Worried

My husband has HepC and our health insurance denied him one of the new meds for it, he also has cirrhosis and the med the insurance approved our Doctor says he can't take because it would do more harm so I'm praying the one he can take that the doctor can get it approved somehow. I am trying to educate myself about what's in his future with all of this and I think he has symptoms of HE now. We go sit down with our Doctor on Jult 19th 2016 to find out just what we are dealing with and if he should be put on a transplant list now. I'm just worried, he is still trying to work but he was sent home a couple of times because they said he was not acting right and they could not risk him being there so since then his iron infusion Doctor sent a letter shorten his hours from 12 hrs days to 8 hrs days and for him to be on light duty for 6-8 weeks, but it seems to be getting to him even doing this.... I have Ulcerative Colitis so all this stress is starting to make me have flare-ups and I can't be sick because I need to take care of him. But I think my husband thinks I'm trying to tell him what to do when I try to help him and it makes me cry. He stopped drinking on May 19th and he was a heavy drinker but then he started drinking that ODoul's non-alcohol beer but I don't think he should drink that either so he got ill so I told him I would ask the doctor about it when we go see him. Sorry this is so long, please forgive me but I need to hear from others that's maybe dealing with something like this.. Thank you.

10 Replies

oldestnewest
  • Hopefully the Dr. will write a letter to the insurance company explaining that he needs to take a certain drug and he has to have it because he can't take the other one. I have PBC now for 8 years. I know it is very stressful. People in my family has colitis as well and I know that stress isn't good at all. i do hope you find a solution and you both start to feel better. Take care !!!!!

  • Thank you for your reply. Blessings to you and yours 🙏

  • Dear worried...I have heard that lactulose can help with hepatic encephalopathy so your doctor should be able to prescribe that. If he is getting confused or drowsy he's probably not safe in a work place...but once medication has helped maybe he can arrange with his boss to work an even shorter day or take some work home with him.

    I would also recommend asking to see a dietician that specialises in liver disorders...it can be so confusing knowing what's appropriate and also if vitamin supplements are needed. A healthy diet can help a lot.

    I know patients with liver disease can get quite cranky especially with their loved ones who unfortunately bear the brunt...but hang in there and make sure you are getting the support you need also.

  • Thank you@Sere51789. I have read about the Lactulose but not sure if he would be able to take it because it seems to make you go to the bathroom a lot which is what it's suppose to do, so don't know if he can take it and also continue to work. He works for a major tire company so he does not have a desk job but they do have him on light work duty as of right now, sweeping or painting something but not sure how long they will let him do that after the time period is up from the note the doctor wrote. But if his doctor tells us he needs to be on it then I guess he will have to try it and hope for the best. All he seems to want to do is sleep right now...☹️

  • Maybe that's the trade off to be made with regards to HE lactulose and going to the toilet. I'd discuss with his doctor and dietician to make sure he's getting the appropriate nutrition.

    I don't know if there's a liver support group in your area where you could get more help and advice. Check the british liver trust website for more details.

    Hope things get better for you both.

  • I'm in the United States. This is just the first place I have come across in my search for support but I'm definitely going to ask our Doctor for support groups near me. Thank you ❤️

  • I am so sorry your husband is so ill and you both are going thru so much. I will pray for you both.

  • Thank you so much ❤️. Hope to get more answers and help on July 19th. It's just scary....

  • I am in the the US and have a great gastroenterologist but I still worry every time something new hits me. Prayers are headed your way.

  • We are in the US also and our gastroenterologist is ok, we have had him for years. His bedside manner is not all that great though, we always said earlier on we were gonna which but never did. I think my husband is having memory loss and forgetfulness that comes and goes. Been reading about it and don't like the sound of where he may be heading with this...

You may also like...