Fed up

[Vespa27]

I am so very fed up with my situation I have the AIH PBC overlap...I am currently having issues with digestive system, plus horrible headache, nasty thirst, fatigue from hell feel so unwell. Going to see consultant tomorrow but that seems pointless sometimes, hes gastro not hepatology.....my ALT is 200 as well so something going on....I can't eat anything these past 48 hours either. This is becoming too often for comfort. Should I ask tomorrow if it would be in my best interests to see a hepatologist..my nearest liver unit is St James in Leeds. Tomorrow I am at Pinderfields. Thanks for any advice. Any help in how to get him to listen would be brilliant. Thanks x

[Hidden]

Hi Vespa27, Have you ever been tested for celiac? I ask because i also have PBC/AIH overlap and celiac.

[Vespa27 in reply to Hidden]

I have but it always comes back inconclusive.

[Hidden in reply to Vespa27]

It may be an idea to try gluten free for a bit and see if it has any impact, may be an intolerance.

Hope you get relief soon.

[Hidden]

Hi Vespa

Welcome to this usually very friendly forum 👍😁.

I have no knowledge about your sort iof issues but I have been through the “process” re liver problems ending up with a TP last year.

So my experience is (we can’t give “advice” lol) that to get anything done You will need to see a hepatologist at a liver clinic. If you don’t get a referral why not just ask why not? I have no real knowledge of what that high ALT number means except it’s high.

If you still have no joy - but I can’t see why you shouldn’t- and you really feel ill then you could - horror of horror pay to go privately. I know it goes against the grain - well it does for me - but what price your health - that’s the only way I could justify it the couple if times I have had to go private.

But probably your best bet would be to ring this forum’s help line. You get to speak to a nurse and she will help you. In fact I would do that before your appointment!!

Good luck

Miles

[jazzjam]

Hi Vespa27, I hope all went well, did you get any answers or get a referral ?

[Vespa27 in reply to jazzjam]

Hi jazz, this time I was in with consultant for over half an hour, his usual being 10 minutes. He is not happy that I am unwell. He feels the medication is not doing its job properly...he agrees that something needs doing. He went to speak with the head hepatologist on Thursday afternoon and said he would write to me to let me know what comes next. Suggestions in favour of changing my mercaptopurin to something else, he never discussed with me what that would be...when I mentioned my fatigue from hell he just said that its common with AIH when you are not well....I replied that fatigue has been an issue with me from the beginning....I am now waiting to hear from him. I will keep you posted. I will have to leave my job for sure which is not ideal because I am getting married in May next year and I need to be well but also need money to pay for it...take care of yourself xx

[Vespa27 in reply to Vespa27]

Hi guys as I said, I will keep you posted regarding my waiting to hear from consultant. I had a letter yesterday stating that he wants me to have a liver biopsy done it is urgent I have this done but hw never mentioned such an invasive procedure. He only mentioned medication changes. I am not having this done unless they try me on a new medication first. I refuse because I had one of these 8 years ago to confirm diagnosis...but it was a horrific experience. The anaesthetic did not work on me and I felt everything.....I told them back then that I will never havthe procedure done again and I meant it. I rang hia secretary this morning to explain that I was going to refuse it also to the radiology department where appointmeade and told them that I would be refusing it based on padt experience. If wgat happened 8 years ago has made me refuse this now, you can only imagine what I went through. I am now awaiting his response. I expect he will want me to have it done but things have to be put in place first...besides, I am sure there are other ways to look at the liver without invasive procedure. Any advice would be appreciated thanks guys x

[lottie1964]

I am 54 bedridden thanks to hospital failing to get me out of bed for three months. Now in a nursing home, had the last rites twice at Xmas, estranged ftom husband. Fluid uncontrollable, drained everyday now, sometimes twice. Just had catheter removed due to serious infection which can lead to sepsis, so doubly incontinent and have to wear I'll fitting nappies. Trapped in one small room with a call bell that carers often choose not to answer. Never taken for a shower , had one in three years. Can't sleep. Suicidal most of the time and in constant pain due to bed sores , one of which opened to the bone. Any advice any one, hopefully on how to end thix nightmare.

[alfredthegreat in reply to lottie1964]

Hi Lottie. Do you have visitors that could talk to the care staff on your behalf to try to improve the situation you are in at the nursing home? For instance having a word with the staff about why they are often not answering your call bell. Are the bed sores maybe the reason that you are not taken for a shower? In this day and age nobody in your position should be in constant pain. Is this something your visitors could discuss with the care staff? very best wishes. Alf

[P13jne in reply to lottie1964]

Hi Lottie you’re so young to be left like this. Are you able to have any friends or family speak to the medical staff? Is there an ombudsman that could help you?

I wish I could offer more than this to help you. If you need or want to rant or chat please do, as plenty of people on here care for you and your plight.

Please message me anytime.

Jane xx