Referred to specialist unit

[crundalite]

I have been waiting for the results of a liver biopsy since May-largely because the pathologist was off sick/on holiday and no-one knew whether or not I needed treatment for AIH overlap. I was diagnosed with PBC some 20years ago and had become a bit complacent because although I appear to have some of the associated symptoms they have not prevented me functioning to the best of my ability. Fatigue and lethargy are things I try to ignore as much as possible. This morning I received an appontment with a specialist unit in Birmingham-some 5 hrs travelling from here. There are no units in Wales.This came as a shock as no-one had told me to expect this. I am trying to remain upbeat and tell myself I have been referred because there are no experts nearer to me but I am worried that things may have progressed further than I realise.

[littlemo]

Hi there I would look on that as positive having had PBC for 20yrs I amsurprised you have not been attending a Hepatologist all along. The best person to discuss the results of the biopsy is a Hepatologist as they are the specialists and can give you the results whether good or bad and discuss any treatment you may need and answer any questions you may have. Take care hope all turns out ok stay in touch. x

[crundalite]

Thanks, littlemo, for your reassurance. I have been under the care of a gastroenterologist but unfortunately living in Wales does have it's drawbacks. Less access to health care being prominent in some areas.

[Hidden]

Where in Wales are you? I am up north and we don't have any up here either, just gastroenterologists.

[dianemle]

I have been under a gastro for 12 years despite living in London just last week been referred to heptologist. It's the NHS trying to save money in my opinion too. Some people are with heptologist a from the start. It's a long trip for you but I have heard Birmingham is the best place in the country. Like you I am worried as my appointment is on Tuesday but you are in the best hands. Good luck x

[crundalite in reply to dianemle]

Thanks for your response. I have been OK up to a point for the last 20 years but things are getting a bit more complicated now-hence the spacialist unit. I agree Birmingham has probably got the best. Good luck with your appointment. Remember PBC is not an automatic death sentence.

[gizocsi]

A good gastro can take good care, but sometimes consultations are worth of time. Have a nice journey, don't worry, after 20 yrs once to meet another dr.

[crundalite in reply to gizocsi]

Thanks for you support and good wishes.

[Mcinnel2]

I know it's easier said than done but try not to worry. Birmingham is a wonderful hospital and I suspect it's down too poor administration that has caused the delays. Try and stay positive and remember people of all different walks of life are here to support or simply listen.

[PCBnPBC]

I too live in North Wales, I am "in between" consultants, back in Jan 2013 BUPA lead me to a world class specialist in Manchester with quite some experience in PBC (BUPA only paid for one appointment as they do not cover chronic conditions under my policy) Manchester Consultant (also unaware how Wales is so cut off from what we tend to think of as the NATIONAL Health Service) I am being batted back and forth between consultants, and I am hoping I have finally got a second appointment with the Manchester consultant. I am also being referred to Newcastle Transplant dept for a preliminary appointment, I sense my condition is deteriorating with noticeable speed, I have "full chirosis" - - had I been able to remain with Manchester consultant I would have had 2 further visits, a dexa scan, and varicees re inspection, and Ultra Sounds along with bloods etc. BUT I have seen no one since Jan 12 - Oct 12 just because I live in Wales..... I am not happy!! but things MAY be being sorted out now, I will keep you posted... Are there many of us in Wales (North & South) ? wh\at are your experiences? any one at Glan Clwyd ??

[lainey67 in reply to PCBnPBC]

Hello PCBnPBC do you mind me asking what consultant you see in Manchester,i also live in Manchester

[PCBnPBC in reply to lainey67]

I live in North Wales, but was seen by Dr Prince (NHS) and Dr. Alistair Makin, (BUPA) both men emanate from NEWCASTLE where they are PBC specialists. I am now on Liver transplant list (diagnosed PBC 12 months ago) must have had it for 20 - 30 years with knowing it, now I know it, fatigue, brain fog, lethargy, gastric bleed, sleep disruption, - looking forward to the chance of a transplant...My appointment in Wales some 7 months plus after GP diagnosed PBC was short and sweet - he said : OK, I'll let you be passed up to Manchester, and I will also refer you to transplant centre immediately... I was offered a place on list straight away....

[Hidden]

I am at Llandudno hospital with trips to Bangor thrown in, ( just for a biopsy ) my last appointment was november 2012 almost 12 months back now. To be honest no one seems bothered.

[Hidden]

Hello crundalite.

It might just be the case that it is a specialist who wants to relay the information of your liver biopsy results to you as opposed to a GP.

It could also be the fact that if you've been cracking on with life these past 20yrs a specialist is interested in seeing you to just find out how you've been over time and nothing to do with anything of a worrying nature. Got to remember that doctors are curious beings and some do like to compare their patients with certain conditions to collate more information.

Please ask yourself how do you feel? If you are relatively feeling the same as you have been for quite some time then I think you might be just visiting a curious doctor perhaps.

I asked to be discharged from hospital myself 2yrs ago now as after attending 12mths and having the diagnose for 10mths of those, I personally couldn't see the point in attending at intervals. This was back Oct 2010 when I asked to be discharged. The doctor wasn't so happy at the time as I'd only seen him 3 times in the 12mths but I explained why (couldn't see point in hr's walk to hospital and then being shipped about for weight, then bloods and seeing him, took some time but at the same time my bloods has started to come down in the 10mths I was on urso at discharge). I've been a lot better these past 2 years without going to be honest.

The problem I've had in the time is that the GP surgery doesn't seem to be able to synchronise things that well!! I was getting 90 days of tablets so got every 3 months. Every 3mths until earlier this yr I was having bloods every 3mths as I took a bit of climb early part of 2012 and then came back down but now I've been having bloods for 3yrs on urso almost looking like during the colder months I come down and then climb again Spring and Summer but they are not overly-abnormal. Every 6 months I seemed to see GP with regards to how I was but just as it seemed to be working itself out now I've been informed by one of the GPs that I cannot have 90 days of tablets, they only issue 28 days which is their month and now I'm trying to haggle more out of them (due to paying for scripts). I find it is this that is causing additional hassle for me as it's not as if I do not go in at intervals to see a GP as I do.

Did you ever have bloods in print-out? If so you might be able to reassure yourself there. I get my bloods in print-out each time I have them taken. I don't bother more than glance these days but I have a rough idea that they are still looking notso bad.

[crundalite in reply to Hidden]

The only advantage in living in Wales (healthwise) is free prescriptions! I have always seen a gastro annually but this has increase to every 9months lately as a result of the possible AIH raising it's head. They do their best locally but get a bit lost when faced with anything more than alcoholic cirhosiss or HepB/C.

[crundalite]

Thanks for all those responses and support.