I have had NAFLD since 2013, then the changed it to NASH and since this summer it is now end stage decompensated Cirrhosis . I asked the Dr about time left she told me some people at my stage would have already passed and some linger .I am 63 and have a severe pain syndrome called CRPS. Life has become days of sleeping up to 22 hours sometimes or not for 3 days. Being confused with HE. And the bathroom and the lovely lactolose ....... And lets not forget the itching. You have all been there.
I recently told my ex husband in Israel what's going on, since its getting so much worse. Its so hard to share with someone who has no idea , but we share my only child and it had to be done.
Because of my unbearable pain and my dying liver, and my age.I have decided on no transplant. My daughter has so much pain realizing and being my caregiver. I raised her alone so it's always been the two of us. She is such a good girl a wonderful career and soon getting her PHD while working. She doesn't know it but her boyfriend asked me to help pick out a ring. So excited for her wonderfull life. But she is so sensitive and I know she will be crushed when I go.
I have had plenty of time to know this was coming , but I'm really feeling down like a sinking ship.
I had a therapist for a few months my share of cost was to high had to stop . My Dr has changed my depression med. Never really been an over-thinker, but I guess I'm scared.
I have been a member here for quite some time, it has taught me so many things about this horrible
disease, And in some way feel as I know some of you. I think this is my first post about myself. Sorry for the rambleing.
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Ncbirdwatcher
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Thankyou for posting I hope we can all send you much love for what you are experiencing and the devastation of having to accept a shorter life span.From a daughter that lost her Mum to Nash please talk to your daughter tell her the truth, it's not an easy thing to share and life is too short to waste, have the talk, I know you may not want to interupt her own career but you may also underestimate the love between mother and daughter, and for you knowing she has a lovely boyfriend who has shared his future hopes with you hopefully gives you peace of mind that she will have support to. I can only say for me there was no question of being there for my mum and love saw us thru, I really felt honoured to be there and care for her and for me to realise what is important in life. I send you much love 😘
Thank you for the kind words. My daughter knows all about my illness,she is my caregiver. We have a very wonderful relationship. She has spent so much time and financial support on me,it breaks my heart. I often read the caregivers concerns on posts it can be so overwhelming. From the patient and moms side I am also very concerned for her it's all so twisted we've been on the rollercoaster for a while. I have remained calm trying to follow the rules & stay healthy as possible. But the bad days are getting harder. We will lift each other up with love and memories. Cheryle
Cheryle Iam smiling as I know you are both so lucky to have each other and from your words I know you're daughter will be there every step with you and in your worry for her know that you have raised a beautiful daughter and this will make her stronger, proud to be your daughter and although she will witness sadness she will experience some of the most precious times with you. I know you worry as a Mum but sounds like she's got you babe 😘
I am so sorry to hear about your news and your pain. I can't really imagine what you are going through and you must be so scared and worried for your daughter. I am an only child who lost her mum and soul mate and am now a carer of my husband with liver disease. It is devastating to lose your mum but my husband helped me through and I am sure your daughter's boyfriend will do the same. I am sure that she will find some inner strength to cope as she is coping now. She sounds an amazing young lady and you should be so proud of what you have achieved in raising her alone.I see you are in the States so I don't know if you can access the British Liver Trust helpline and zoom forums but people there are so kind and helpful. If not perhaps there is something similar there. It is natural to feel scared and I hope that you can get some help to get you through. Thinking of you and your daughter with all my heart.
Breakfastbabe, Thank you ! I have had many talks with her but she doesn't want to talk about it. She knows everything,and worked in a hospital for many years also. I am so proud of her all she has acomplished . Her masters degree and next her PhD. Her boyfriend picked up the ring today. I am so happy for them she has no idea yet. But it really easesmtmind they are a beautiful couple. They spend much time on international travel . I worry about my HE becoming worse , and pray for it to be peaceful. You don't want your family to go through it.
I am sorry for your losses also. And hope your husband is doing well. And thank you again. Cheryle
It’s important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.
This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.
Although these conversations can be difficult, patients and their families or carers often find that planning ahead brings them peace of mind. Your healthcare team and loved ones need to understand your wishes and be aware of your thoughts and preferences.
For more detailed information you can download our Thinking ahead booklet, which also covers end of life care in a separate section that can be looked at when you feel ready.
British Liver Trust, I have made plans a Dnr plan for medical team and hospital. A will giving daughter the rights if i'm unable. A plan for cremation . And a folder of all important insurance and other documents. It all sounds so worked out. But the worries for my daughter are making me feel so much pain.
Hi, you’ve had some helpful replies and I just wondered why you have decided against a transplant if this is a possibility. You say it’s your age but 63 isn’t old. I’m 74 and got diagnosed with NAFLD about 3 years ago and with a few changes to diet etc I’m managing. I’d also like to tell you that I was 31 when my mother died of ‘chronic active hepatitis’ in 1981. I never really found out the reason. She was not a drinker and I wondered if it was because she had been a blood donor or even if she had been given a contaminated blood transfusion as she had been in hospital for a minor operation a few years earlier. No one seemed to be able to explain the reason to me. It has been difficult for me and I have so many regrets that I lost my mum as she was so young and active. I’m sorry she didn’t live to see her four grandchildren and I miss the happy times we would have shared, however I had to be strong to look after the baby I just had and support my father and my family. People are surprisingly resilient and your daughter can go on to have a good life always with the fond memories of the mum who loved her so much.
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