Thank you so much for your thoughtful note. I am glad your hubby is OK. I will skim through your posts since that was 7 months ago! I felt a deep sense of relief when I saw names I recognize still active on the forum. For the longest time I could not get it together sort of dropped off the grid. Take care :)
Thinking of you, I hope all is ok where you are, Dee
If it's not one thing it's another. I am glad that your hubby is feeling better but it ***** that we have to fight so hard for our treatments and that they keep on changing stuff on us everyday. I hope your mom goes back to assisted living. I would love to do a show for her if I was there. I am not sure if I told you or not, but out of the clear blue sky they changed the criteria and have turned me down for treatment. The head honcho down here is going to bat for me. She is a tough cookie. More testing coming! On a good note at least we have this forum to support each other. Post me if you need me. Love Blue
Just a quick note to say hi! I am just checking in on everyone. I was feeling a little lonely and needed to reach out to the people who are having or have the same disease I do. I don't expect everyone to talk to me everyday, but I always see everybody talking back and forth and I feel like I am not even here. I guess I am just feeling sorry for myself. I'll get over it. How is your hubby these days? I hope he is feeling better. Tell him I was asking about him and you are both in my prayers. Blue
Oh I forgot. Did you take the picture of the owl. I took one just like it. I would like to show you but I have got to find it first. When I do, how do I send it to you through medhelp? Blue
Just a quick note to say hi! Still here. I hope your hubs and you are feeling okey. Later
Hi...I was thinking about you and your husband the other day. How is he doing? I am going on the sovaldi/riba....they wouldn't do the O because of my liver decompensation. But my HCV viral count is so high....all I do is sleep. I can sleep for 6-8 hours...be up for 2...then back to sleep for 4....etc. Or I just can't sleep at all then crash. Swear I have SAD so when the weather finally breaks it will be better. Is your hubby going to start on one of these protocols? Hope so. Get rid of it before it causes severe cirrhosis. Little wary of the riba...last time I took it affected my skin and hair...maybe it will be reverse this time...LOL....school of Hector Positive Thinking....he is doing so well and I'm so happy for him. Send me a msg sometime...I try to answer them. :-)
Still waiting on pre treatment viral load should have that any day. The nurse said they were not planning on testing till after week 12 but I plan on asking for week 4 viral load test any way. They are going to test at weeks 1,2,4,8 & 12 for regular blood work CBC etc
Thanks for keeping in touch
Good luck to you
Well so far day 3 don't really feel a thing hoping the virus bugs are feeling it all!
Thanks for your note.
I have the meds in hand!
I will take my 1st doses of Sovaldi and Olysio this Wednesday 3/19 with last pills on 6/11
Wish me luck!
Have you heard from rivil? If so is she okey? I hope everything is going well for your hubby and you. As for me, I am still waiting for April to come around to start treatment. I don't know what kind though. I'll keep you posted. Oh and have you heard from shelly? Your bud Blue
Thank you for all your encouraging words! You are the best:):):):)
Just a quick note to say hi! Just dropping by and thought I would stop in and see how you and hubby are doing. I am still here. I am going to do treatment april or may. Have you heard from shelly? I think thats her name, you know the one who had surgery. See ya Blue
Ran out of room on that last note
Thank you so much for sending that info. I think 2014 will be the year both of our husbands will finally clear this virus.
That will make it a year to remember!
I had emailed that clinical trial to his doctor and transplant coordinator a couple of weeks ago. Given his particular medical condition, they said he would not be eligible for it so for that reason they are going with the sovaldi and ribavirin for 24 weeks. This video is encouraging: http://hepatitiscresearchandnewsupdates.blogspot.com/2013/11/video-sofosbuvir-ribavirin-therapy.html He is doing much better right now since they doubled the Xifaxin to 1100 mg per day. God willing these Hep C meds will finally get rid of this virus for good. Hector said he was undetected by the second week and remained undetected for the next 47 weeks, then relapsed. Being gt 1b and having HCC also may have been contributing factors to his relapse.
Hi, there has been so much about this surgery. Two Surgeons backed out. To risky. I am finally having it done tomorrow.
Happy New Year! I sent a message to my HR rep and they said the policy is to show disability for a year and sometimes up to 12 weeks more if a cure is coming, so I begged her to reconsider as I may be able to come back in a few months with new treatment. I await her decision.
Happy holidays to both of you also, great news about the hubby. Fingers crossed this will the year... Best always
Advocate you are very thoughtful and kind, thank you for the nice holiday wishes. I am really glad to hear your husband is still doing so well and that 2014 may offer a promising solution. A MELD of 6 is wonderful! He is very lucky to have you on his side being so proactive in his health management. Sorry I am a bit late but Happy Holiday to you both as well, Take care my friend!
Just a quick note to say hi! I just tried to post you and it would not submit, so I am trying again. Like I said I have a bad memory, but I gather by mizkityl post that your hubs is doing okey. 'that;s great Have a good new years. Your Buds Blue
Wonderful news about hubby. We're on the same "check-up" schedule. I had mine at the first of Dec. One tiny varice. (sp). Any way were all good!!! Kitty
Just a quick note to say hi! And give thanks for all the good that we do have, enjoy your Thanksgiving.
How is everything going for you lately? Busy with travel plans for the holiday or are you taking on the family gathering yourself? I'm getting more excited to see the progress of the new drugs for treatment reaching significant milestones towards general populous use.
Just a quick note to say hi! I hae been thinking of you. I tried to write you a few days ago but this site said you were not accepting notes. I just want you to know I keep you & hubby in my prayers for a cure and for health & stability. I know this is the hardest journey to take. Know there are many others thinkig of you two and keeping you in thoughts...
Hi I am so glad I have some people to reach out to. I am a hard time. I feel like I am a mean cold emotionless person, because I haven't broken down or cried. I need to release my feelings. It seems as though I don't care, but that just isent so. I listen to the song I played at Wendy's funeral everyday in my car. I play it over and over and over again, in hopes that I will be released from this emotional bondage, and feel the feelings that I so desperately need to feel. It was suggested that I go to a bereavement group for people who have lost loved ones in a tragic way. Maybe I will. In the meantime I have to fight to stay alive for the rest of my family. How is your husband? I will pray for hlim bllue
Just stopping in to say hi & Thanks for all the inspiring quotes you post.
Some days I need to go outside of myself and you have lots to offer. TY
Hi Advocate, I have missed your posts lately. I hope you and your family are well.
All the best to you,
Hope all is well with you, the weather is good and your husband is stable.
Thank you for everything! You are such an amazing person... so selfless and caring!! Thank you so much for being an advocate for so many!! Wish we could all get together and meet face-to-face... you are one of several whose neck I'd hug or whose hand I'd shake! You are a blessing to many!!
Have you heard from Summer? I know she has been very busy getting things lined up but it's been a long while since she has posted, is she alright?
Have a great day! Smell the fall in the rain & enjoy the season change.
Thank you for thinking of me !
I would like to share some good news with you:
First is is official - I have achieved SVR - whoohoo !! and...
....from an e-mail from my surgical oncologist, Dr. Pippa Newell:
" Brian! I'm so happy to share the following with you:
AFP is 11.5 (down from 100). AST is 36 and ALT 48.
MRI shows no areas of viable tumor and all veins are patent (no tumor thrombus). Hurray!!! "
Of course what happens next and in the future remains to be seen, but for now I will take and cherish this good news.
Take care & best regards,