Wow I'm pretty impressed with the quick warm welcome. Thank you all. Tig the tx is 12 weeks, so this Memorial Day will have it's own memories. I will say this whole thing changed my life....for the better actually! I have learned more about myself and what is important to me in this 2 yrs than the previous 51. Material things really took a back seat to relationships, and I learned this new thing called "Listening" it is just amazing what you hear once you are open to hearing people. I didn't talk to anyone except my wife and Dr. for about the fist 9 months, because I too, thought it was something people like me just don't get ( read stereotyping) then I started to learn about myself, who I am, what is important, and how can I help others. So much so that now for some reason I have people coming to me for answers to their problems, and work seems to think I have all the answers. I've never once said why me...In fact, I'm thankful to have been given the opportunity to realize how fragile we humans are at the same time as being incredibly resilient. What's been the worst....hmmm Nothing is worse than acites when it's bad not sure how women handle pregnancy oof! Paracentesis was bad but relative to the acites so there is an immediate payoff. Fluid on the legs. Muscle cramps....these are not your night time leg cramps, this can sometimes be a deal where it starts in one foot and just keep moving up until your whole body is cramped,and spasming... I found out I have muscles where I didn't even know I had them thanks to these things. Fatigue...I look fwd to the day I don't have it, and wonder if for the past 30 yrs I could have had a lot more ambition ??? Memory loss has got to be the most embarrassing and humiliating....nothing like being in a board room full of directors and forgetting your presentation or the subject you were speaking to. Anyway I hope these new drugs are available at a more reasonable cost soon so that everyone can get cured before they have permanent damage. Thank you all for responding to my story and listening to my perspective. I better get back to work !
Cinnamon Girl said
Mar 18, 2014
Hi Duane, and welcome from me too, glad to have you here!
Thanks for sharing your story with us, you have a very positive attitude and you are quite right in thinking that it is possible for you to see a noticeable improvement in your liver health once you have cleared the virus. As Tig said, we have members with cirrhosis who have had very successful outcomes from treatment and have achieved SVR, and now you have the opportunity to turn your life around with the Sovaldi/Olysio off label combo.
You`ve done all the right things to help your liver and prevent any more deterioration and I wish you all the best of luck with reaching your goals and getting off that transplant list.
Keep us updated, and hold on to that fighting spirit!
Pjwms10 said
Mar 18, 2014
Your story is so closely like mine it's eerie. I too had emergency surgery in 1972 and 2 units of blood. I too began swelling in the legs in 1995 which prompted blood work ups and the discovery of Hep C gen 1a. 4 1/2 mths into treatment with interferon/riboviron in 2008 I bled out to discover I had end stage liver disease with severe chirrossis. 3 liver biopsys showed new healthy and regenerated tissue in the liver. Last biopsy about 4 years ago. I believe this old liver is still willing to hang on and rebuild. I'm thankful to be starting these new meds sovaldi/olysio and I too believe I will come off the transplant list. My meld scores are in the 12-15 range. I tolerate the diaretics and still have lower leg water retention most days. I enjoy fishing and being outdoors so can't wait to launch my boat once again now that I'm medically retired. I'm also hopeful that I'll regain some much needed muscle. Good luck to you on this journey and may God continue to bless your life.
Tig said
Mar 18, 2014
Hey Duane,
Welcome Brother! I'm so glad you introduced yourself to the forum. It's a great place to be, good knowledgeable people that want the same things you do. I really like your attitude and the positive outlook you have. It makes a difference, trust me. Keep it up!
We do have members that have experience with the same situation you're experiencing and they will likely chime in at some point at talk with you about it. I can tell you that people here with cirrhosis have gone on to SVR and had remarkable fibrosis improvement. I don't have any information on that for uncompensated cirrhosis but we'll try to find out additional information for you. The objective is to reach SVR and if/when you have that transplant, you won't have to consider this post op. We do have one member that is post transplant and currently undergoing treatment and doing very well. You're so right, the liver is a remarkable organ and it doe regenerate when the conditions are right. You're doing what you can to get your health to an optimum level and I commend you for that. The treatment regimen you're on is certainly one of the absolute best available and you will likely see some good improvements in those numbers, in short order! Do you know for sure that you're on a 12 week course or possibly 24? I would want to try for 24 if they would approve it.
Sounds like you've got a great and supportive family. I can't tell you how important that is, you already know! Keep them in the loop, share everything with them if possible. That open door of communication makes these treatments so much easier for all involved. I'm so glad you're here and look forward to talking with you in the future. Good luck Duane!
Tig
Dzdayscomin said
Mar 17, 2014
Hi everyone I've been reading for a while but I thought maybe people could find mutual benefit in my existence here. So here is my Hep c story. I'm a 53 yr old male that found out I had this disease Jan. 2012 , I didn't know I had it, and other than always being tired and achy.....and being a 31 year married man in a faithful great relationship , that never did drugs or had any reason to think I could have ever been exposed to it. I was brought to my knees after being diagnosed with end stage liver diesease and cirrhosis, only to find out that 6 months after we were married we were in a terrible car crash and I had recieved blood to save my life that must have been contaminated (1983) the only reason I got checked some 29 yrs later was my legs were swelling. since that time over 2 yrs ago it has been a roller coaster ride, when I found out my MELD was 12 platlets 50 advanced as high as MELD 17 and platlets 40 INR 2.1 I am 13 months on the transplant list and have always been considered to far along for any treatment....until NOW! I had to do a lot of self promotion and stay on top of my care...ie diet, no more beer, very low salt intake etc...and read forums like this as well as read studies etc..anyway I started the off lable use of Sovaldi/Olysio no riba or anything else, I was declined twice but then out if the blue I was approved, I have great ins so my total cost will be $66.00 for the 12 weeks and I started 3/5 and the only sx have been fatigue a few hrs after taking them each day.I always continued to work FT I thought after the 3rd day I felt a bit more energy but could have been positivity and pure jubilation IDK? I have my 1st labs 3/19 and don't know what to expect, but at least for the 1st time in 2 yrs I feel hope instead of despair....I have 2 kids grown and a grandaughter that I feel I will now have more time with. But behind that riddance of the virus which I am very confident of, I still have a liver that is in pretty bad shape...so what do people know about cirrhotic livers and the ability to heal, I know they say once it's at that stage there is no regeneration....but I plan to be different, See i fear the transplant and all that goes with it more than anything and even if I can hold steady at a meld if 15-17 I think the body can do amazing things if you can stop damaging it...am I too optomistic? I've lost 65 lbs, had one paracentesis, and seem to tolerate my diuretics just fine and have kept the acites to a min. had one kidney stone and no other problems, except memory issues and thankfully no HCC, I have MRI's every 3 months and labs to stay on the list. so my journey is two fold ......one SVR 12 & 2 is to be able to get off the transplant list. There is much more to share but this is my intro. My hat is off to those that had to take the harsher treatments and didnt give up...ever think you'd hear someone wish they only had fibrosis? Sorry humor helps me keep my sanity.
Wow I'm pretty impressed with the quick warm welcome. Thank you all. Tig the tx is 12 weeks, so this Memorial Day will have it's own memories. I will say this whole thing changed my life....for the better actually! I have learned more about myself and what is important to me in this 2 yrs than the previous 51. Material things really took a back seat to relationships, and I learned this new thing called "Listening" it is just amazing what you hear once you are open to hearing people. I didn't talk to anyone except my wife and Dr. for about the fist 9 months, because I too, thought it was something people like me just don't get ( read stereotyping) then I started to learn about myself, who I am, what is important, and how can I help others. So much so that now for some reason I have people coming to me for answers to their problems, and work seems to think I have all the answers. I've never once said why me...In fact, I'm thankful to have been given the opportunity to realize how fragile we humans are at the same time as being incredibly resilient. What's been the worst....hmmm Nothing is worse than acites when it's bad not sure how women handle pregnancy oof! Paracentesis was bad but relative to the acites so there is an immediate payoff. Fluid on the legs. Muscle cramps....these are not your night time leg cramps, this can sometimes be a deal where it starts in one foot and just keep moving up until your whole body is cramped,and spasming... I found out I have muscles where I didn't even know I had them thanks to these things. Fatigue...I look fwd to the day I don't have it, and wonder if for the past 30 yrs I could have had a lot more ambition ??? Memory loss has got to be the most embarrassing and humiliating....nothing like being in a board room full of directors and forgetting your presentation or the subject you were speaking to. Anyway I hope these new drugs are available at a more reasonable cost soon so that everyone can get cured before they have permanent damage. Thank you all for responding to my story and listening to my perspective. I better get back to work !
Hi Duane, and welcome from me too, glad to have you here!
Thanks for sharing your story with us, you have a very positive attitude and you are quite right in thinking that it is possible for you to see a noticeable improvement in your liver health once you have cleared the virus. As Tig said, we have members with cirrhosis who have had very successful outcomes from treatment and have achieved SVR, and now you have the opportunity to turn your life around with the Sovaldi/Olysio off label combo.
You`ve done all the right things to help your liver and prevent any more deterioration and I wish you all the best of luck with reaching your goals and getting off that transplant list.
Keep us updated, and hold on to that fighting spirit!
Hey Duane,
Welcome Brother! I'm so glad you introduced yourself to the forum. It's a great place to be, good knowledgeable people that want the same things you do. I really like your attitude and the positive outlook you have. It makes a difference, trust me. Keep it up!
We do have members that have experience with the same situation you're experiencing and they will likely chime in at some point at talk with you about it. I can tell you that people here with cirrhosis have gone on to SVR and had remarkable fibrosis improvement. I don't have any information on that for uncompensated cirrhosis but we'll try to find out additional information for you. The objective is to reach SVR and if/when you have that transplant, you won't have to consider this post op. We do have one member that is post transplant and currently undergoing treatment and doing very well. You're so right, the liver is a remarkable organ and it doe regenerate when the conditions are right. You're doing what you can to get your health to an optimum level and I commend you for that. The treatment regimen you're on is certainly one of the absolute best available and you will likely see some good improvements in those numbers, in short order! Do you know for sure that you're on a 12 week course or possibly 24? I would want to try for 24 if they would approve it.
Sounds like you've got a great and supportive family. I can't tell you how important that is, you already know! Keep them in the loop, share everything with them if possible. That open door of communication makes these treatments so much easier for all involved. I'm so glad you're here and look forward to talking with you in the future. Good luck Duane!
Tig
Hi everyone I've been reading for a while but I thought maybe people could find mutual benefit in my existence here. So here is my Hep c story. I'm a 53 yr old male that found out I had this disease Jan. 2012 , I didn't know I had it, and other than always being tired and achy.....and being a 31 year married man in a faithful great relationship , that never did drugs or had any reason to think I could have ever been exposed to it. I was brought to my knees after being diagnosed with end stage liver diesease and cirrhosis, only to find out that 6 months after we were married we were in a terrible car crash and I had recieved blood to save my life that must have been contaminated (1983) the only reason I got checked some 29 yrs later was my legs were swelling. since that time over 2 yrs ago it has been a roller coaster ride, when I found out my MELD was 12 platlets 50 advanced as high as MELD 17 and platlets 40 INR 2.1 I am 13 months on the transplant list and have always been considered to far along for any treatment....until NOW! I had to do a lot of self promotion and stay on top of my care...ie diet, no more beer, very low salt intake etc...and read forums like this as well as read studies etc..anyway I started the off lable use of Sovaldi/Olysio no riba or anything else, I was declined twice but then out if the blue I was approved, I have great ins so my total cost will be $66.00 for the 12 weeks and I started 3/5 and the only sx have been fatigue a few hrs after taking them each day.I always continued to work FT I thought after the 3rd day I felt a bit more energy but could have been positivity and pure jubilation IDK? I have my 1st labs 3/19 and don't know what to expect, but at least for the 1st time in 2 yrs I feel hope instead of despair....I have 2 kids grown and a grandaughter that I feel I will now have more time with. But behind that riddance of the virus which I am very confident of, I still have a liver that is in pretty bad shape...so what do people know about cirrhotic livers and the ability to heal, I know they say once it's at that stage there is no regeneration....but I plan to be different, See i fear the transplant and all that goes with it more than anything and even if I can hold steady at a meld if 15-17 I think the body can do amazing things if you can stop damaging it...am I too optomistic? I've lost 65 lbs, had one paracentesis, and seem to tolerate my diuretics just fine and have kept the acites to a min. had one kidney stone and no other problems, except memory issues and thankfully no HCC, I have MRI's every 3 months and labs to stay on the list. so my journey is two fold ......one SVR 12 & 2 is to be able to get off the transplant list. There is much more to share but this is my intro. My hat is off to those that had to take the harsher treatments and didnt give up...ever think you'd hear someone wish they only had fibrosis? Sorry humor helps me keep my sanity.