Started posting a few weeks ago, then all hell broke loose...

Hi all,

Sorry to have gone AWOL so soon after starting, but Hep C/ESLD - Cirrhosis hubby hit the skids in a big way. He was released yesterday after more than a month in the hospital, one week of it spent intubated in MICU with a septic infection that nearly killed him; and now he's home with Hepatic Encephalopathy - and he's angry and mean.

I feel like I'm losing him in bits and pieces, it's awful. He's stubborn in the best of times but this has been an awful 30 or so hours.... He won't cooperate, keeps jacking up the bathroom heaters but won't drink enough fluid, won't give me his blood sugar numbers, won't do anything I ask him basically - and is treating me really, really badly. He's on 4 Lactulose a day, and 2 Xixifan along with probiotics and a host of other meds - could this be DIABETIC Encephalopathy?

He has an atrocious ulcer on his heel that requires home health care, but he tells me he's going to "fire" them. He's very paranoid on top of everything else. I feel hopeless, I have no real-time emotional support, and I'm running the gamut between panic, anger and grief. In addition to everything else, while he was in the MICU our beloved dog became unexpectedly ill and had to be put down. I thought I would lose them both on the same day - I'm still reeling.

I'm sorry if I'm whining, I KNOW his problems are what I should be focused on - but I'm so worn out. The hospital coordinator took his HE personally, and shoved him out prematurely, IMO. Also with only two hours notice, I wasn't ready... I don't know if I can do this.

His MELD is 18, and his first followup post diagnosis is on Thursday of this week - I'm terrified. I know he has to be too... The HE is the worst thing I could have ever imagined, and I wonder if he'll ever be normal again.

I guess I'm just venting - I'm exhausted and keep tearing up at weird moments. Sorry.

I didn't realize there was a Care Givers Thread - I hope I didn't offend anyone, ESLD sufferers honestly have nothing but my empathy and compassion and I didn't mean to be insensitive or offensive, I'm really sorry.

He's taking 30ML Lactulose 4 times a day right now, it was working well at 3 prior to the MICU, so I don't know what's going on. The current plan as I understand it, although there has been some flux due to his infection, is Hep C Treatment, then Transplant Evaluation. If he had been stable enough to travel when he was in the ICU, they would have sent him to Strong (Rochester, NY) for a transplant right away (I was told). Since he's been out his score went down to 18, 3 weeks ago it was at 11.

Discharge was to follow up with the GI/Hepatologist, and Nephrologist. His kidneys were strained but they signed off on them while he was still in the hospital - I think it's a precautionary follow-up.

He seems to be responding well to the HE treatment, but yesterday and today he was lethargic, non-responsive at times, then very aggressive and abusive. Tonight I saw what I think was hand-flapping for the first time, although he has had some intermittent tremors for awhile. His sugar went down to 49 this afternoon, then after OJ and Graham crackers to 70, then 90 then 175. He's had terrible diarrhea, and isn't drinking enough fluid. He won't for some reason, he's usually always thirsty - I think he's had less than 24 ounces total today. I'm worried about it.

Thank you for the navigation tips, Connie - very much appreciated, I'm still learning the ropes in every sense :). This site has been a sanity-saver over the last month, even though I didn't comment or post.

Shellshocked, no harm done.  I'm curious about the statement that he could've been transplanted "right away" in Rochester.  Has he completed transplant evaluation yet?  That would be required for him to even be listed--unless I missed something and he is already listed.

You'll get a lot of support and suggestions in the Caregivers thread.

Hugs,

Connie