HE and how long it lasts for.

[Twinklu]

Hi all,

From my previous posts not many I must admit I explained that I was diagnosed with established/irreversible decompensated cirrhosis of the liver, portal hypertension, varicoses, ascities and HE, last year caused through nafld and uncontrolled type 2 diabetes.

I'm on lactose and rifaximin for the HE.

Apart from constant blood tests (over 60 separate ones in the last 12 months) as my bloods are always high or low so have to keep going back to Dr's to have repeats done I've not really been that poorly.

I have several problems relating to the HE that do not seem to be improving at all even though I am on the lactose and rifaximin for it.

This last 7-10 days I have not been out of bed I feel so ill, I've missed my grandsons 1st birthday and his party, my nephews 30th birthday and have not been to see my mum at all (mum has dementia and is in a care home).

I usually feel quite dizzy/light headed with the HE but this last week/10 days I have been dizzy 24 7 and have got horrendous stomach cramps and am either sweating or totally freezing, never quite getting to middle ground with my temperature.

Dragged myself with the help of my hubby to our Dr on Friday as I have never felt so bad and she prescribed buscopan and meds to help me sleep, as you can see from the time (1:55am) their not working amazingly well, Dr was quite concerned with me as a whole as I'm usually quite upbeat about things and bounce dry sense of humour quips with the hubby, I went in and literally just cried at how much pain I was in and how dizzy I was, I had to have my hubby link arms with me as I'm just so unsteady at the moment.

Dr hasn't let me go back to work since early last year and when I ask about going back she just looks at me and says no chance.

I can't believe every person with my problems is not allowed to work and imagine it is due to not being able to getting the HE under control.

At the moment I get dizzy/ light headed just turning over in bed and low and behold if I want to walk a few steps anywhere, I feel like there is no gravity and I'm all over the place trying to follow where my head is going.

How long does HE last for and will it go or stay around until I have a transplant as I'm not sure how long I can take the symptoms of it for much longer.

Doesn't look like I'm looking at a transplant any time soon as the gastrologist has me down as a 7 using the child push method ( I think that is what it is called) and Leeds has me down as 9 using the meld method.

Any advice would be greatly appreciated, thanks in advance xx

[Hidden]

Hi,

It may be a good idea to request an appointment with your consultant so you can discuss your HE and management of it?

If you would like a supportive chat, our nurse led helpline is open Mon to Fri 10am to 3pm on 0800 652 7330

[Twinklu in reply to Hidden]

Thanks sweets, I'm back at Leeds next month so will have a chat with them then but if its too long to wait I'll give your nurses a ring, I'm just conscious that they are so busy so don't want to disturb them xx

[Hidden in reply to Twinklu]

That is our job, please feel free to call us if you need to

[Twinklu in reply to Hidden]

I will do, thank you xx

[chugalong]

Hi, I suffered with HE as well. One of the big things I was told was lots of just water to keep hydrated and helps flush the toxins out. I am about 6yrs post transplant now,

[Zukosmile07 in reply to chugalong]

Hello chugalong..... How are you feeling to date. I had my transplant 3 months ago and I have a couple of issues, other than that I feel great 😀.

[kensimmons]

All I can tell you is what I know about one man who was in the hospital by coincidence with me for the one day I was there (nothing liver related for me, I simply had a terrible leg sprain, I was fine, I honestly don't even know why I was put in, must have feared something worse!).

Anyway, this man said to me;

"Brother, I had HE really bad. Really really bad. I thought the walls were melting, I spoke to people who were not there, was aggressive with the staff, and then they gave me the lactulose and for several weeks I was just on the toilet almost all day. But guess what? It took a while, but it all went away and doctors say I will have nothing permanent, it just took time".

That is what I was told by a very affable fellow. I have reason not to believe him, Just be patient and take the medicines, don't even miss one dose! Unless you are a one-in-a-hundred exception you will get better.

Congratulations on the low Child Pugh and MELD scores, you will be around a while even without a transplant! It's good news!