Hey Mike No Mohauk, How Ya Doin?

topic posted Wed, July 19, 2006 - 9:26 AM by  Cosmic Love
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Hey Mike No Mohauk, how ya doin?
posted by:
Cosmic Love
Illinois
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  • Re: Hey Mike No Mohauk, How Ya Doin?

    Wed, July 19, 2006 - 7:09 PM
    Sick everyday. I will be seeing the transplant surgeonoon and find out how far up the list I have moved. Meanwhile I have left work and am on disability. Thank you so much for asking Brock you made my day.
    • Re: Hey Mike No Mohauk, How Ya Doin?

      Wed, July 19, 2006 - 7:52 PM
      I understand Mike. I am always so shocked when someone wonders how or where I've been. I think perhaps we need more attention....

      How did it go at the docs? How is the patronizing Dr. B?
      • Re: Hey Mike No Mohauk, How Ya Doin?

        Wed, July 19, 2006 - 7:58 PM
        I see Dr. Bass on the 27th. My Hepatologist has been confiring with him and I will get my disability form tommorrow so that can be filed. I will keep you posted.
        • Re: Hey Mike No Mohauk, How Ya Doin?

          Thu, July 20, 2006 - 10:25 AM
          I've been thinking maybe this tribe should be called the sucessful Hep C treament tribe. Don't mean to be a downer I am very happy for all of you (especially you Bev, love ya always bud) but I see no discussion (and very little support) for those of us who are not sucessful responders and are facing some pretty heavy stuff. This certainly doesn't seem like a Hep C support group just a treatment support group.
          • Re: Hey Mike No Mohauk, How Ya Doin?

            Thu, July 20, 2006 - 5:43 PM
            Very sorry your feeling neglected Mike but we do have a very diverse group here. Many non responders I myself have failed once already, this is my second round and holding out hope but prognosis is not great.

            At any given time there are several of us on treatment and we tend to be the more vocal, commiserating with the equally miserable and all that. We do very much appreciate the input of the success stories it keeps the faith going, and admire those that have shed the dragon for staying with us to cheer us on.

            We are all facing some pretty heavy stuff on any given day, its not a matter of degrees most of us still live with a potentially deadly disease every day waiting for the time bomb to go off. It must be terribly difficult and frustrating for you at your stage in the evil dragons plan.

            The discussions tend to go in the direction of those that initiate them and of topics we have some insight to. Few of us are likely to have that much knowledge about the stage you are in and perhaps we need you to help us better understand.

            Your input and insight into this stage of your fight would be valuable and appreciated and we thank you for bravely sharing your struggle with us and sincerely hope you continue to do so and we always hope that our support is of some benefit to you too.
            • Re: Hey Mike No Mohauk, How Ya Doin?

              Thu, July 20, 2006 - 9:21 PM
              Thank you for your honesty. I will try to do better.

              I have noticed that at times in the support group that I attend. Last time, the moderator wasn't there, and someone, who is somewhat similar to your situation, explained that she had chosen to not do treatment, and this other girl in the group was all over her like it was mandatory. I asked the md last weekend why there wasn't more discussion re: that, and also that there were lots of people who were genuinely not sick enough. He did explain to me that because of the misinformation in the medical community that tells people, it isn't bad, there aren't any treatments, just keep an eye on your alt/ast, that people get freaked and can minimize it, i.e., deny the seriousness of the situation, and don't get a biopsy until they are at cirrosis and that the particular program they were doing was to inform people of choices and there was alot of talk about ways to keep your liver healthy w/o treatment and, yes less, about people with end stage liver disease, but that was deliberate also because once someone hits that place, their particular situation is so individualized that it would almost be unsafe to throw out what people do/should do/should not do. What I'm trying to say is that your situation is scary to me, for you, because you are my friend and frankly I'm not losing another one (try it Mike and I'll kill you myself), but because you are my future and it is one that sometimes is so scary for me to look at.

              So, how are you? Tell all....
              • Re: Hey Mike No Mohauk, How Ya Doin?

                Thu, July 20, 2006 - 10:02 PM
                Bev you have done wonderfully, I don't know if you know how much you have done for me.

                Thank you all for your thoughts ideas etc. I just get so frustrated these days after being a four time non responder. I remember when I was first diagnosed 15-16 years ago my best friend told me to be thankful it's not HIV. At the time I agreed since the prognosis for AIDS at the time was not good and I had lost a number of friends to AIDS, now I'm not so sure.

                Actually I am not doing well emotionally, I have been sick for over a month now and I am isolating big time. I have endured a lot in my life and sometimes it's tough just enduring. Thank you all for being here and Bev, I am very grateful to have your NYC irreverant self in my life.
                • Re: Hey Mike No Mohauk, How Ya Doin?

                  Fri, July 21, 2006 - 3:35 AM
                  I read your post Mike and thought about how to answer it being very new here and just having a good result. After reading sher and Bev's posts everything I want to say is in there.
                  Doing 24 weeks was bad enough for me, to be a four times non responder...What can I say except I'm hanging around here and I'll always give you support.

                  It's a different story for everyone.

                  Tracey
            • Re: Hey Mike No Mohauk, How Ya Doin?

              Fri, July 21, 2006 - 11:08 AM
              Very well put!! See Mike- We need you!! :)
              • Re: Hey Mike No Mohauk, How Ya Doin?

                Fri, July 21, 2006 - 1:34 PM
                >>Don't mean to be a downer I am very happy for all of you (especially you Bev, love ya always bud) but I see no discussion (and very little support) for those of us who are not sucessful responders and are facing some pretty heavy stuff.<<

                I dont know anything about what it's like in the advanced stages, so thats why I asked how you are doing, so mabey I can learn how to be more supportive in the future. Sorry that I bugged you.
                • Re: Hey Mike No Mohauk, How Ya Doin?

                  Fri, July 21, 2006 - 4:09 PM
                  You didn't bug me at all Brock I was very appreciative of hearing from you :>), it meant a whole lot. The rest of you I had to keep drying my tears I was so touched by all you said. Not only was I touched but I feel once again as if I have a place here thanks. Don't have much time gots to pick up the kiddo and get him to Karate.....
          • Re: Hey Mike No Mohauk, How Ya Doin?

            Fri, July 21, 2006 - 11:06 AM
            ouch, but I see your point. All of us are on treatment or have responded to treatment and so far haven't had to face what you are facing. But please know that we all care about you and want to offer you our supprt. But all we can do is talk about what we do know....
            However let me say that I can understand your viewpoint because when i was taken off treatment and posted I didn't feel as much support, ALTHOUGH LET ME SAY I WAS WRONG! Everyone here is supportive but we can only offer advice, etc on things we know and understand. Honestly I get alittle jealous when hearing success stories and feel like when I discuss my situation I am being a downer, BUT isn't that what support groups are for...? We all have our good and bad stories and I think we should encourage eachother to post NO MATTER WHAT! Good or bad, down or up-we should be able to say what we want and get feedback, even if it's hard for us to hear the bad. We are here to support EVERYONE with Hep. C. not just those who are lucky enough to have success. Mike, we WANT to know how you are and we want to support, even if we aren't sure how. Sometimes just talking is good enough, even if it's a downer!! :)
            • Re: Hey Mike No Mohauk, How Ya Doin?

              Fri, July 21, 2006 - 4:11 PM
              I should of hit the respond button under your name Tiffany, don't feel left out the above message was for you too ;>)
              • Re: Hey Mike No Mohauk, How Ya Doin?

                Fri, July 21, 2006 - 7:00 PM
                Tiffany, I'm so sorry. I'm really glad that you and Mike spoke up, really glad.

                I don't call it complaining, someone going on and on two days into a cold, that is complaining. This is sharing our experience with each other. The good, the bad and the cheesecake too.

                Mike OF COURSE you aren't in a good place emotionally. If you were, I would be enroute to your house to knock the denial out of you. Unless I am missing something, a) you have an illness that causes chemical depression, b) you are really sick, c) it is going on and on, d) your physicians have been somewhat non-responsive (I will resist urge to further comment), e) what they have said is not exactly party on dude, and f) you are putting in for long term disability. All the facts aside, going out on disability must have an emotional and mental impact that is tremendous. If I was in your shoes, I would be in the psych ward, you are one tough guy. Father Tom once said about someone with hiv, 'he is in a really dark room right now'.

                Tiffany, so where are you at now. Still hating docs I see. Good to see you still have your fire! Can't say I disagree with that mostly. How are you handling things now? Is there anything the group can do for you?

                You've both always given me helpful feedback and input, you do deserve something back.
                • Re: Hey Mike No Mohauk, How Ya Doin?

                  Sat, July 22, 2006 - 4:27 AM
                  Hi Mike,

                  I'm going to be honest here. To say I know how & what you feel right now would be a lie in itself, but you've made a valid post. I lost a sister to cirrhosis back in 1997. By the time they figured out she needed a transplant it was already too late. My youngest daughter was born with a liver disease, back 15 years ago at the age of 13 she had a liver transplant. Liver transplantion is a wonderful thing but I'm amazed at the hoops one must still jump just in order to climb that long list. I avoided this post because it hit home! That was wrong for me to do so, please forgive me. Any time to need an listening ear to lean on, feel free to call on mine rather it be to moan, grawl, cry, bitch, laught, whatever. We're in this together, the good with the bad. If you'd like to talk one on one with someone whom has been though the transplant, I could hook you up with my daughter.


                  Jane/Catfish
                  • This is the maximum depth. Additional responses will not be threaded.

                    Re: Hey Mike No Mohauk, How Ya Doin?

                    Mon, July 24, 2006 - 12:05 PM
                    Can I ask what happened with your daughter and her liver disease?? Was it at all related to Hep. C? I am just asking cause I have two children whom I unknowingly bore while infected with Hep. C.......... Hope I don't hit a sore subject........ :)
                    • Re: Hey Mike No Mohauk, How Ya Doin?

                      Tue, July 25, 2006 - 3:18 AM
                      She was born with a rare liver disease, long story short, it ended up cancer of her liver. As for my sister, I'd bet the farm she had HepC. How are your children doing?
                      • Re: Hey Mike No Mohauk, How Ya Doin?

                        Tue, July 25, 2006 - 1:48 PM
                        Well- I have a sneaking suspicion one may have hep.c. He just "acts" very mush the same way I did as a child, and I've also had it from birth. He's not very active, gets fatigued, etc... I asked his ped. to test for hep.c. but I think all she did was a liver enzyme test, which of course was fine, just like mine have always been. So they both go in for check ups next month, I am going to insist on the EIA or RIBA test.
              • Re: Hey Mike No Mohauk, How Ya Doin?

                Mon, July 24, 2006 - 12:06 PM
                :o)
                • Re: Hey Mike No Mohauk, How Ya Doin?

                  Tue, July 25, 2006 - 7:16 AM
                  Morning Mike. Another exciting day ahead? That could be a topic in and of itself - how to spend the day, exhausted.
                  • This is the maximum depth. Additional responses will not be threaded.

                    Re: Hey Mike No Mohauk, How Ya Doin?

                    Tue, July 25, 2006 - 10:37 AM
                    Tiffany, I had three children whilst unknowingly infected and was convinved at first that I'd passed it on to them.
                    It was actually the worst part of finding out I had it. They all tested negative, thank goodness.

                    The chances are very low but it is possible. The guilt I felt was terrible when I thought I'd messed up their lives.

                    Tracey
                  • This is the maximum depth. Additional responses will not be threaded.

                    Re: Hey Mike No Mohauk, How Ya Doin?

                    Tue, July 25, 2006 - 7:10 PM
                    I think I am beyond exhaustion, into a whole other realm I can barely make it two blocks without having to stop and rest. I spent half the day at UCSF before I finally saw Dr. Bass, I have difinately moved up in priority, he also discussed the possibility of puttin a shunt in my liver to relieve the ascities and sent a request to my Hepatologist at Kaiser to prescribe me Zofren for the nausea. Ther are a couple of other hoops I have to jump through but I will send you a message or call you bev to tell you about those.
                    • Re: Hey Mike No Mohauk, How Ya Doin?

                      Wed, July 26, 2006 - 11:06 AM
                      Wre crossin' our fingers for you! I was doing online research on hepatologists ( caue there are none in my area ) and looks like most of them ar ein the bay area, so that's a plus for you !! right? :)

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