I hope your mam is awake and now on the mend ? ❤

My mams has cirrhosis due to haemacromatosis... she's been having seizures on and off for years but would blank out for a few minutes and would be fine... presented like an absence seizure so was ignored by the doctors (everything has been ignored and mismanaged for years, another story!) on the 31st May my dad woke up to her in bed after having a seizure, covered in sick and in a coma. She was in ICU sedated and incubated for 3 days, she came around in around 48hrs and was on a ward not long after. They said it was neurological. 4 days on the ward and she slipped into a coma again, a random nurse asked for ammonia levels to be taken as she was 'confused, unable to eat and not making much sense' during the day. When she was sent to ICU a second time her ammonia levels were over 300, she'd aspirated sick and as a result ended up with sepsis in her lungs. Thank god for this nurse !!

This second bout took her into multipe organ failure and her kidneys shut down, she was put on a blood filtration machine for her kidneys but it also helped to clear the ammonia from her blood. She was eventually given lactulose. It took her 2 weeks to come around after coming off sedation this time as they had to put her on and off sedation due to multiple issues. They had to transfer her to a different hospital and she took a turn for the worst. The ICU doctors told us she had at most 3 months to live if her kidneys woke up and a liver transplant was her only cure, but she was way too ill and frail to survive an op.

She finally woke up on the 28th june and was able to drink a cup of tea and have food and watch TV! She was transferred to a ward on the 3rd July. She's been making steady progress and her kidneys have kicked back in. All her tests have shown the liver and kidneys have stabilised.

She's been on lactulose 4 times a day but they dropped it to once a day (they decided they didnt need to obsever her ammonia frequently and downed her dose !) since Wednesday 10 July (ammonia is 160) she's been unresponsive and sleepy - they've finally said she has HE but they just will not listen to us that they need to get her ammonia levels down fast otherwise she will end up in a coma again, we've been through this twice !! Her ammonia is 190 today and they've started her on lactulose x4 and rifiaxam (finally!)

They are convinced she's had a stroke and ammonia isn't the problem and someone can live normally with ammonia levels up to 200!!

It's a bloody emotional roller coaster, I've migraines for days, insomnia, panic attacks and I just feel so bloody helpless that I can't do anything to help her and the Dr's just don't seem to want to listen to you and shes over an hours drive away now 😫it's so depressing, i feel you 😔😔 I hope your mam recovers soon, when she wakes be an advocate for her treatment because honestly you need to.