Hi everyone, it's been a while since I last posted as things have been a bit rough. My Mum sadly passed away last Saturday after a 6 month battle with decompensated liver. 67 is no age to go, and as everyone said it was indeed a roller coaster experience but she was at no point in any pain . HE was the biggest obstacle for us as it prevented me and my girls having any normal conversation with her and doing things she loved to do . I wish every single one of you all the best for the future and to all the carers out there , I take my hat off to you!
This site was a god send and helped me no end! After my first post you all advised me to go and get answers, which I did but unfortunately it was too late!
If I could share any advice I would say, it makes a massive difference to which hospital you have access! Even if you have to travel a little , do some research and seek out the good ones because it's like banging your head against a brick wall other wise .
Stay healthy and thank you πππ
Written by
Cathy71
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Thank you, I will. She was an incredible lady who touched many people and I'm so proud of her . This problem effect so many people I just wish people knew more xxxx
Hi Cathy, so very, very sorry to hear that your dear mum has passed away with this dreadful illness. You did your utmost best and sadly the medical profession have let your mum down.
Like you say and I echo it people must push for the appropriate care for your loved ones because some hospitals seem reluctant or downright unknowledgeable about when is the right time to send someone to a transplant unit for assessment or merely to 'touch base' in case their health deteriorates. As you and I know from previous posts your mum should have been properly advised and properly assessed way sooner but sadly all the what ifs in the world won't now bring your mum back and I am really saddened that you all had to go through this.
Sending you cyber hugs and hope you and your family can go on and live the happy lives that your mum would have wished for you all.
Dear Cathy, I am so sorry to hear of your sad loss.
I went back to read your original post as your name 'rang a bell' - and I read about the struggle and heartache and saw what a supportive caring daughter you had been for your Mum.
By the way, there are always more questions than answers and "liver disease is a cruel and mean and sneaky disease" ( someone on here used those words to describe it and they are very fitting) creating havoc in the liver with few outward visible signs until it IS often (but not always) too late.
It IS possible that your Mum had made the choice to simply carry on as normal ( and not tell you everytrhing the consultant might have told her previously) so as not to worry you and lead a 'quality life' rather than a 'quantity life' ( if that makes sense)
You have had a rotten struggle, and having lost my Mum only a year ago (not liver), I really feel for you.
Take it day by day and do message me if you want to.
Sending love
Lucy
Oh Cathy, that's some sad for you all, it must have been so difficult for everyone to see the person you love slip away.
HE was truly horrible as many of us here can testify to. I had it bad on 3 occasions but although I was not thinking or acting rationally, the main feeling that I remember wasn't fear or anything negative, just that I felt well loved, although I may not have shown my appreciation at the time.
I can't compare different hospitals but Birmingham QE is fantastic.
Thank you all , I'm off to arrange a kick ass funeral now to try and capture the fun loving ladie she was . It's going to be packed to the rafters that's for sure xxxx
My sympathies Cathy....Tanx for being strong. As Mum will luv to see you lead that happy life. Go n arrange that funeral girl...Mama is waiting to hear goodbye. Lots of luv
I'm so sorry to hear about your Mum. Although I didn't know her, I felt very sad when I read your post as I know how you must be feeling.
I'm new to the site (I only wish I'd found it sooner) and so haven't read your earlier posts but it sounds as if we have a lot in common. My brother died at the beginning of November, after a horrendous time in hospital when, amongst other mistakes, Hepatic Encephalopathy was misdiagnosed as a massive brain stem stroke!
I agree with what you say about hospitals. The one where my brother was treated doesn't have a hepatologist and, unfortunately, we trusted his consultant and so didn't try to get him referred somewhere else. Unfortunately, like you, by the time I did start to question my brother's treatment, it was already too late.
I know that, like I was, you'll be full of regrets at the moment, but remember that you did your best for your Mum and that, if anyone let her down, it was her doctors.
Look after yourself and, if you'd like someone to talk to, please don't hesitate to contact me.
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