Cirrhosis and a strange thing going on

Welcome to the forum Poly. I feel the same way you do about this forum. I just joined myself.

I'm sorry to hear that your husband is resistant to seeking help. I experience the same problem with my husband from time to time. I can't really blame them. It is such a long and exhausting process. But, as caregivers, we must keep hope alive.

You have good reason to be concerned. It's possible that he has Shingles (a viral infection of the nerves similar to Chicken Pox). This usually occurs on one side of the body. I don't mean to scare you, but he should definitely be seen by a doctor immediately especially since he is running a low grade fever. His immune system is compromised by the Cirrhosis and an infection could be detrimental to his health.

Take care. You are in my prayers.

Penny

Hello polydipsia and welcome to HealingWell. I'm glad you found us.

You maybe right about it being an infection. It kind of sounds like a staph infection. My husband got that MRSI staph infection. If he had an open wound it drained puss. And he would have the low grade fevers with them.
Being in and out of ER's and his many hospitalizations is how he got it.

Is your husband on Xifaxan. It's an antibiotic that they sometimes give to liver patients for infections. Is your husband having trouble with encephalopathy? Usually that comes along with the infections.

Actually your husband sounds like mine in the beginning. He wouldn't take his meds right either at first. Once he came to terms with life expectancy if he didn't he got a lot better about taking them. My husband didn't like me telling him anything about his illness,meds,doctors,ect. We got into quite a few heated discussions over his non-compliance.

I understand your fears about a bleed out. It was my biggest fear. But lucky that didn't happen with my husband. Thank God. But to be honest it doesn't sound good that your husband is bleeding through his ears. Has he had any blood transfusions lately? Maybe he is due.

Hang in there..........thoughts and prayers..........

Thanks for the welcome Pscwife, Pink Grandma and Shadowsghost. I don't think it's shingles, I've seen those up close and personal and it doesn't really look like it, but then again, could be wrong. I agree with all of you and I have told him all of this but again, he's resisting. We have three kids and it's right before Christmas. I know he doesn't want to ruin the holidays but personally I think death would be a bummer, lol. Sorry, I have a strange sense of humor, hope it doesn't put anyone off.

Pink Grandma, no he's not on Xifaxan, he's on ciprofloxacin. He's supposed to take it on Mondays, Wednesdays and Fridays. He's been fairly good about taking it lately. He's only had full blown encephalopathy once at the beginning of the year. He was aware enough to be resistant to going to the hospital. I literally had to wait until he was so out of it, he didn't know the date, the day or the year. I don't even want to have to wait til that point again. He still has not done a DNR or a power of attorney, etc. I cannot get him to. I realize it seems really final, but he knows his prognosis. He was actually going to Nashville to see about a transplant back in June. The doctor then told him he had a 50/50 chance of surviving a year without a transplant. After that first year he has 0% chance. he won't be going for the transplant or to be put on a list because he decided to keep drinking. We went round and round about it until a wise person reminded me that he is 52, and I should pick my battles and that is one I will lose. It really kills me. Our kids are 8, 13 and 19. I am 38 and feeling about 10000 lol. I know that he's tired of being poked, prodded, cut open, etc. I can't pretend to know how much he hurts and all, but he really isn't making it easier on himself. He's also really lost his sense of humor. He really is just ready to die. His last transfusion was in October when he went in the week of Halloween, which is ironic since that is the 'anniversary' of his being diagnosed.

Shadowsghost, thanks. i totally agree. My sister is a nurse, so she helps me out when I get something strange come up. I do transcription for a living so of course my husband will ask me to translate for him but then doesn't listen to me, lol. When he does finally listen to me it's because he realizes it's not going to just blow over.

Pscwife. I have read a few of your posts and I'm sorry for your situation too. Please don't hesitate to email or whatever if you want to vent, etc. I try so hard to be optimistic for him and keep things going. Though times like this I just want to throw my hands up and say fine, sit there and feel sorry for yourself and get worse, though I never do. Sometimes keeping it together for the kids and him, working and life in general, I just really want to go find a corner and let go, lol. My inlaws live here in town but they are not any help. And I can't expect them to be. My MIL is almost 80 and my FIL is 85. I really appreciate y'all posting and the prayers. I'm glad I posted. Maybe now I'll keep my sanity? Lol.

Hi, Poly, and welcome to the forum!  Guess what?  I was a medical transcriptionist for 15 yrs., prior to retiring on SSD in '05.  Having that terminology is a real ace in the hole, as you can understand the reports.  Also, I made sure my doctors knew about my job, so they would use medical language and not simplifly everything.  It made them a lot more open with me.

I'm a sober alcoholic (22 yrs.) and you're right...if your husband is intent on continuing to drink, there's nothing you can do.  Personally, I would leave.  I've done just that with 2 ex-husbands and a long-term b.f.  (I won't go into the psychology of why I chose these partners.)  However, I had been sober for 7 years when I was diagnosed with hep C, thank God.  I developed liver cancer and cirrhosis.  But I'm still here...because I don't drink, I eat a very healthful diet, and I do everything the doctors ask of me.  I also have a positive attitude.  Alcohol, as you no doubt know, is a depressant...so your husband may be thinking that he's going to die anyway, so he may as well drink, etc.

Everyone should have a Living Will, regardless of whether they are now sick.  In addition, you really need to get him to sign a Medical Surrogacy so that you can get info and make decisions for him when he is having bouts of encephalopathy.

I agree with the others that it sounds as though he has an infection and it really needs to be treated before he becomes septic.  My aunt just died of an infection.  Also, the bleeding from the ears is not normal.  When I had hugely swollen feet and calves, I had some "weeping," but it was light colored fluid and only in the edematous lower extremities.  BTW, I'm 65.

If your husband continues to drink, anything that is done for him is really just a band-aid and is not going to do a lot of good.  Like Dr. Phil, I "tell it like it is."

My heart does go out to you and your children.

Lol, Connie, you did MT too? Do you ever miss it? You probably don't miss the lowering pay rate, lol. I have considered leaving on a few occasions but my 13-year-old made it very clear that he does not want to. He has his issues with his dad, but he doesn't want him to be alone either. I honestly don't think he will be around much longer. Lord knows I could be way off base, but every week that goes by, he's a little sicker and a little weaker and looks more like death. We've had our 'discussions' on his drinking and how it's not really doing anything to be treated. The last time we went to his doc they gave him morphine for his pain. This is the first time they've ever given him anything other than hydrocodone or Darvon. My sister told me to start expecting the end. She said that's what they'd do in the nursing home. That it's the end medication. I do my best to make things as pleasant as I can. I have tried on several occasions to get him to discuss the Living Will and all but I think it's just too scary for him. He usually gets snarky when I bring it up. I don't care if he doesn't name me as the power of attorney, he can name his parents if he wants, I just think he needs one. And needs to discuss what treatment he does and does not want.

Lucy, Jeff has the random nose bleeds and clotting issues too. The sores start out looking like that somewhat too. They are awful and he itches all the time. He cooperates up to a point. I think at this point, almost 4 years later, he's just tired of being sick and is ready for it to end. Then some days he says he doesn't want to die. Understandable of course. It's really been a blessing to have found this board. Like so many others, I've learned a lot just from lurking and the compassion and help y'all are so willing to give is amazing. I've been to other boards that honestly just aren't that friendly. Lots of luck to all of you in the coming new year. And I hope to be active on the board as much as possible.

jen

Jen, I missed it at first but stay amazingly busy...so now I'm glad I'm not working, especially with this economy; glad to know I'll have a certain amount direct-deposited in my bank every month and don't have to be worried about not enough lines or being laid off.  And I certainly don't miss the stress!  I was an independent contractor the last 6 yrs. that I worked, so there was no way to know from week to week how much I would make.

It does sound as though your husband isn't doing well if he's getting morphine.

Feel free to vent any time and do keep us posted.

Poly, work is also a great distraction.  Between the chronic fatigue of hep C and the pain from sitting following hip replacement and revisions, I just couldn't do it anymore.  I was only 4 yrs. away from full retirement, anyway, and got what I would have gotten then when approved for SSD.  about the same time I was approved for SSD, I was diagnosed with liver cancer...so it worked out for the best.