Hi CC, welcome to the forum.
I changed the name of your Thread so that more folks stop by to read it. We have many regular members but we have even more lurkers who peek at the posts and gleen a lot of support from reading even if they don't post. This gives them more chance to find us.
If you become a regular here you will find a lot of support from patients and partners! Each have a different perspective and it will be good for you to hear from them. David is post Transplant and has successfully beaten back his Hep C (which returned after transplant). He has returned to physicla work and is our poster boy Success Story.
music is a patient also, dealing with her own Hep C symptoms AND the side effects of Sovaldi and Ribavirin treatment. She has been eloquent in the descript
ion of her feelings about
brain fog and anxiety as she works to clear her body of the virus, and hopefully avoid transplant.
My partner, Mike, is post transplant (May 1, 2011, so almost 3 years) whose Hep C returned with a vengence and his fibrosis is really high. His MELD score is "only" 8 right now, so he has only begun to "get sick" again. Hopefully his Sovaldi/Olysio treatment will clear the virus and his partially damaged new liver will continue to function well for a long long time.
I have to tell you that I responded to your post emotionally. I was back to 2010 and in your shoes. Mike was unreasonable, grumpy, and could not manage his meds or any part of his life. He could not drive and, as above, grumpy and unreasonable. I didn't know if I could manage long term. But what would he have done? I loved him and wanted to work thorugh it, though it seemed too hard many days. Some of our patients have managed alone quite well. But most rely heavily on a caregiver.
I will tell you that after transplant I have talked to Mike often about
how it was. And he thinks I am making these things up. The most telling is his inability to remember that many friends came to "say goodbye" as no one expected him to make it to transplant, he was so sick. They came to Florida from Utah, Calfornia, Germany, New York, Connecticut!!!! And he cannot remember those visits. Says I am making that up also.
So, after this is over and your Hubby clears Hep C and gets a nice transplant, the only one who is going to remember all this with clarity is YOU. Ever single event.
I was so at my wits end I went to a counselor and doctor and had some talk therapy around the theme of caregiving and taking care of myself and got some meds to keep me on this side of the deep end! And that worked for me.
I could not leave him alone, so when I did some trips I had his daughter come here to stay with him. It was imperative. He COULD not be alone.
He COULD NOT do the meds and could not for quite a while after transplant. But after a while he took an interest and then did them with me checking and then after a few months took it back over. You have to be the judge But being angry that he can't do them is fruitless. Fussing at him to do things is like fussing at a 2 year old becuase he isn't potty trained yet...it just doesn't help and makes you both mad.
The food thing is pretty typical also. I surrendered there and found a few things he would eat and preared them for him. He would eat fruit, yogurt, chicken without flavoring, rice, soups (homemade was okay so long as not overly flavorful). I bought those Ensure or Glucerna shakes with lots of protien and stuff because he was not eating normally at all. But, he was dying, so... I kept ice cream around and made shakes (with STUFF that was good for him mixed in when it would take it). He would eat cereal. I think you're on the right path about
not eating salty stuff....chips, canned soups, junk.
ON the Xifaxan: I was a warrior on that one. They wanted $1300 a month from us as it wan't on the stupid formulary. I wrote letters like:
Xifaxan is the one thing that is keeping him grounded in reality. Are you denying the wounded men on the battle field morphine...after all they are just dying? My man is just dying and deserves to go out without being wracked by encephalopathy when there is a medicine that brings relief. Fortunately for (name of insurer), he won't need it long. He will either die or be transplanted, so please approve it for a few months.
I did things like cc'd my Senator and asked it they were allowing the insurance companies to act at death squads after all?
And they caved.
Did you approach the manufacturer about
heping out? www.xifaxan550.com/hepatic-encephalopathy-resources/savings-card
With all the new treatments for Hep C on the market, and with the research that says those transplanted free of the Hep C virus have a better long term prognosis, has your doc considered treating him with one of the new combination drugs while Hubby is waiting for transplant? The old Interferon/Ribavirin treatments were too rough for a really ill person, but the new drugs are less toxic!
I hope you become are regular poster...looking forward to seeing your thread in the next days.
Forum moderator - Hepatitis
Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014
Post Edited (MamaLama) : 3/9/2014 11:04:16 PM (GMT-6)