Thankyou .: Hi i just want to say... - British Liver Trust

British Liver Trust

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Thankyou .

13 Replies

Hi i just want to say , Thank you..You have all been so helpful in helping me understand this terrible sickness and i want to thankyou all for being such gems..This truly is a brilliant site with many uplifting caring and encourgeing people.

13 Replies
cazer profile image
cazer

Lyn you are great to take time to thank the people on the site...im not including myself in recieving praise as i know i get carried away with my advice and get too blunt but im so glad you find the site helpful

I have a form of autoimmune liver disease where the antibodies attack and damage the liver.ive had major symptoms for 17 yrs and have found this site a real help myself.im now at cirrhosis stage and borderline for asessment for transplant listing.

It is very good to read carers posts as it reminds me what its like for the person on the other side .its such a wierd disease un seen until a person is really poorly.even then hep encepathlopathy can be hidden

How is your hubby today ?i suppoae weekend are worse

Love the picture.

Best wishes cazer. X.

in reply to cazer

Awe ty cazer,, what a lovely message, i am so greatful for this site..I hope that you get a transplant soon.Yeah it is hard from the outside especially when the person is distructive,Hubby was sick yesterday (fri)got up at 5 pm, He was horrible to me all day and we went to bed at half 2 in the morning with him being so drunk he fell over and he kept waking me up coming out with very hurtful things. Not sure how he is going to be today but im getting to the stage where i am going from being in love with him to just loving him and that scares me. Im getting a gutt feeling that its not going to be long before he does pass wether its because he is coming out with such horrible things but also the fact that he was saying some weired things that made no sense to me, he is also talking about getting in contact with old flames which hurts alot. Im not sure if he is saying the things he is saying because he is scared or because he thinks he isnt going to be here much longer or if its the alcohol ..Anyway we will see.I was looking at him last night and thought my god you cant get any skinnier, he had tried to eat the last three days just a piece of bread/small amount of potatoe but last night he didnt eat at all.Thankyou for asking,

briccolone profile image
briccolone in reply to

Afraid that's quite typical for the illness... the livers shot. And toxicity affecting the thought patterns

in reply to briccolone

ty bricco, appreciate your answer..

cazer profile image
cazer in reply to

The toxinbuild up affects your brain...i get so forgetful...cant remember what something simple is called e.g door!

Also i can go from fine to angry in a few mins...its like i have no filter !!! On what i say.then my other half gets angry back and we have a row!! Over nothing.

It might b worth you googling hepatic encephalopathy as im not making excuses for him but it might make a bit more sense why hes acting way he is.

Also if he cant eat i think you could ring docs and ask them to see him..at home.

If hes that bad now he will prob be unaware of what hes really doing!

Even if yoi just speak to docs for advice i tjink you need some support for you.i dont see how you can deal with this all alone and as you say his parents are elderly.

Is there a friend who would stay.?

We had terrible trouble getting any help with our children. i was ill whilst pregnant with fourth child and i was so weak i couldnt even hold our little baby for long.because i looked fine social services didnt see my need for help although i could hardly dress myself...eventually we did get help ...but speak to doc even your own one to see if theres any help then can give u.he may need to go into hospital if he cant eat !

Surgary carbs help my nausea e.g.custard creams...not healthy but do help with horrible sicky feeling.

I suppose its difficult to distinguish between liver symptoms and after effects of drink....you could do with some better advice from those in the know.

What about asking the liver trust for advice on if any practical help is available.maybe worth a try.my heart goes out to you best wishes cazer.xx

in reply to cazer

Yeah its not easy especially, i do get frustreated with him when he will ask me the same question over and over , i have to try and be more patient with him in that area. We went to see his parents yesterday and most of the time we were there they went on and on at him, even threatened to not take us home until he had eaten a boiled egg, he just flipped and we went home,I have googled the one you mentioned ty for that it all made sense.:).Hubby wont allow anyone to stay here, i do manage to get a break when he is sleeping in the day because he usually sleeps until 1 pm so thats good. I have been given leaflets by my nurse to contact someone regarding getting the support and help which i will be doing tommorow morning.

Thanyou cazer for your help.:). Hope that you are ok.

cazer profile image
cazer in reply to

So glad youve manage to see the nurse...hope they give some useful advice...as i say what i say is a bit hit and miss.

Glad h.encep makes a bit of sense.i genuinely think hes prob not trying to hurt but is lashing out at the only one there also im sure he doesnt really know what hes saying.

I have to say i couldnt eat an egg at the mo if u paid me so im not surprised he lost it.

When ive been at my worst my other half would ask me what i wanted to eat..then hed make it only to find i couldnt face eating it.sometimes simple things are best just a jam samdwich or toast.

There are protein drinks you can have from docs which may help his energy a little although it may not be able to stomach them.

Just remember even if hes not eating you need food so eat well yourself if you can.

I hope you can find the strength to carry on doing what you are doing.

Love cazer.xx

cazer profile image
cazer in reply to cazer

Sorry about spellings.!!

in reply to cazer

Ty cazer.. He lost it not because of the mention of egg but his mum and dad had been going on at him for over an hour and then she tried to black mail him with the egg..i made him toast in the night and he ate that, not sure how is going to be today as he is still sleeping, The doctor wont give him protien drinks as the dr says that it only irritates the stomach and causes him to be sick, he is on water tablets which the dr didnt want to give him because its another tablet his liver has to process but its helped alot with the swelling the legs and feet are still painfull to walk on but at least the swelling has gone down.

Oh i eat too much sometimes, because im comfort eating at the moment..Thankyou i hope i can continue with the strength i got.

How you doing?

cazer profile image
cazer in reply to

Ha ha woops got that a bit wrong...

Surprised about protein drinks as dietician at queen elizabeths liver unit suggested them and ive stomach ulcers!

I comfort eat too except when nausea kicks in but then the wrong stuff tastes better !!!!

Does he see liver specialist ...not sure if diurectics good for us.....???

Im not too bad ta.bit rough last 2 days as have a sore throat and feel the cold terribly...another symptom ..bad throat on top of all other stuff not good but just have to carry on . No one can really do anything so i just try to distract myself from itch etc.

Think im starting to gain fluid but may go to docs.x cazer

in reply to cazer

No he doesnt see a liver specialist, he has to go back to his drs in couple of weeks, im not sure why they havent sent him to a liver specialist the last time we were at the drs it was as if he had gone to see them about a headache..He said to him eat more and drink less and come back in a few weeks time.

Awe hope your feeling better real soon.Did you go back to the docs after?

Nhaamor51 profile image
Nhaamor51

Lyn66,

I am so glad you have found this great place where you can come and poor out your fears. It truly is amazing how everyone here spends their time uplifting and researching to give support to complete strangers.

From all you have going on you also are truly amazing and very brave. Your husband is very lucky to have someone that is so dedicated to him in such differcult circumstances. Many people would have cut their losses and moved on. I'm praying that something will open his eyes and make him realize that he is killing himself. I'm also praying that you are able to find time to take care of yourself. I know that is the last thing on a caregivers mind because there is so much that you are responsible for.

Love, love, love that picture. It is great! So true. Please take care of yourself.

in reply to Nhaamor51

Hi Nhaamor. Thankyou its not easy but when i was growing up i was always taught to have respect and take care of your husband, Its not always been this hard but i guess because he is getting sicker it will get hard and believe me i have come very close to walking out the door and disappearing but i couldnt for many reasons.

Yeah the picture is lovely isnt it? I choose that one because in situations like these its feels like your drowning and then along comes someone to stop you from drowning. This group reminds me of us all on a massive raft in the middle of the ocean all rowing in the same direction.:)..

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