Chirrhosis

[bluemoon2]

Did I forget on purpose to take me water tabs,guilty as charged and so I pay the penalty lying in bed here with two feet like water melons,I certainly got what for of my wife,opp's.

[AyrshireK]

You must take your prescribed meds bluemoon2, if you end up presenting at hospital with symptoms relating to non-compliance with medication you could end up in a whole heap of bother. You are on the transplant list arn't you? Do you know they can actually delist you for non-compliance with medication / medical regime. You'll be taking a whole heap of meds post transplant which will also in some cases have negative effects and transplant teams will question whether or not you'll be compliant with those, any doubt and they can delist.

I know your diuretics cause issues, my hubby fortunately hasn't needed to start taking them 'yet' (subject to a fluid limit) but is on lactulose for HE symptoms and my goodness his toilet need is something else - sudden, without warning and often when there are zero facilities to hand - accidents yes, requiring to go in woods, hedgebacks, on the beach etc. etc. Not good at all and it's debilitating and he'd rather stay home than take the risk of accident whilst out and about.

Take care of yourself, Katie

[bluemoon2 in reply to AyrshireK]

Thanks point taken,was on transplant list taken off as became stable,as for lactose did not take me long to stop that awful stuff and I told docs, give me the encepalopathy any day,mine is mild so not to bad,feel for your hubby its horrendous.

[Hidden in reply to bluemoon2]

I really feel for your husband, Katie. I've been in that position many a time, it's horrendous and very embarrassing. How are you and your hubby at the moment? Love and hugs to everyone Lynne xxxx

[Thistle09]

When are you going to learn, bluemoon2? You deserve what you got. I have no pity.

[Thistle09]

There is no such thing as a MILD case of encephalopathy. Your power of reasoning is already slipping away. Try taking senna (an herb) in pill form; there's also a senna tea, which has a mildly sweet licorice taste. Prune juice will also clear you out quickly. ANYTHING THAT WORKS. I will also have no pity if you end up with brain damage or in a coma. HE is nothing to play with.

[AyrshireK in reply to Thistle09]

Thistle09, you are incorrect in saying you cannot have mild hepatic encephalopathy - in the US it is recognised as a 5 stage condition with mild encephalopathy being stage 1 and moderate encephalopathy being stage 2. he123.liverfoundation.org/d...

My husband is diagnosed with and treated for mild to moderate hepatic encephalopathy with both Lactulose and Rifaximin. His symptoms are present on those considered mild symptoms of HE on the British Liver Trust website which shows Mild & Severe HE as two distinct presentations of the condition. Thankfully he has never experienced an acute episode or any of the more severe symptoms. britishlivertrust.org.uk/li...

As for saying someone deserves all that they've got, calling them a fool and saying you have no pity for them that's not really in the spirit of support on this forum. Who are any of us to judge? We can point to errors and possible consequences but use of word 'deserve' and name calling doesn't help anyone and we don't want our forum descending into that sort of place - it is always supportive and non-judgemental.

Katie

[bluemoon2 in reply to AyrshireK]

Thanks for speaking up for us Ayrshirek,think I'll give it a rest on here for a while thistle has left a bad taste in my mouth.

[AyrshireK in reply to bluemoon2]

You've been getting good support and advise on here, don't let one person remove that from you. If you need us, we're here.

Katie x

[Millie09 in reply to bluemoon2]

Totally agree with all that Katie mentioned, so.. you didn't take your water tables. Well now you know what happens when you don't, i have mild encephalopathy myself and taking lactulose that has been increased now by my GP, omg do i know it! BUT it was needed, can't stand taking it .but we have to to keep us as healthy as we can... don't give up ... linda x

[bluemoon2]

True all, like bluemoon,you saw me standing alone,people on here have been great one of the less talked about is how cirrhosis can get you down mentally,i have good days but the bad days are real bad funny how that grey matter works or what we have left.nt all.

[AyrshireK in reply to bluemoon2]

I see the mood / mental issue regularly with hubby. He has good spells but then a hill he'd love to climb or something he'd love to do comes into focus and no it's out of reach now. He often dwells on life pre illness days and has lots of regrets about the limitations his illness brings.

When he first went to liver transplant unit we said about his low mood and he was seen by a mental health doctor on the team who within minutes diagnosed hubby with 'adjustment depression' - having gone from a super fit long distance walker, working hard in heavy engineering as a welder, long shifts but independent and not too badly off financially to literally overnight a diagnosis of end stage liver disease with life threatening symptoms. He'd just met me and we were planning our new future together then wham an illness that stops him working, robbed him of his independence, dependency on benefits & the stress and anxiety that brings, hundreds of appointments, inability to plan ahead due to literally not knowing what level of energy you'll have each day, zero libido (can't even share a room with his new love - however we did marry a few months after his diagnosis). It's been a real kick in the you know whats!!!

He would do anything to get his life back but we just have to try and make the most of the good days, if he has energy or a bit of enthusiasm we 'seize the day'. Ok he might pay for it later when he's spent all his energy but at least he did something and hasn't laid down to the illness.

Keep living life to the full as much as symptoms allow, it's amazing the positivity you get from doing something - a walk in the countryside, a change of scenery. We arn't long back from a caravan holiday where we actually did quite a lot of site seeing and walking and hubby was so positive about it we've just started planning and booking up our next getaway.

Wishing you all the best, Katie xx

[bluemoon2]

What you have said is so true and it seems you have been a great support for him,we are very lucky,I have actually said to my wife if she wanted to leave me I would understand,I am not the man she met and basically ruined her life I know,so when she goes at me with both barrels I agree,she goes at me big syle,can I blame her.i am lucky she still loves me.Before I go I have to say that I spend alot of time reflecting on the passed regretting things I can not do now I was in the Navy then fire fighter,all the best to your hubby tell him he's not alone.x

[bluemoon2]

Hi k,back on again, our annual tea,lunch put on by the hospital as appreciation to be seen,poked and prodded by trainee doctors went well,they are looking into doing role playing in future would we be interested,we all said yes so that could be fun,still abit of life in me yet,dont think I'll be up for an oscar though,say hello to your hubby.x

[AyrshireK in reply to bluemoon2]

We joked that hubby would be invited to staff Christmas dinner he used to be there that often. We were at consultation on Monday - we reported current situation, no comment from doc other than doing a lot better than years ago. Bloods taken and off we went. Back in tomorrow for endoscopy then home Friday.

[bluemoon2 in reply to AyrshireK]

Hopefully as your husbands liver becomes stable it will be less trips to hospital,you kind of get fed up of it all even though you know it's for your benefit, hopefully next 6 month appointment will be last on to yearly after that,still 6 month scan and bloods,best of luck to you both.