Anyone who attends Kngs College Hepatology. - PBC Foundation

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Anyone who attends Kngs College Hepatology.

CathieG profile image
7 Replies

After months of struggle I have finally been referred to KCH. This was no easy task and I almost gave up and had decided to just keep taking the Urso and get on with life. Then my sensible brain kicked in! The consultant in Leeds had told me that when I moved, I should make sure that I was referred to a liver specialist unit for continuation of monitoring etc. On moving from the north and being treated so well by St James's inLeeds, to relocating in Mid Sussex, I'm yet to find anyone who knows anything about PBC. My last attempt at being referred to a Hepatology department resulted in waiting to see a general surgeon! It's only when I spoke to the surgeons secretary and she had never heard of PBC that I knew I was on the wrong list....again!! Unfortunately the angry and frustrated me came out to challenge my GP. However, this resulted in a phone call yesterday to say that I had now been referred to KKH! Yippee. This is going to mean a long journey but I can cope with that if I know I'm going to see the right team. Someone on here had posted that they attend Kings so I'm just wondering how many others attend this clinic and your experience so far. Now looking forward to a calm and peaceful day!

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CathieG
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7 Replies
Dese profile image
Dese

Hi I'm under KCH the best thing I done my other hospital the doctor there was an old dinosaur wouldn't move with the times of pbc. I got my GP to refer me I didn't wait long for an appointment best thing I ever done the doctor I'm now with specialist in pbc in 4 months I have had all my tests done and all my results back on the right dose of urso. With the other doctor he gave me a liver biopsy because to him my blood results wasn't enough. even though I had all the bloods showed up for pbc now I'm with to me the best doctor ever. Hope this makes you feel better good luck

CathieG profile image
CathieG in reply to Dese

Thanks, thats made a lot of difference. What name/department should i look out for on the appointment letter? It all went pear shaped the last time so i need to be sure i haven't been referred to the wrong place again.

Dese profile image
Dese in reply to CathieG

Hi they have there own liver unit there own blood test part. It will be on your letter jubilee wing 3rd floor.

Yvonnejulie profile image
Yvonnejulie

I think I need to do something as I went in for my first appointment in Milton Keynes hospital middle of last year, told to take my urso for 3 months then an appointment would be sent to check my bloods etc and haven't heard anything since! The doctor even said it was because I was constipated (if I don't laugh I will cry) knew then it wasn't going to be good :'(

Starfish72 profile image
Starfish72

Hi

I was diagnosed with PBC last June and although URSO seemed to bring my liver function back to normal my liver inflammation remains too high. Steroids made it worse and my consultant in Sheffield is puzzled and says I'm an 'odd' case. He is referring me to Leeds which upset me at the time due to travel but reading your post today has inspired me as you seem to think they are the best!

Let me know how you get on x

CathieG profile image
CathieG in reply to Starfish72

Glad it helped. Yes i would rate Leeds every time. Let us know how you get on.

CathieG profile image
CathieG

Oh dear! Phone them on Monday. Ive found that if we sit back and let stuff happen to us, it does! Not always for the good.

Good luck and dont give up.

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