Cirrosis

[trish4798]

Hi I lost my mum last year age 57 to a variceal bleed has anybody else had to watch this heartbreaking illness take their mum too

[pear-shaped]

Dear Trish,

Firstly, huge condolences to you and your family.

  I lost my mum in mid 2005 due to huge variceal bleeds. I remember it like it happened today... She was never diagnosed with liver problems - was actually diagnosed with ENT disorder and heart trouble for which they put her on a number of beta blockers. 

I send you my heartfelt prayers and huge cyber hugs. 

I often post about my husband who has undergone a number of major ops related to liver disease. 

I am so sorry for your loss... Do keep posting here so that you have people to talk to... Also try and look after yourself - it is easier said than done, I know, please try...

Yours truly,

Pear 

[trish4798 in reply to pear-shaped]

Thank you so much I never knew this site was here until I contacted the liver disease trust which I'm hoping to fundraiser for 27th of this month will be a year I lost mum I wish you health and happiness and I'd love to stay in touch with you all on here please take care xx

[cazer in reply to trish4798]

Hi trish,cazer here...how have u been.....my memory is getting worse and worse couldnt remember husbands mobile....hes only had it about 15 years!

Did your mum struggle with trying to make people understand the fatigue.l went to a family do last night and my nephews wife and i were chatting about posture....and she said do pilates or yoga i tried to explain i couldnt..but she kept saying oh thats awful tell them you cant do things..but i tried to explain that you cant have a transplant because you feel ill or are too  exhausted to do pilates and i said just getting dressed is an achievement...on a rough day.but she said thats awful you  should have higher aspirations than that.sorry im moaning but you  will know what i meani im sure . She was so lacking in 'getting it' and i know i  shouldnt get annoyed but i came home pretty cross.the more i ttried to  explain the worse it got.....

How have you been since we last chatted.cazer.x

[trish4798 in reply to cazer]

Hi yeah very tired all the time napping im sure her friends thought she was lazy but far from it the illness made her so tired and run down it was so sad to watch when the slweping started getting more i knew it was getting worse and the forgetfullness was draining but i knew she cudnt help it towards the end my mum was a shell bless her heart this illness robbed her of everything ...myself im having a bad time really very low its a year the 27th that i lost mum so well you can guess xx ps ty for asking x

[cazer in reply to trish4798]

Glad to see someone else understands ...i think your mum would be very proud of you .you were obviously very understanding with her.i know my 4 children 26 24 20 and 17 love me but i dont think they realise how hard living with this can be...as you say  it does  affect everything ...they tend to joke about my memory and lack of doing stuff which is fine and i know its their way of  dealing with it but sometimes i find it a bit too near the mark.

Please dont punish yourself for your mums illness it was just one of lifes sh...y things that happens.you had no control over it and you could not have fixed it.im sure she would want you to not be so sad.....i know as a mum its my worst fear.

I know you cant fix how you feel but try to remember the good times you had before she was really ill.replace each bad memory with a good one.

You sound like a lovely person please remember  that you  did good by her and hold on to that.

Maybe you should   do something nice with a friend on the 27th...it might make the day slightly more  bearable?anyway just a thought.best wishes to you and thankyou for chatting.x cazer

[susieanna]

Not to that thank God; but to a massive totally unexpected heart attack; cirrhosis is such a horrendous disease. So young, your mum was; so sad when your mum dies; never really get over it/ somehow learn to manage; you have my deepest sympathy.  It is still very early days for you; wishing you well x

[trish4798 in reply to susieanna]

Thank you susie I wish you all the best xx

[trish4798 in reply to susieanna]

Thankyou and very sad and hope your ok x

[susieanna in reply to trish4798]

So you lost your mum on my birthday the 27th;  so sad all these stories are; my mum went on Boxing day 2 and half yrs ago almost now; Christmas has almost no meaning for me any more; but i was lucky she lived alot longer than yours; take support from people here and from your family/friends; hopefully it will help a little xx

[cazer]

Hi trish ...i am on the other end of this problem...i have end stage liver stage and also have varices ..i have had tjis from when i was pregnant  with our youngest son  who is now 16 .i have felt bad all this time that my kids eldest was 11 when i was first ill ....have to deal with the emotional fall out of this disease.i had to fight to get help from homehelps when they were little as i was so weak i could not even lift my prem baby of 4.6oz....

You are right it is a horrible disease....as noone can see how ill you feel or the impact  it has on family members.im sorry for your loss im sure if your mum was here she would say live life to the full as that has to be the best tribute  to a loved whos passed on.

I know i am not scared of dying for myself  but do worry about yhe fall out on my husband and kids if something happens to me.

I am borderline asessment for transplant but feel like lm in limbo at mo....

I send you all my love and hope you can learn to cope with the loss of your mum.cazer.x

[trish4798 in reply to cazer]

I hope you get your transplant and my mum was a beautiful strong lady she was 57 and had so much more life left to live it breaks my heart she went through this and all you lovely ppl that are going through it too x

[trish4798 in reply to cazer]

Mum had the varicies banded several times

[susieanna in reply to cazer]

I too hope you get your transplant; being in limbo must be very hard;  how awful; wishing you well x

[cazer in reply to susieanna]

Thankyou susienna .i still have to get asessed first then if they say yes i will go on list....as you say the limbo is awful.i know im bad enough for something to go wrong but  from their point of view only borderlime ill enough!!!!! Im wishing away the weeks between appts... but i know i shouldnt do that.best wishes cazer.x

[trish4798]

Thank you so much for your kind words if I had a magic wand I'd make you better in a flash my heart goes out to you and your family please stay in contact I'd love to chat more xx

[cazer in reply to trish4798]

Thanks for your kind comments.i am on betablockers   to lower the blood pressure in the liver but i am very aware of the risky life i am living.i am hoping to get onto the transplant list list before something drastic happens! They are assessing me every 3 months at present but hope i will soon b asessed as have deteriorating blood tests.x

[trish4798 in reply to cazer]

Mum had a mri scan often biopsy and was on beta blockers and mirtrazapine she hated taking them constantly sick trouble is if you have a bad liver you need to be fit and well for a transplant it's a catch 22 I hate this disease I so wish younger ppl who go out drinking would be educated more as they don't have a clue I do hope you get what is needed I still have nightmares about what I watched

[cazer in reply to trish4798]

Yes trish you are right about the alcohol but i just have to  let that go as it would eat you up but when i first got ill i was told that i may get a transplant om quality of life grounds but  there are now too few organs and that has gone out the window.i can only go with what will be will be as any other thoughts send me doolaly...i had a month after christmas after id been told i was borderline asessment but not quite ill enough that i thought i would go made but ive come to terms with it.

Im so sorry that you have been left traumatised by what you saw with your mum.did anyone ever offer some councilling        i would have thought you were entitled to some.

We were warned by the very first consultant we saw about the varices.....and not to wait around for an ambulance just for my husband to get me there as quickly as possible!!!!! That was 17 yrs ago so weve had a long time to used to it all.

Did your mum make it  onto transplant list? Or were her bloods not bad enough ?

[trish4798 in reply to cazer]

After her tipps procedure she picked up slightly confused but only lasted a couple days we thought fab its working sonthey came round to speak to her and explained they would get her better but she suffered a bleed liver failed etc 

[trish4798 in reply to trish4798]

I have had some but am looking into more 

[Catfishjumpin]

Its almost taken me out and eventually it is the most likely way I will go. We got to face what we have to face. Enjoy life. 

[trish4798 in reply to Catfishjumpin]

I admire you positive outlook but deep down you must be very worried I wish you all the best x

[Catfishjumpin in reply to trish4798]

Worry is useless. I must find the courage every second to know I must face what it waiting. I have 2 adult children, my last responsibility on earth is to show them by example how to face tough adversity. I simply do not want to die. It is true I fear HE. I do not want my children to see me like that dying. I know what bleeding to death is like but since it stopped finally, I also realize bleeding to death could be far harder than my first experience with it. I am a cyclist. Thats the most dangerous position I am in. Low Platelets means with a cycling accident, that would most likely end my life. I cycle anyway. Dying is the last thing we do. I respect that. I would like my mind to accept that and go in peace instead of worry and fear. 2 years ago bleeding to death alone, I first was afraid but quickly my mind said these could be your last thoughts, what do you want to think about if thats true. Then my mind settled into acceptance and filled with understanding how much I would be missed. I want my children happy, I do not want to go and leave them lingering in regret. I am Buddhist so most likely that is why I think as I do.  Thank you for your kind words. I am about to cycle which means I am forcing myself up and out this morning on the island and lead my mind into gratitude. But yes the truth lingers all around me. I am so ill, I cannot lead a normal life, no restaurants with friends and basically people do not want to hang out with the ill and dying nor the handi capped. So I became my best friend. 

[cazer in reply to Catfishjumpin]

Are you awaiting transplant?or what is your situation?.cazer.

[Catfishjumpin in reply to cazer]

I do not want a transplant but if I did, they would bump me to the top of the list now. I have liver cancer for 2 years, its encapsulated, not spreading, transplant would remove the cancer with the dying liver. I do not want the remainder of my life to be focused on getting a liver. I turn 65 this year. My platelets are shockingly low. Yes many get new livers and all goes well then others its the same old struggle if not harder. Its not a risk I want to take because I do not want more trouble, I am still living very well. No one believes how ill I am instead all on my island keep saying, you are the most fit person I know. If they called me in today with a new liver I would not want to stop my life and go for it. So in effect, its irresponsible to get on the list knowing I would back out if still strong. I watched my father die of liver cancer, untreated, it was hard for him but he was brave, he loved life, he was 80, he would have gone for a transplant. We are all different in what we want for ourselves. I just hope to keep myself going for years. Aloha

[cazer in reply to Catfishjumpin]

Good for you ....each has to do what is right for them.i wish you a fulfillingly rest of your life which it sounds like you will do.best wishes cazer

[susieanna in reply to Catfishjumpin]

Wow; being a Buddhist must really help you!  You have an amazing attitude and seem incredibly brave; keep enjoying your cycling; it seems to do you good despite the risks of falling. 

[trish4798 in reply to Catfishjumpin]

Your positivuty is amazing x

[Catfishjumpin in reply to trish4798]

Thank you, that means a lot to me but honestly sometimes I am flat out exhausted in bed for days, very depressed but I know its just my liver trying to store enough energy so I can get up and enjoy my life again. Best to you.

[Cathy71]

Hi Trish, I know exactly how you're feeling, I lost my amazing mum on the 12th of March this year. She never suffered a bleed but every other symptom of this horrendous disease. I'm still in the ' can't quite get my head around it bit' but I can totally relate to the nightmare thing, it horrible. I'm also having a real issue with the guilt part, I keep beating myself up thinking I could have done more even though I know I couldn't. I literally spent every waking moment with her for the last six months ( we only found out the extent of her illness then) she was 67 and was taken too soon like your mum.  Has a year made it any easier to face? I'm guessing the nightmares are still haunting you?  people keep saying ' your mum wouldn't want you to be sad' ????  That doesn't help when really all I want is to talk about brilliant she was not just sweep it under the carpet!  My heart REALLY goes out to you ❤️❤️❤️

[trish4798 in reply to Cathy71]

Private message me and il give you my number x

[Catfishjumpin in reply to Cathy71]

You were an angel. I so wish I had children to be that open and loving, yes they love me but nope they do nothing to help me. I never get a card, a gift, rarely a phone call. They do not live on my island but still a mother wants the devotion you offered in her last days. Never forget that. You were the angel at her side when she had to go. You are lovely.

[susieanna in reply to Catfishjumpin]

My God; how awful and sad.

[trish4798]

Hi I can honestly say no as I think about it all the time I can't accept she's gone and I never will would you like my number we can talk and help each other if you like as I know what ya feeling x

[trish4798]

I stayed by her side 24/7  I dressed her in funeral home and I put her to rest in with her husband myself it was the hardest thing I ever done but she was my rock and been there for me all my life so it was my time to repay how I miss her so much it actually hurts I just want to cuddle her one last time and tell her how much I loved her and her see how beautiful her grandson is it breaks my heart knowing I haven't heard her voice in 12 months I honestly can not bare this pain 😣

[susieanna in reply to trish4798]

How terrible for you; this has only just happened; take things a day at a time; best wishes x

[angse]

Trish I am so sorry for what happened to your mum, I had a massive bleed 3 years ago remember none of it, I know I was extremely lucky but as pear says look after yourself you really need to. Annette

[trish4798 in reply to angse]

So hard when you see others that have come through which is fab may I add but it's so upsetting to think my poor mum was the unlucky one thank you for your kind words x