I’ve been a ‘lurker’ here on the forum, writing very few posts but very much learning about liver disease, it’s complications and it’s effects on the patient, but also on those who care.
I wanted to thank both the British Liver Trust for a fantastic resource of information on the liver and it’s complications and it’s truly amazing, kind and supportive helpline as well as to those who contribute on here either by asking a question, answering a question or just offering kind words. I was at the end back in November, didn’t know where to turn but the folk in this forum helped me immensely in coming to terms with the disease, understanding it and also how to cope looking after someone suffering from it. My mam called it sh*tty death. How true.
Mam was diagnosed in October 2021 with portal vein thrombosis initially after a CT scan following her blowing up like a balloon (turned out to be ascites). That was followed by GI bleeding, a diagnosis of non alcoholic liver cirrhosis, hepatic encephalopathy, more ascites, AKI, problems with the spleen and kidneys, nearly killed by fluid overload from the hospital (twice🙄) and the cycle continued until end of January, where in the space of two days advised she was going for a TIPPS procedure then she wasn’t, then she may be eligible for transplant then she wasn’t followed by “there’s nothing we can do your going to die. Where do you want that to be, home or Hospice”. I’d like to say the bluntness of that phrase was from me, but that’s what the consultant actually said.
She came home end of life last day or so of January and died 19th March at home.
I don’t think I’d have managed these last few months without the wonderful advice I received so to you all, thank you so much. 🙏🙏
Written by
Murfee
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So sorry to hear of your mum passing away and how difficult the end was for you. I hope you can take some solace in the happy memories of your time together and the person she was before her illness. Thinking of you at this time
So very sorry to read you lost your Mum. She is at least free from the pain and torment of this awful disease but that doesn't ever take away the void that is left after losing your Mum . Gain strength from the memories you have of better times with her and don't dwell on the worst but you can use everything you've descovered about the illness which took her, to help others on here should you wish.Thoughts are with you.
That's so sad, like others have said, your mum is no longer in all that pain. It scares me how blunt some of the medical staff are, that includes the transplant co -ordinators. So sorry for your loss x
What can I say but so sorry for the awful ending not only that your mum went through but also you went through, like AyrshireK has said remember the good times. My thoughts are with you 💕.Stay Safe All
So sorry to hear of the loss of your mum. .watching someone pass away is not nice😪 just hope you can cherish the memories and the good times you both had together ❤
I am so sorry for your loss and hope that your Mum's memory will be a blessing to you and all that loved her. I also wanted to echo your thoughts on what a wonderful service the people on this forum and the help line perform. Thank you all X
I’m so sorry for your loss. My thoughts are with you. I know there are a few lurkers, like us, who gain comfort from behind the scenes. I hope you continue to get the support you need to help you through this time.
I’m so very sorry for the loss of your mom. Losing a parent is so difficult. I lost my mom when I was 17 years old. I’m now 65. Still miss her every day. Just know that your mom will always be with you. She is in your heart, she is in your memories, and she is watching over you. Always!!!Lorrainelouise
My Mum died last July and I’m just coming round to the anniversary of her becoming very jaundiced, swelling with Ascites and going downhill fast. Her version of “shitty death” was “this awful” - it was. But we’re both obviously strong women who managed to care for our Mums at home and we will get through these waves of grief. I met amazing people along the way and for every insensitive person there were three who were deeply caring and supportive. You see the best and worst of humanity in the toughest situations. Mums death gave me a different perspective on life. It’s too short and you should spend it doing things that are worthwhile or give you pleasure. So yesterday I retired at the age of 54 so that I can spend my energy on things I enjoy. I’ve got the same liver disease as Mum so I know what lies ahead and I’m gonna have fun before I get there. Hang in there Murfreesboro your not alone - I’m so sorry for your loss.
Rather than concern yourself with blood numbers (that's for the doctors to worry about) for Mum and knowing where she is at then it's her symptoms that are important. If as you think, her diagnosis is that of cirrhosis (based on the limited information on your profile) then a good place to start for information on cirrhosis is the British Liver Trust page at:- britishlivertrust.org.uk/in... (It was certainly my first port of call after my then fiance/now hubby was hospitalized with decompensated liver disease back in April 2012).
I’ve read it all a million times over, the numbers would give a better indication of how she really is. I wouldn’t really say that’s just for the doctors to worry about, as I’m worried too.
Unless you are qualified to interpret blood results then they arn't going to help you or mum monitor her condition - yes you can potentially calculate things like UKELD/MELD score but even then it just gives you more to worry about.
My hubby has had a cirrhosis diagnosis for 10 years now and in all that time we've seen one print out of bloods.
It's more important to know what symptoms to look out for and to monitor. Doctors will be the ones to take action on blood results but you and mum need to monitor for signs and symptoms of deterioration or indeed improvement. If mum will allow it then attending clinic appointments with her will help you to see what is being discussed as to results etc.
My hubby nearly died of a massive variceal bleed in 2012 - was listed for t/p in 2014 and delisted 10 months later as his condition stabilized - so we've gone the full gambit with this condition. He's back at the watch and wait stage - t/p may be necessary in the future but maybe not.
Tomorrow we are setting out on a month long caravanning, cycling and walking holiday in the Highlands of Scotland. We don't know what his current bloods look like we just know he's feeling 'up for it' and we are going to enjoy every good day of our lives without fretting what bloods are up to - it's the symptoms that really matter & I keep a quiet eye on those and report back to doctors as required.
Bless you 🙏 🕯♥ I'm so sorry and sending much love with caring virtual gentle hugs 🌟🤗🌟
Please don't see yourself as a "lurker" you have done a really brave thing and and please know that the replies are genuine, sympathetic, empathic. Others can read the sadness and know how you feel and what you are going through.
The forum is a great place to juggle thoughts, emotions and comparisons and advice, help is of abundance.
Your mam is in peace, she is out of pain and she will always be with you in your heart, looking down through one of the stars (which I like to think of as a window - for the souls at peace to check in on us).
I mean this in the kindest way and you must look after YOU too now, very important ~ seek help if needed, talk and keep talking.
Her journey has been cruel, yet even if it has given insight for others, then that in itself is beautiful 🌈🌟🌠
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