May 2024 was diagnosed with autoimmune hepatitis and billary which has caused chirosis of the liver . I had been suffering with symptoms and had raised LFTS for a couple of years . I had 2 scans which showed a fatty liver . With in those 2 years I became worse with a few hospital admissions treating abscesses , severe stomache infections , gall bladder infections .
since May I’ve become semi dependent as I am always poorly with flu symptoms , temp , stomache pain, loose stools and nausea , headaches. Feeling light headed and weak. Loss of appetite. Now I suffer with anemia and need blood transfusions . Shortness of breath to the point I feel I’m being suffocated. My mental health is at an all time low . I am frightened how quick I am deteriorating and feel abandoned by the health care .
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Cheesesconelover
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I am sure you will get great support from others on the forum too, but if you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Hi sorry for delay in answering been in hospital again . Thank you for your advice and I have contacted a liver nurse and she explained how to get more info from my Gp and consultants .
Hi , I’m sorry to hear how low you’re feeling. I’m sure that now you’ve got a diagnosis things will start to improve. Once you see a liver consultant they’ll probably start you on treatment and you may find that your other symptoms were linked to your liver and they improve too. It’s normal to feel low after a diagnosis and to worry. This is definitely the place to offload those worries and get support from others in the same situation. Welcome to the group.
sorry to hear this. I hope you have regular follow ups with the hepatic team? If not let them know how you are feeling and see if you can arrange blood, follow up calls. It’s easy to get depressed and worried in a vaccuum of information x
I feel over whelmed and so depressed . 2 years ago I worked full time for the NHS very stressful job but rewarding . I also had a horse , always had horses . I was on the go with a family to care for . Life was good . Then I became poorly stomach problems , gallbladder infections , abscesses, flu like symptoms and Covid kind of finished me off . I was always poorly and had severe angina and heart failure. I had to take early retirement , sell my horse , and now hardly function . Sleep a lot in pain constantly . Suffer nausea and headaches. I now have severe shortness of breath on walking , doing any kind of movement . I am lonely and feel shut off . My anxiety has blown out of my control , the thought of dealing with people when they come to my door gets me in a state . I never use to be like that . Since separating from my husband 12 years ago I became an independent person brought my children up and supported us financially. I am a different person and I feel so confused why .
It’s really difficult to deal with pain and fatigue. It’s easy to become isolated because it takes energy to socialise. I wonder if you’ve got long covid as you got worse since you had it? There is lots of research now and treatments. They are making links with ME and chronic fatigue conditions. I’m wondering if they will find links with liver diseases like PBC. They are finding that Metformin used to treat type2 diabetes helps, as do some antihistamines. It might be worth talking to your GP about it because there are Long Covid Clinics in NHS hospitals.
You will learn to pace yourself and focus your energy on things you enjoy rather than stuff that isn’t necessary (ironing…). Your priorities change and you learn to accept needing to rest.
Are you getting PIP? Talk to Citizens Advice about claiming it if your not. It might give you the money to spend on things that will help. Horses are obviously important and very therapeutic. Maybe a local stable would let you go and hang out, even if you can’t do much to start with. Or a cleaner so that you have company and energy to spend on things you enjoy.
I’ve recently joined a local dog walking group. It’s an hours walk and coffee outside which does me the world of good. I go home have lunch and sleep most of the afternoon but it’s worth it.
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