I have Non-alcoholic Fatty Liver Disease (Decompensated).
Looks like I'm coming to the end of my journey in life. On being diagnosed in July, my decent has been rapid. More & more of the end stage symptoms are showing. I thought maybe I'd have a couple of years to see if I could halt the damage & maybe get a transplant. Doesn't look like that's going to happen.
I wanted to make it to support my son (15) transition in to adulthood. Doesn't look like I'm going to be there to do that. I hope he can cope. That's my only wish. I just want to know he's going to be okay. I love him dearly & we've always been close. This will be hard on him.
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Biggsy77
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Aaww so sorry you feel that way.you know nightbird? the girl who joined americas got talent who had cancer?
Well i asked you that question because i remember the word she said when her doctor told her that she has 2 percent chance of survival and nightbird said 2 percent is not zero..
I totally agreed to that.. because in that 2 percent theres so much that could happen.. just look at the brighter side.
I was too was diagnosed with decompensated liver cihhrosis due to alcohol last august.. i have symptoms too like ascites and HE.Loss of appettite, no energy, severe weakness etc..
I followed my doctors advice to never drink again so that my scarred liver will not get worse.
Like you i was so scared because my daughter is only 9yrs old and im 34..
I was so scared at that time. I prayed so hard for my second life and promise not to touch alcohol again..
As of now i feel a lot better compared before.. Like im living my normal life already (knowing i have permanent liver damage)
So i know you can get better too i hope so. I hope this can give u a lil bit of comfort
If your condition is non-alcohol related liver disease and you are seeing such a serious increase in decompensated symptoms can I ask are you already under a transplant clinic?
If not then you MUST seek referral a.s.a.p. to touch base with them and see if you are eligible to be assessed for t/p now.
There shouldn't be any need to wait to try and halt damage as that probably isn't going to happen if you have NAFLD related cirrhosis - getting under the care of t/p clinic will put you under care of dieticians and all manner of other specialisms who can help you prepare for t/p if that is now the stage you are at.
Don't write yourself off yet but do PUSH for referral to transplant clinic, they prefer to see people too early rather than too late.
Call the British Liver Trust tomorrow. I am amazed that you are not near the top of the list for a transplant unless there is something we do not know (and of course it is your prerogative to keep things private certainly). Don't give up hope just yet. A person who has only weeks to live probably would not be able to go online and use the computer and write a coherent paragraph as you did. This board is filled with people telling their stories - about how they were already planning their end and now 20 years on they are planning their next vacation. Of course not always does it end this way, but not always does it end badly that is my point. Call the numbers you have been given and good luck to you.
I'd always give full context & I'm very open about discussing anything. The only things I'll redact is personal information about people in my private life & on occasion anything to identifying about me. Like my address.
I am supposed to get a blood test every couple of weeks, to check my kidneys are okay, the to furosemide . Thursday was the first one I've had in about 6 weeks. Things are bad in the NHS where I am.
Hi Biggsy, I'm so sorry you are feeling this way, but don't give up yet. I would give your consultant secretary a call, tell her you think symptoms are getting worse and ask for a call back from the consultant. He will of had time to digest your notes when he calls back. My relative is in hospital now (alcoholism) who is at the end of life and waiting for a hospice place. I can honestly say that they are very poorly indeed, but it has taken a very long time to get where they sadly are now. Everyone is different, but you could have a long time with us yet. Who knows, a transplant could happen for you. I hope you are on the list, and if not, speak with your consultant urgently. I understand totally your concerns for your son, and it might help to talk to your gp about support networks. I lost my dad suddenly at 15 and there was no support back then. I hope he is coping ok at the moment. Speak to your dr about your worries and try to stay positive. Easier said than done I know, but you could have years yet and there's always the hope of a new liver. Wishing you good luck.x
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