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carllovatt profile image
14 Replies

i'm feeling a bit vacant, at home now from visiting the mrs in hospital. the consultant said that the mrs is not doing as well as she should and that she would not survive a transplant. or any other type of surgery. so with no transplant to work to. feeling like what's the point .. looking at end stage end stage now the consultant has prescribed enamas evey other day, to break this cycle of hepatic encephalopathy

there is just so much she can't do now or it will be terminal.. either way i think i will be alone at christmas

thanks for all your help

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carllovatt profile image
carllovatt
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14 Replies
jojokarak profile image
jojokarak

Hiya hunni seriously don't give up hope, plenty of times my husband and family got told I wouldn't survive surgery due to H.E or ascites or kidney problems and then my blood's were wrong and I needed long hospital stays for them to get me stable again.. .

It really is a day at a time liver disease she may be bad for today or tomorrow but you don't know how she will be in a week or a months time. Hang in there x

carllovatt profile image
carllovatt in reply tojojokarak

big thank you jojo. I do know this. as we all do it's just seeing it all with a bit more clarity than i would like! and it's scarey. one day at a time is a good philosophy, it's just when you are told all day will be like this, then you start thinking about quality versus quantity and what is best?

I'm just scared but i do know i will ok

jojokarak profile image
jojokarak in reply tocarllovatt

All you can do with anyone with a serious illness take one day at a time, never know what each day will be like. I understand your scared it took me getting better to realise the pressures my husband and family had in caring for me, at my worst times I was in such a world of my own but I didn't realise how ill I was which I think is a good thing. It was only after transplant they told me they didn't think I was going to live, but never underestimate someone who is fighting every day that includes the patient and the doctors and nurses. You just need a bit of respite recharge your batteries x. But glad to hear your feeling better

carllovatt profile image
carllovatt in reply tojojokarak

Thanks Jojo you do help. But the fact s don't change but I have lots of lemonade

fizzix50 profile image
fizzix50

The facts may not change - all you change is your response to them. I know how hard it is, but one thing I have learned (caring for OH), is I get strength from being caring and supportive, no matter how tough that is. Just before a recent hospital admission I was snappy and grumpy because I was so tired and stressed. But when he later collapsed all I could think of was the last things I had said and the way in which I said them, and that caused me no end of pain. So now I try to be as kind as I can. Not always easy, and trust me, I am certainly no saint, but I want to feel I was the best person I could be for him. xx

carllovatt profile image
carllovatt

I know you are right. it's that feeling of helplessness I know we all have it and you can only do so much housework before it becomes obsessive

Geffy22 profile image
Geffy22

Hi carllovatt you need to give yourself time - you are grieving already.

Gather firends family around so you can get help or respite time etc even if someone picks bread and milk up for you its one less job for you.

The liver has an amzing ability to regenerate as Jojo says, so whilst today isnt great, theres always hope that tomorrow will be better.

Sending hugs x

carllovatt profile image
carllovatt

I'm aware I was grieving too early for my own good

I'm happier now I am with her on ward with her and she is still OK thanks everybody

carllovatt profile image
carllovatt

thanks to all the 'liverbuddys' out there,

I saw her today at hospital and suddenly felt lifted up, you all know,what i mean

im home now and feeling happier,brighter ,and much more relaxed than yesterday

the 'dark pit' is still there but I AM looking elsewhere thank you all 'liverbuddys'

jojokarak profile image
jojokarak in reply tocarllovatt

So glad to hear this x. Onwards and upwards

carllovatt profile image
carllovatt in reply tojojokarak

Thanks Jojo

pip-lit profile image
pip-lit

I'm so sorry. But the others here are right, don't give up. My husband has been so very ill, then got better against the odds...it feels like a cat and mouse game...hope you have friends and family to turn to for some support. It feels so lonely, though, I know. Thinking of you and with you in spirit xxx

carllovatt profile image
carllovatt

Thanks pip I'm not one to give up, it was all just getting to much.. but yeah up and down on the hepatic rollercoaster

GrandmaDylan profile image
GrandmaDylan

I'm at the beginning of my life with cirrhosis and still trying to find out what caused it, how to treat it etc. I feel guilty that my children 32, 29 and 28 are worryingly about me. My daughter's are both scientists and know too much and my son is on holiday in Italy but keeps messaging me to ask how I am and when my appointments are. I wasn't going to tell him before his holiday but his sister's insisted that I did. My husband just looks bewildered as the diagnosis came out of the blue.

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