Father having a first episode of HE

[zvhipp]

My father had drained 8 ltr ascites on 8th. He felt good and his liver plus kidney function reports were within mid normal range and improved in comparison to previous reports.

However due to drain his albumin came little less than required level. After couple of days he had constipation and couldn’t clear his bowl even though he felt urge. We have him dulcolex suppository as he wasn’t willing to go to doc. However he developed fissure and couldn’t clear bowl. He carried on for another week like that with pain and discomfort without bowl. He was stubborn and just didn’t want to go to doc but finally he couldn’t bear it and visited doc. They removed fecal impaction and re did his reports and his creatinine 3.79 from 1.5, potassium came 6.1 from 4.

They started treatment but just when he started feeling better, slowly he slipped in to precoma condition. Doctors started medicine and he is conscious now but not in his senses. He is screaming, not recognizing, sometimes calling my name, crying. It’s hard to see. His ammonia had gone high 200 because he didn’t clear his bowl as it should have been according to doctor.

I am just sad that he lost all good progress just because he refused to visit doc for constipation which was solved by doc in few minutes, and now he is lost in HE.

Doctors are doing what they can but as he is having multiple organ issues and ascites also returned. I just hope he comes back to his normal self 😔 this is a terrible condition to see him in.

[AyrshireK]

Is Dad prescribed Lactulose and Rifaximin as routine? This would be usual for someone with cirrhosis to try and keep Hepatic Encephalopathy at bay. The lactulose is a laxative but has an additional function in removing toxins via regular toileting. Rifaximin is an antibiotic used to help deal with toxins.

It's a pity his condition has deteriorated so severely with his lack of willingness to go to the doctors.

Have you seen the British Liver Trust page and document on HE? britishlivertrust.org.uk/in...

Hope his condition improves somewhat.

Katie

[zvhipp in reply to AyrshireK]

Thank you.

No he wasn’t prescribed lactulose because his LFTs were within normal range so far. And we kept his protein intake from veg and within acceptable limit. He never showed any such symptom which doc felt to prescribe lactulose. But he started taking it for past week as a stool softener. HE just dropped from nowhere and unexpected.

[AyrshireK in reply to zvhipp]

My husband has never had any sign of serious HE and has been prescribed lactulose from day one of his diagnosis with cirrhosis and when he was assessed for transplant a couple of years later Rifaximin was added to his regular prescriptions.

Thankfully he only has mild symptoms with it and never anything too dire.

Katie

[zvhipp in reply to AyrshireK]

I am more worried about effect of all meds and iv infusion/injections he is being given as it’s adding to ascites, seems about 10ltr now and all of these putting load on kidneys to make it bad to worse. I just hope he gets fine, can’t imagine family without him.

[Lam1e in reply to zvhipp]

So sorry to hear about your Dad. I needed regular drains for ascites and was always prescribed Albumen depending on how many litres I drained. Can you ask them if they are considering another drain to make him more comfortable? And ask about Albumen? I couldn’t have the diuretics as they caused problems with my kidneys, so drains were the best option for me. I had a head CT scan to check if I was showing signs of HE and although only had very mild symptoms had rifaxamin and lactulose.

I hope he starts to get better soon🙏

Lesley

[Laura009 in reply to zvhipp]

Cirrhosis causes many different symptoms and affects many parts of the body so requires vast amounts of various medication. Lactulose and rifaximin are essential to get rid of the toxins causing the HE.

My husband had a carrier bag full of meds for all the symtoms and a 2nd full of meds to counteract the side effects of the meds in the 1st bag. Thankfully once the HE had cleared he knew exactly which meds he was taking for each symptom and when to take them. I think the task kept his mind off the booze !

[Jason68]

Hopefully he will be OK, went into HE while on holiday in Spain. 3 months in and out of comas, mainly in. But once I got back to UK and treatment provided so much better.

[zvhipp]

Thank you all. The good sign today was he recognized us all. Although couldn’t speak sentences much but recognized and called family members by name. Than again slowly again stopped recognizing all. Although he remembers me, he again making painful sounds and slowly again became weak and lost in his own illusions.

The hospital had called another gastric for opinion although they felt happy with slow progress. But other gastroenterologist Said that he has jaundice and from visible symptoms he has only 1% chance of surviving this. It broke our heart. I told doc that please do not give enema if this is final opinion as he has developed fissure and repeated enemas are giving him severe pain, on top of it, 80% of enema is not even reach inside.

But doc said it helps him reduce ammonia . I said i know but please find another way as I do not want him to suffer. I don’t know what to do. Losing my mind over this sudden flip of his health.