybe in worse shape than we are. I am thankful that I learned about it now rather than after it was too late. If we just go along and test negative for Hep C then we can beat the rest. One day at a time and only stay on today. If you feel good today, then everything else doesn't matter so much. :)

    I wish you all the best and don't forget you have tested negative for the virus already. there are better days coming. :)

    Talk soon,

    Lucile xo

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