ISOLATED: My husband was diagnosed with... - British Liver Trust

British Liver Trust

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ISOLATED

Peeps7 profile image
7 Replies

My husband was diagnosed with AIH and cirrohsis January 2014 and is now an incredibly youthful, fit to fight 80 year old. He has had a very large portal vein thrombosis for the past two years, encephalitis and Ascites is a major problem, he now has an umbilical hernia. He has reached end stage liver disease and is under the care of our local Hospice where he spends a couple of days a week in their Man Shed. He still drives himself there and of course he sleeps so much during the day, not much at night. Before his illness we travelled all over and have a small cottage in the States but obviously our lives have changed dramatically and mine is on hold. We have made wonderful memories together and I wouldn’t change anything but is there anyone else out there caring, living with this time bomb and feeling so isolated?

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Peeps7 profile image
Peeps7
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7 Replies
Lilyrosemarie profile image
Lilyrosemarie

Oh Peeps, your post made me cry as I am going through this too. My beloved partner is in the final stages of liver and kidney disease and its heartbreaking to see. We dont know how many days we have left with him and unfortunately the palliative team have dosed him up and hes not really with us. As long as hes not in pain it would be lovely if we could actually talk to him but if he can hear he cant answer. I feel like I want to curl up on the hospital floor and stay there with him.

Peeps7 profile image
Peeps7 in reply to Lilyrosemarie

Dear Lily, my heart goes out to you, and I too was in tears when I read your post. We are obviously quite a few months behind you but what you are living through and have to contend with, must be pure agony. We all know the inevitability of this horrific disease but it is so ruthless and undignified. I hope and pray for you that you can maintain your strength and you have family around you to support you. So thinking of you, love Anne x

Lilyrosemarie profile image
Lilyrosemarie in reply to Peeps7

Thanks Peeps.

Peeps7 profile image
Peeps7 in reply to Lilyrosemarie

Try and stay strong x

4pjx__ profile image
4pjx__

I was very sorry to see this sad story about your beautiful husband. I will carry you in my heart and prayers.

Best wishes,

Pam

Peeps7 profile image
Peeps7 in reply to 4pjx__

Thank you Pam so much for your kind words, just to know that there are people out there that care really helps, Anne x

L444 profile image
L444

Yes these problems do make you feel helpless and isolated it’s hard to stay active when you feel sick you must have done a lot of care taking so perhaps it’s your time to do something for yourself do something nice for yourself

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