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SarahJ 2 more hospitalizations of HE in May, the last stay was for 10 days & first ascites removal of 3 liters. However, got the word in July he is not being placed on transplant list due to comorbidities. His MELD has been between 11 &14 for 2 years, HE episodes increasing but MELD doesn't change much even with HIGH ammonia. His GI doc for past 4 years withdrew. He only has PC & Cardiologist. He will have more hospitalizations but no specialist. System sucks. Killing me as caregiver for sure!
My husband has had hep C since he was 13 years old. He’s 42 now. he was diagnosed with cirrhosis of the liver stage 4 in September 2020. he was on a treatment for three months. I’ve read a lot about the symptoms and complications even after the treatment has ended. He hasn’t been diagnosed with HE but he’s showing symptoms and I’m very worried and tired too.I feel drained. He’s emotionless lately and he has some episodes of just saying mean and hurtful things.My heart is broken! :,( help please!
Gayle, did you ever find any help. This is my life in a nutshell right now. When he has episodes he yells and doesn’t remember why. He stares off blankly in his own world. I feel like I have to constantly baby him. There is no us anymore. There are never future plans of any kind. He holds it together more when people are around. I feel like a support group would be amazing.
History: Husband diagnosed w/cirrhosis 2010. Stopped alcohol then. Had annual scans. 2018 developed H.E. symptoms. H.E. episodes got much worse in 2020 & required 3-911 calls & hospitalization. MELD score 12 but H.E. bad. Dr referred him for transplant screening. Big change in care and a lot of education being offered now. Found blockage in heart during screening. Stents being placed because everything compromised (30% survival). Transplant listing estimated for this summer. Long process.
My wife has been diagnosed with Liver Disease for over a year now. She experienced Ascites and everything that goes along with LD. She also has HE after she had the TIPS procedure. Just wondering whats next. And yes it is tough being the caregiver and work full time with working overtime because she doesn't bring home an income.
My husband is an alcoholic, and in 2015, had a stent placed in his liver, it was revised in 9/2019, he relapsed the next day. He has now been sober for 61/2 months, very proud of him! The last two months he has had HE. 2 times per week, hospitalized twice, this last time, today the interventional radiologist widened the stent as there was less flow going into the liver, but rather around. He now has a better flow going around the liver. I can empathize with Gayle about her husbands behavior.
Survivor spouse of HE. Cared for my DH thru 10 years until he passed three years ago. For those caregiving: for behavior difficulties, try to remember that it’s the disease talking, not your loved one.
Malrylf2008
My Husband has stage four cirrhosis, he will be 71 in Feb that’s also the two yr mark since he was rushed to hospital throwing up blood and we found out he had stage four cirrhosis. He’s never stopped smoking are drinking either. he’s obviously affected by the toxins in his brain , he can’t talk in a normal tone every answer is in a raise voice , he calls Me horrible names too, I get up at 3 am go to bed at 7 just to have more of my day without conflict! He makes odd mistakes too .
December 15, 2022 • Houston