Saw my liver specialist today. Mentioned my memory and concentration are really bad. She did a test to see how much ammonia is in my blood, having too much can cause cognitive issues. Has anyone had cognitive issues with PBC? She also is doing a CBC and a "new" test called "fibrosure". Can be used in diagnosis, I had a liver biopsy for my diagnosis though. She wants to see if there is an increase in scaring. will let you know what I find out.
Also last Sunday morning a friend of mine just died! Her heart just stopped. She was found laying face down on the floor. I didn't find out till mid-day Monday. I was in shock! Still having problems with it. She was a good person, I'll miss her! I don't mean to be depressing but it's been hard believing she's gone!
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krazy-girl
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So sorry to read your post this morning. It is bad enough coping with what has been sent by way of PBC but to lose a good kind friend so suddenly is difficult. I always think how wonderful for the person that goes quickly, I have known so many with lingering problems, but it is difficult for those left behind. Taking time to grieve is important, as I am sure you will know. My very kind neighbour died a few weeks ago after losing her battle with MND. She was young in terms of today's life expectancy and she is sorely missed by her husband and the rest of her family but when I remember her I will think of the wonderful vivacious lady who always had kind wisdom to share.
As to the PBC, I suffer with brain fog but have never been offered an ammonia test. I would very much like to know what a fibrosure is, as it is new I suspect it is not yet available in the UK. Let us know how you get on.
So sorry to hear of your loss. It's always hard to lose someone, but when you are already struggling with a condition like PBC, it becomes too painful. Can you help, or speak, at her funeral? I found such procedures very healing and cathartic.
As to the brain fog with PBC, it is very common, and it's really good that your Medic responed so quickly. Take care and nurture and yourself.
Oh my yes. I can't remember anything and I find it hard to concentrate and learn new things. I find this extremely frustrating as I was very focused and never forgot a thing before. It's hard at work as no one understands and some nasty things have been said.
That's true it's very frustrating and no one (except those with the same problem) understands, I feel like people are looking at me like it's a convenient excuse!!! I try really hard to stay efficient, notes in my phone is my saviour!!! It's kind of reassuring to hear other people experience this too!
Gritty roads has it absolutely right about doing something positive for your friend. If you are not comfortable with doing something public like a reading, maybe making up a small posy of the flowers that she particularly liked or suggesting something to be read out at the funeral or a special photo that could be used. Somehow our own problems, however bad they are, aren't quite so bad when we remember that at least we are still here and can be of use. Your dear friend, sadly, is now only in your memories of the lovely person she was. Be gentle with yourself but make her proud of you.
So so sorry about your friend. I know that has to be difficult, plus with everything else you're going through. Praying things smooth out soon. But you asked about the ammonia issue. I take Xifaxan for this actually. I have too much ammonia in my blood which has effected the way the neurons of my brain function. It's almost like they are clogged up. The Xifaxan helps to break down the ammonia. Some people are prescribed a form of laxative like Lactulose. This is to make you "go" at least three times a day. Unfortunately I also suffer from ulcerative colitis so the Lactulose isn't something that would work for me since Im already in the bathroom at least three times before noon😳. It isn't fun, but yes, it is part of PBC.
So so sorry for your loss Krazy-girl. It puts a lot of things in perspective. I agree with everyone...find a way to honor her...maybe in a speech about her life or being there for her family.
Krazy Girl My heart goes out to you for the sudden death of your friend. As for your health and the outcome of the tests,please let me know, as I am very interested in this Ammonia in blood result.
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Bit of an epic for which I apologise.
Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?
So tired and itchy and tired of being itchy
