Curious: So there's just over 550... - British Liver Trust

British Liver Trust

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Curious

Chelle_ profile image
97 Replies

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

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Chelle_ profile image
Chelle_
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97 Replies
Deni52 profile image
Deni52

North east

Chelle_ profile image
Chelle_ in reply to Deni52

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

Millie09 profile image
Millie09

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

Chelle_ profile image
Chelle_ in reply to Millie09

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

Millie09 profile image
Millie09 in reply to Chelle_

Yeah that's true!

in reply to Millie09

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

Millie09 profile image
Millie09 in reply to

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

in reply to Millie09

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

Millie09 profile image
Millie09 in reply to

oh I still go there .I love it.

Marie1980x profile image
Marie1980x in reply to

Cannon hill Park is a lovely place x

Marie1980x profile image
Marie1980x in reply to Millie09

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

Millie09 profile image
Millie09 in reply to Marie1980x

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

Marie1980x profile image
Marie1980x in reply to Millie09

Yh lived here all my life xx

Millie09 profile image
Millie09 in reply to Marie1980x

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

Mick1960 profile image
Mick1960

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

Chelle_ profile image
Chelle_ in reply to Mick1960

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 :)

Chelle_ profile image
Chelle_ in reply to

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

in reply to Chelle_

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 :)

Chelle_ profile image
Chelle_ in reply to

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

jojokarak profile image
jojokarak

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

Chelle_ profile image
Chelle_ in reply to jojokarak

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

jojokarak profile image
jojokarak in reply to Chelle_

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

Chelle_ profile image
Chelle_ in reply to jojokarak

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

jojokarak profile image
jojokarak in reply to Chelle_

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 :-)

Millie09 profile image
Millie09 in reply to jojokarak

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

jojokarak profile image
jojokarak in reply to Millie09

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

Millie09 profile image
Millie09 in reply to jojokarak

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

Marie1980x profile image
Marie1980x in reply to Millie09

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

jojokarak profile image
jojokarak in reply to Marie1980x

Which hospital are you under?

Marie1980x profile image
Marie1980x in reply to jojokarak

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

jojokarak profile image
jojokarak in reply to Marie1980x

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

Marie1980x profile image
Marie1980x in reply to jojokarak

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

Millie09 profile image
Millie09 in reply to Marie1980x

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

Marie1980x profile image
Marie1980x in reply to Millie09

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

Millie09 profile image
Millie09 in reply to Marie1980x

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

Marie1980x profile image
Marie1980x in reply to Millie09

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

Millie09 profile image
Millie09 in reply to Marie1980x

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

Paulio profile image
Paulio

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

Chelle_ profile image
Chelle_ in reply to Paulio

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.

soooze50 profile image
soooze50

New Zealand :)

Chelle_ profile image
Chelle_ in reply to soooze50

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

soooze50 profile image
soooze50 in reply to Chelle_

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

LAJ123 profile image
LAJ123

From Liverpool originally, now in Bognor Regis.

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

Chelle_ profile image
Chelle_ in reply to LAJ123

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!

Jeannieb12 profile image
Jeannieb12 in reply to LAJ123

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

LAJ123 profile image
LAJ123 in reply to Jeannieb12

Huyton

chugalong profile image
chugalong

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

Chelle_ profile image
Chelle_ in reply to chugalong

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.

Roomwithview profile image
Roomwithview in reply to chugalong

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

Dldtx profile image
Dldtx

I am right across the pond in Austin Texas

Chelle_ profile image
Chelle_ in reply to Dldtx

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!!

Dldtx profile image
Dldtx in reply to Chelle_

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,

Dorset123 profile image
Dorset123 in reply to Dldtx

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

Dldtx profile image
Dldtx in reply to Dorset123

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

carllovatt profile image
carllovatt

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

Chelle_ profile image
Chelle_ in reply to carllovatt

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...

carllovatt profile image
carllovatt in reply to Chelle_

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

Chelle_ profile image
Chelle_ in reply to carllovatt

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

chugalong profile image
chugalong in reply to Chelle_

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.

Jeannieb12 profile image
Jeannieb12

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 ...

Chelle_ profile image
Chelle_ in reply to Jeannieb12

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!

Gaynorlowson profile image
Gaynorlowson

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

Dorset123 profile image
Dorset123

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.

Chelle_ profile image
Chelle_ in reply to Dorset123

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

Ninie profile image
Ninie

Hi from South Africa

chugalong profile image
chugalong in reply to Ninie

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,

Ninie profile image
Ninie in reply to chugalong

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

Koinonia profile image
Koinonia

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.

Chelle_ profile image
Chelle_ in reply to Koinonia

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.

Koinonia profile image
Koinonia in reply to Chelle_

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

Chelle_ profile image
Chelle_ in reply to 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

LAJ123 profile image
LAJ123 in reply to Koinonia

Just wondering, why is the alcohol related group separate ?

Jim

AyrshireK profile image
AyrshireK in reply to LAJ123

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

LAJ123 profile image
LAJ123 in reply to AyrshireK

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

AyrshireK profile image
AyrshireK in reply to LAJ123

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

Grankids3 profile image
Grankids3

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

Mummymoors85 profile image
Mummymoors85

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

Gemmaswann profile image
Gemmaswann in reply to Mummymoors85

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

Roomwithview profile image
Roomwithview

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.

matt137 profile image
matt137

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

pete1980 profile image
pete1980

Hi, im in kent, near Canterbury

Dulux profile image
Dulux

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!!

Chelle_ profile image
Chelle_ in reply to Dulux

there's always one!! lol...

Dulux profile image
Dulux in reply to Chelle_

Thats me, Iron boy!

jjeff profile image
jjeff

North Carolina

andy-g profile image
andy-g

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

Chelle_ profile image
Chelle_ in reply to andy-g

Whereabouts are you Andy?

andy-g profile image
andy-g in reply to Chelle_

Right smack bang in the middle near Commercial Road.

Chelle_ profile image
Chelle_ in reply to andy-g

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

andy-g profile image
andy-g in reply to Chelle_

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

vpinny profile image
vpinny

I am in Oxfordshire. Anyone near there?

Bolly profile image
Bolly

Chelle you ought to join the Portsmouth LiverChat!

group. Contact Liver4Life liver4life.org.uk

Chelle_ profile image
Chelle_

Marie1980x this is the post I was talking about!

Marie1980x profile image
Marie1980x in reply to Chelle_

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.

PeterNB profile image
PeterNB

Perth Wester Australia

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