Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Thank you for your support and encouraging words. I'm doing good under the curcumstances - I still work full time. I do feel however that recently my health is taking a negative turn and I am not sure how much longer I will be able to work. I am just so very tired and have a lot of joint pain. I also seem to be having more problems with my memory and depression. I am working towards going on disability - I just think that if I could rest more and not be in the stressful atmosphere of work that I will do better. My liver has to last me four more years - I have to be five years cancer free to be on a list. I have this bone marrow test today - I pray that it will be ok. I think it will - I'm sure my bad blood test are a result of my liver - they just need to make sure. I will know in a week - if there is a problem there I really am in serious trouble. Even though you know it is going to be ok -still really scarry. Thanks again for your kind words -- In HepatitisCSupportGroupForDummies , Deb wrote: > > > Honey how are you in general besides the portal hypertension in cirrhosis stages ??? > > We also have many members in later stages or have been there for info any help or support for you. We do understand where you are now. Some of us have been in your same shoes stages. > > We know it's not easy just hang in there keep us updated about you. > > Any testing scans labs GI scopes soon ???? > > It was much easier for me would feel much better if I watched my cirrhosis diet very closely and my Dr's team gave me many safe Rx's in my case to help relieve complications. > > The rx's for portal hypertension now related to HCV liver stages are helping to relieve build up of pressures in multiple systems not just for control of blood pressures from prior history dx of it. > > Your Dr's have many different types of medical personal trained specialists programs to help you or to refer you for just about all concerns from dietitians for proper diet for you to all medical and emotional care in-home help support and for better quality of life now and for the future. > > Just ask for any help needed for you. We never know unless we ask them. > Sometimes we need to ask or politely keep asking demand it for us. I'm not familiar with your insurance and it's a shame our best medicare care still goes by our type of insurance coverage and ability to afford it. > > Never Give In Never Give Up On You and Always Hope For A Better Future !!!!!!!! > > Hell Demand it. > > All The Best. > > Deb > 54 - New Orleans > Liver transplant 3-4-01 > Failed responder tx's pre/post transplant progression > HCV geno 1a for 32 years now and Still Going Strong > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 I am so sorry you are going through all of this I hope everything will work out for the best and your right work is to stressful for anyone so I know that if you get your disability it will proably help at least with your depression GOOD LUCK >> > Honey how are you in general besides the portal hypertension in cirrhosis stages ???> > We also have many members in later stages or have been there for info any help or support for you. We do understand where you are now. Some of us have been in your same shoes stages.> > We know it's not easy just hang in there keep us updated about you.> > Any testing scans labs GI scopes soon ????> > It was much easier for me would feel much better if I watched my cirrhosis diet very closely and my Dr's team gave me many safe Rx's in my case to help relieve complications.> > The rx's for portal hypertension now related to HCV liver stages are helping to relieve build up of pressures in multiple systems not just for control of blood pressures from prior history dx of it.> > Your Dr's have many different types of medical personal trained specialists programs to help you or to refer you for just about all concerns from dietitians for proper diet for you to all medical and emotional care in-home help support and for better quality of life now and for the future.> > Just ask for any help needed for you. We never know unless we ask them.> Sometimes we need to ask or politely keep asking demand it for us. I'm not familiar with your insurance and it's a shame our best medicare care still goes by our type of insurance coverage and ability to afford it. > > Never Give In Never Give Up On You and Always Hope For A Better Future !!!!!!!!> > Hell Demand it. > > All The Best.> > Deb> 54 - New Orleans> Liver transplant 3-4-01> Failed responder tx' s pre/post transplant progressi on> HCV geno 1a for 32 years now and Still Going Strong> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 I am a geno 3a in ESLD with a zero viral load. At first it was 6 months if I cleared at 4 weeks. I didn't clear until week 5 so they added another month for a total of 7 months. Now because I am doing so well they want to extend it to 48 weeks. This is a very hard decision! my Tx nurse has allot of long term experience and would not be recommending it unless she thought it was best for me. Yah but what about my pristine heart, lungs, pancreas, and kidneys? Hard to say how much damage there will be from side effects. I am depressed big time so made an appointment with my Psychiatrist. Maybe my meds need to be increased due to this uncontrollable rage and slight depression creeping in. Oh I got my Assistance dog Bad part is she is only 8 weeks old. Its a pleasant distraction from Hep C and get me out of bed and the house. Her name is Athena and she is a HUGE Blue Doberman Pincher. Right now we are potty training her, teaching her to follow me, walk on a leash and socializing her. I can't wait till she get he Assistant liscence because then its only a skip and a jump to Certified Assistance dog. (tired) Dragon Fighter Extrodinaire .. > > , I can't remember now. what type are you, 1a? > > > > Peace small > > _____ > > Is this a hepatologist? ALL my counts took a drop after 1 week on Tx. > Most bounce back throughout the week. Some like my RBC seem to keep > dropping. I was at Mayo this Monday an every one is still very > pleased with my results after 11 weeks on Tx. I on the other hand am > PISSED off big time. Nothing new these days. My Hepatologist, Tx > nurse and liver transplant nurse all ganged up on me to extend Tx to > 48 weeks!!!!!!!!!!!. Waaa. I told them lets talk about it after 7 > months of Tx is done. When I asked why my Tx nurse said she saw more > people relapse after 7 months than she did at 48 weeks. Nothing was > said about that before I started this crap! I asked her if I had a > choice and she said of course but if I relapse it will be daily > injections for a year. Then they mentioned the Procrit " sigh " so hard > to stay positive right now. What good is it to be alive if every > organ in your body is distroyed by these drugs or worse yet your > crippled with pain. > > So in 5 months I have to make yet another decision. Hopefully the > Gods will take it from me and send me into liver failure as soon as I > get done with this round. I know I'm a big baby but shit it stinks to > keep getting bad news and having to make some of the most difficult > decisions I have ever had to make!!!!! > > > > > > _____ > > > I just got a call from my DR (actually three urgent messages) to > stop tx. I would be on my 12th shot this Friday. The DR said my > counts were low but my enzymes were still good. I have to go back in > the morning and do a new draw and go from there. I am so bummed at > the moment. You try to do everything right and still not right. > > Have any of you been through this? What are my other options if > there are any? I hate to think I've felt like crap and been a queen > bitch for the past few months to have this be it. Boy, can I pour on > the pity on myself. I think I hear violins off in the distance. > > Thanks, > > Amber > > Sent via BlackBerry by AT & T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 HI everyone, quit treatment after shot 4, deathly sick, feeling like imgoing to die, can't breathe, psychotic, its horrible. I can't do it.Not everyone can. Good luck and god bless the rest of you. Honey treatments on the market now are not medically safe enough or many people not medically able to do it. For some the high medical risks are not worth any possible benefits from it. We have many members who can not do the forms of tx now on the market and some failed responders living life well made their decisions to wait for new totally different forms of tx to hit the market. You know you tried your best and have no regrets for not trying it. You didn't fail the tx meds failed you. It is the only forms of tx we have now on the market. There are conflicting medical reports of pt's put on lower or very low doses called maintenance tx doses and if any help or value from it. Dr's still don't know all the medical facts about HCV and tx's yet. We had a couple of members on low maintenance doses of tx for years finally stopped it and had high rebound of viral load don't know if any help was gained but they still didn't feel like themselves did have some sides lower quality of life while on it for years. New different forms of tx are on the fact tract for release and also HCV Protease Inhibitors. The forms of tx's now on the market use the host us our entire body systems to try and work causing many and severe sides complications for us. The new forms of tx are suppose to target the HCV cells themselves and eradicate it not using our entire body and all systems suppose to be safer kinder to us and with far less total body sides and complications. I was medically pulled off tx twice for severe medical problems and not worth the possibility of losing my life stroking out on it was already blacking out couldn't breathe and high inner-cranial pressures in head and did have a small TIA stoke with no lasting damage. I asked my Hep Dr point blank about it. His response was if it was me I would stop tx. Your case your severe medical sides are not worth any possible benefits from these forms of tx on the market now. Pegasys was not your saving grace as we had hoped for. I am 32 years now with Chronic HCV geno 1a accept it and can still live my life to it's fullest happy and content. I am a HCV Survivor not clear because I'm in control of my life and happiness not my HCV. Hang In There !!!!!!!!!!!!!! All The Best Deb Quote Link to comment Share on other sites More sharing options...
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