PBC Foundation
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28 weeks.....6 months

Ok so I have telephoned the appointment centre for my appointment to see a liver consultant...28 weeks waiting list which is 6 months. I wonder if my GP will give me a sick note for the 28 weeks I have to wait for an urgent appointment to see a consultant.....Anything can happen in six months. Does anyone know if the waiting list is shorter in Leeds or Newcastle please xxx

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Alley27,

With what you're going through, 6 months is too long to wait. I sure hope you can find another way to be seen sooner. Maybe the emergency room? Do they have that there? I'm not sure how it all works in the UK.

I just remember you were having jaundice and other issues.... Nothing to fool around with and most definitely you don't want to wait 6 months before getting care. The squeaky wheel gets the grease. Please try other avenues to be seen. You have to be your own health advocate. How you feeling today?

Stella ❤

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Feeling quite tired. Worked at the Brit awards on Wednesday night so again another long round trip plus a 12 hour shift. My pee is still amber coloured so I bought a test strip which I am going to do in the morning to check for bilirubin in my urine. I don't have much appetite but despite this I eat as I have to for energy and to be honest amd a little down because working is one thing but working then working in the house as well is something that is over facing me at the moment. I am too tired to clean up and considering hiring a cleaner for just one day a week to take some of the strain off. I don't like being unable to do anything and that's what is bothering me the most. Tomorrow I travel to London again for another shift, then back home afterwards.....also the same on Sunday...just so very tired and to be fair fed up.

My doctor may be able to override the appointment when I actually get the letter...until then I am going to get a sick note from doctor until after I get to see what consultant has to say. We do have an emergency room and believe me if the yellowing of skin gets worse I will be straight there.

Take care of you hun xx

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Good, I wouldn't take any chances. You're so busy. Sounds like maybe URSO hit a wall or maybe it's something else altogether. But the fatigue sounds like PBC.

Yeah, don't wait when time is of the essence and you can still turn this back around a bit and feel better.

Stella ❤

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In Leeds I have now waited 17 months for my follow up appointment with the hepatologist. I'm not kidding.

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