Curious

So there's just over 5500 people in the BLT forum, I'm curious as to where everyones from... Maybe someone lives near me? Always nice to know you could meet someone for a coffee & cake with a bit of natter...

Hope your all ok, I'm from Portsmouth by the way...

Chelle

96 Replies

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  • North east

  • My other half is from Sunderland so I'm up there every 3-4 months in particular for the Air Show in July!

  • bit too far. good old Birmingham lol. but I agree it's a very good idea

  • you never know if someone is down the street from you!

  • Yeah that's true!

  • I lived in Birmingham for a while, just up the road from Edgebaston Cricket Ground! Whereabouts are you?

  • oh I know the cricket ground. I'm more great Barr area .

  • I used to love the park opposite the cricket ground :)

  • oh I still go there .I love it.

  • Cannon hill Park is a lovely place x

  • I'm Harborne way not far from city center x millie09

  • Are you.i know harborne .used to work there years ago with Thomson holidays 😊Xx

  • Yh lived here all my life xx

  • I live by great barr now. Only moved here last September but I'm am erdington girl born and bred 😉xx

  • Bit far for me,I'm on the coast near hull so travel to Leeds for treatment, Portsmouth is a long way, drop me a line if your up this way

  • Mick, it's would be a pleasure and I think you need a good old chat and a bit of sticky chocolate cake! x

  • I'm in Chelmsford, Essex :)

  • oh I was in Basildon yesterday...we have one of our factories I visit just there!!

  • Next time you're in the area let me know! I'm not able to travel (can't drive and have CFS/ME) but there's a lovely cafe in the city centre that does the best carrot cake I've ever tasted :)

  • That sounds like a must visit I should be up in Basildon in a few weeks again!

  • Don't your hospitals you go to have a support group for livers, we do at Leeds and support group is on Facebook and we meet up a few times a year it's great to have local support x I am in Manchester x

  • Kings have one, they meet last Thursday of the month, first one was today. I work full time and getting to London to go to a support group isn't always possible. There is one in Portsmouth for those with Hep C, but I don't have that. It's sometimes just nice to meet people outside of support groups....I know I shouted at my other half today for no reason told him he had no idea about things that were going on with me....he was kinda dumfounded as to where it came from....I know he supports me but sometimes its nice to chat to someone else. I know you guys are great and all just it's nice to chat to an actual person sometimes that's not family or friend that you worry about hurting! lol.

    Hope your feeling better xx

  • Oh God you know I understand that's why the group I joined are great they meet on Saturdays and I have met people on an individual basis and some of them visited me in my local and in Leeds hospital they also have people on with all liver conditions. I know I live no where near you but I am always at the end of a phone if you need a chat hunni x

  • Thank you. I was having a bit of a rubbish day yesterday. I think I just needed reminding that feeling sorry for my self isn't my game...Suck it up and get on with it! Plus a good old cry to my other half and my mum done me wonders! lol

    xx

  • Bloody hell were all entitled to bad feeling sorry for ourselves days ill or not we would be robots otherwise x

    Hope you have a better one today :-)

  • yes I am sure there is one at the QE in Brum .I'll find out Tuesday as that's my first appointment

  • A couple of people who had there transplants at QE are on the Leeds Facebook group, one of them is a very very close friend of mine now.... X

  • really! how lovely. I'm hoping to join in the QE group if I can. it's a good half an hour away by car on Monday evenings I'll try to find out more info next Tuesday. I would love to hear their journey. hope your still doing well jojo xx

  • Do they have one as that's the hospital I'm under x

  • Which hospital are you under?

  • Qe huni apparently best liver team just hope they dnt let me down x

  • They certainly are the best my consultant at my local hospital was gutted I was under Leeds and not QE. And I am sure they have a support group. I have a couple of friends who had been under QE so I will ask them :-) are you on Facebook as a lot of online support groups there as well x

  • Yh I'm on fb I've heard alot about qe liver team all good I must add so I'm hoping they will sort me soon xx

  • Yes they have support group at hospital every Third Monday. It's run by a lovely man called Alan Hyde. I have his contact number if you want it hun ;he had liver transplant 17 years ago 😊xx

  • Wow 17 years ago I would like to talk with some who are in kinda the sane boat it's hard talking to friends and family people to its hard work trying to explain to people the issues I'm having xx

  • Yes I know, I was shocked when he told me too.i know what you mean, no one can really understand how we feel, only someone else like many of us on here . I tall to my sister as we are very close so I'm lucky theee. I will find Alan's number and send it throug messages for you hun xx

  • I was talking to an older gentleman who was at the hospital when I was there he had his liver transplant 17years ago and still going strong and the AIH hasnt returned gives people hope I'm no where near liver transplant but still when your faced with a life long illness that has a very good chance of getting worse it's nice to here xxx

  • We're you? Sometimes we can over think things, when I was told I had f4 end stage liver disease in Feb this year. I was really worried;I still am a little bit but I know someone from another site who has the same as me and is not on tx list ; she has been stable for 6 yrs now apart from tiredness

    As long as we do as our consultant advises us to do then I have every faith whatever happens. My consultant is lovely. She really tells you as it is. Xx

  • I am in Hackney, East London. Sometimes my job entails me to travel to towns on the South Coast - Portsmouth being one. I like it down there - lots of Maritime history

  • I am ex RN so I love all the history down here, my father is ex RM and by other half is still currently serving in the RM....It's a truly excellent place. I used to work in London, lived out at Limehouse.

  • New Zealand :)

  • Well you never know someone might need some rest bite and come visit you...I have to stay within 4 hours of the hospital at the moment, so I wont be visiting any time soon! lol x

  • Ok wont change the sheets this week then !! Cheers from Down Under NZ x

  • From Liverpool originally, now in Bognor Regis.

    Jim ( and Lucy now that she's moved from London )

  • Bognor is great. I used to work at Butlins...not as a red coat I hasten to add...lol

    Had lots of fun there though!

  • I'm originally from Liverpool too ... Still call it home ... West Derby/Notty Ash

  • Huyton

  • I am in Margate Kent and have attended good support group at Kings

  • I think I will go along to a support group, the travelling takes it out of be a bit now...I like Margate, I have connections to Ramsgate from being a child. Used to go to Margate for days out.

  • Not far from you, well, my parents, Minster near Ramsgate. :)

  • I am right across the pond in Austin Texas

  • My other half an I have an idea, as a lot of people do I am sure about getting out to the US and travelling for a few months and Texas is on his hit list....Sure it's so he can get a pair of decent boots....He tried some on in Camden Market in London and fell in love with them!!

  • You have to go to Allen Boots in Austin also if you want some custom handmade boots then it's Lucchese in San Antonio while your here might as well get you a handmade hat at Texas Hatters or Austin handmade hats,

  • Austin is a great music city. Have been over several times for business. Never managed the music festival yet!

    I live in Christchurch, Dorset, UK

  • I grew up in Austin and I have seen some of the best bands all genres you can think of all through the 70's there was spot called the armadillo headquarters nightly bands, then in the summer there where concerts off the highways called summer breaks, of course Willie Nelson 4th of July, they all where for 3 days with music 24hrs a day. Now days it's crazy crowded but fun it's a good week

  • I could be what you are looking for chelle. I live in southampton with my mrs who is being discharged today from the QA cosham, She had a bout of HE when we had a break on hayling island I to wish i had known about you last week. me and my mrs would love to get to know you better. at least a coffee and a cake

  • See as soon as you mention cake everyone's happy! I have a static caravan on Hayling Island and work in Southampton over at the Millbrook Industrial Est. well there and a few other sites which the company own. How are you and your wife now? It would be lovely to meet, to chat and have cake even if its at your next appointment in QA at the costa there. Was your wife on C ward? I was on C6 last year for a few weeks...the staff were very friendly to me...

  • We where @lakeside for her birthday on the 15th & had a HE episode

    We live in thornhill

    Yes she is was on c5 and coming home tonight fingers crossed

  • That's good news, I will keep my fingers crossed for you both!

  • Aah static can't beat it I do miss mine, I had to get get rid of mine had stayed there for over ten years as lived alone and into a warden asst flat before transplant, also had to sell my tourer, loved going with near canals so could walk along tow paths as lost my driving lunches due to HE but on the way up thanks to all now.

  • Oh that would be lovely ... but ... I'm North Staffs/Derbyshire border near Ashbourne :( I often think about being back at school and having 2 pen pals ...

  • Jeannieb12, if you'd like a pen pal I am happy to let you know my address...I remember having a pen pal at school, a child in Africa was mine!

  • I live in Kiveton park a village outside Sheffield and go to Leeds however I don't drive so would find it hard to get to support group at Leeds. I find this forum very helpful but like you would like to meet people who have or are experiencing the same things. Anybody interested from Sheffield Rotherham or Worksop I'm in middle of all of them lol

  • Hi Chelle, there is a 'people near me' search function in the profile section of the forum. I think you have to opt in to this to see other members close to you who have also opted in.

  • Yes I looked at that the other day, just thought I might ask. Hopefully bring some other people together. Hope your ok.

  • Hi from South Africa

  • Hi, where snouts in sa, my twin sister and brother are still out there, I am originally from Kabwe, Zambia, came to UK about thirty years ago,

  • Hi sorry for late response I am in Pretoria. How are you doing.

  • Good news, Chelle. A new support group has just started in Portsmouth, organised by Liver4Life. I'ts called "Liverchat!" and it's on the 3rd Tuesday each month from 6.30 to 8.00 p.m. It's for Auto-immune liver diseases e.g. AIH, PBC, PSC (not alcolohic - there's a different group for that).

    I hope you will be able to come to John Pounds Centre, Queen Street, Portsmouth. PO1 3HN.

  • Wow that's excellent news. I will definitely attend, that's if it's ok; I have liver Cirrhosis and Portal vein thrombosis....? I know where John Pounds is.

  • Hi Chelle,

    Do you know what caused your cirrhosis? Mine was caused by Auto Immune Hepatitis. I think this group is specifically for any with auto immune liver diseases but I may be wrong. You could contact Liver4life to find out more. Their email address is liver4life.org.uk or you can contact the free helpline on 0800 074 3494

    Hoping to see you there Koinonia

  • Mine was caused by Blood cancer that I have, it's a form of Leukaemia. I will contact the liver4life people. Thank you though. X

  • Just wondering, why is the alcohol related group separate ?

    Jim

  • Because those with rare or auto-immune conditions have different complications to their liver disease due to the immuno suppressant medicine regimes, different manifestations in the disease itself - totally different needs than those with alcohol induced liver disease. Support groups are set up to support the different needs of the attendees and auto-immune liver diseases are a group on their own.

    It isn't a slur on alcohol induced illness patients (there are support groups for this too) it is just a support group for auto-immune illness whose patients need a totally different support/guidance network.

    Katie

  • Katie,

    Thanks for you reply, however, I see that there is more to unite the disparate people with the varying causes of the liver disease, than there is to separate them.

    As far as I am aware the end result of liver disease is the same regardless of the cause. Also, post transplant immuno-suppressive medication is the norm. I would be interested in how the symptoms are different.

    So often, people with liver disease are afraid to disclose due to ignorant comments or beliefs that liver disease automatically means you are an alcoholic. We all know this to be wrong. Sadly the George Best film has just been released, so we should all be prepared for a repeat of the controversy around donation and liver disease.

    I won't reignite the discussion we have already had here, regarding perceived prejudice, within the 'liver community' toward us with alcohol related liver disease (ALD) so I'll leave it there.

    Jim

  • The symptoms, medication and manifestions of auto-immune illnesses can go on for many years and may or may not ever lead to transplant. Therefore people with auto-immune liver disease need lots of support with their illness, many learn they have these mysterious illnesses completely out of the blue and the medicinal regimes can be very challenging. If it does reach end stage then yes regardless of what led to the condition it is similar BUT people can live with these auto-immune conditions for tens of years and it is only appropriate that they get support with their conditions.

    There are currently over a thousand members of a facebook group on the subject of Auto-Immune Hepatitis - less than a handful have had transplants, a similar number are currently listed and the rest post often seeking advice and support on the different treatments - often when a patient has one auto-immune condition they often have many and their experiences are not shared by those whose liver condition results from other causes.

    There are support groups for all manner of liver illnesses, some are joined up, some purely for PBC, purely for Hep C, purely for pre or post transplant patients. For many years the liver education out there was only aimed at alcohol related matters which sadly has proliferated the misnomer that all liver illnesses equal alcohol so it is now good that support groups and research is going on with the other causes.

    Katie

  • Sorry, I'm in Scotland, about 30minutes from Edinburgh, a place called Grangemouth,

    I would love to meet someone for a coffee and chat, x

  • It's nice to talk to someone else. I'm from Salisbury, Wiltshire and it seems to be a huge taboo here xx

  • Hi! I'm not far from bath, Wiltshire:) I attend QE and Bath RUH x x

  • Hello, I am in Kent, I live in Dover, although spending a lot of time with my Parents in Thanet. Dad is has end stage cirrhosis, due to Non alcoholic steatohepatitus.

  • I'm Northampton. Always up for a good cup of coffee is you pass by! X

  • Hi, im in kent, near Canterbury

  • On a road to no where....

    Paradise city......

    Do you know the way to San Jose.....

    Nutbush city limits.....

    Take your pick little Miss Curious!!

    Oh and it is Sussex by the sea, but if we get global cooling I'll not get my feet wet!!

  • there's always one!! lol...

  • Thats me, Iron boy!

  • North Carolina

  • I am actually in Portsmouth. If you want to chat let me know.

  • Whereabouts are you Andy?

  • Right smack bang in the middle near Commercial Road.

  • Proper Portsmouth, I live on Hayling Island, nothing like living by the sea!!

  • you are practically in the sea. I have lived on a few islands as diverse as Portland and Hong Kong island.

  • I am in Oxfordshire. Anyone near there?

  • Chelle you ought to join the Portsmouth LiverChat!

    group. Contact Liver4Life liver4life.org.uk

  • Marie1980x this is the post I was talking about!

  • Brill will have a look though thank you Chelle anyone in Birmingham xx

  • I was thinking the same thing Chelle, from what I understand there's a lot of users on this site, who used to use this site and no longer do. I myself use this one and another Facebook site, "People who had liver transplants in the UK". I asked the same question in that site and a lot of people said, "Oh I used to, but don't use it anymore". So although there might be 5500 registered users I don't think there's that many who use it on a regular basis.

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