New here with NAFLD and F4 Fibrosis/Ci... - British Liver Trust

British Liver Trust

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New here with NAFLD and F4 Fibrosis/Cirrhosis

schirrosissufferer profile image

Just to say Hi to everyone, I am living alone with this, tired all the time, can't do much, and it really is frustrating when your brain makes cheques your body can't cash... have been loosing weight with a good (ish) diet, and am fighting this as much as I can.. would be nice to be in touch with others in the same boat.. PM me if you like, am always up for a chat about things, I have a generally positive outlook, so if you need cheering up a bit I will always try to help.

41 Replies

Hi

Sorry to hear you aren't feeling too good.

I was diagnosed with nafld in May 2016 and then Nash with fibrosis in November 2016!! I am now also being tested for autoimmune hepetitis! I advise you cook the majority off your meals from scratch. I think high protein, low fat. I have many other conditions which I'm sure you have too. Is that a Spitfire I see in the background?

My Dad loved aeroplanes especially World War 2.

I'm sure someone will be here soon to help you more than I can.

Please take care of yourself Lynne

ThreeSmiles profile image
ThreeSmiles in reply to

It is indeed a spit Lynne 😁👍. A Mk IX I reckon 😁 - yes, of course I cheated 😁. I love planes too but who can keep track of all the Mks - not I anyway!

in reply to ThreeSmiles

Dad definitely could. If there was a way film or a documentary on he would make sure that they were right!! Take care Lynne

in reply to

War not war!!!

in reply to

War not way!!, I'm losing it today!!

ThreeSmiles profile image
ThreeSmiles in reply to

Lol I read it as war without thinking Lynne 😁...mind you, me, thinking...hmmm

schirrosissufferer profile image
schirrosissufferer in reply to

well, its war on NAFLD and cirrhosis for me... Thanks for your reply and support!! if you need to chat, am here when I'm on, but am not always on the net..

in reply to

My dad was a sailor but he loved the airships as well. He took us to a show and a Lancaster flew over. It opened the bomb bay and dropped toffees! I felt sad for the aircraft, toffees? But better than bombs. My sister and I grabbed a toffee each.

Only 24 to choose from...but who’s counting!! 🤪🤪

Indeed. A lot of the Mks were indistinguishable because they were things like engine upgrades, etc. Also made in different factories where some would be asked to try out a tweak here and there. But I do believe Lynne’s dad would have been able to spot a lot of the differences, particularly because in some films the planes from the era being portrayed just weren’t available. And of course in later films radio controlled models may have been used! Yippee 😁

Well if my old instructor had been helping with the radio controlled ones, we’d have lost the Battle of Britain!!!

Pitt’s special s1a??

Lol!

No but I have got one of those! This is a model made from sheet foam bent and cut (cut - well there’s a surprise 😁) - not to be flown until the upper wing is made secure!

I better PM you so we don’t get told off for being off topic 👎🏻. Hang on!

Miles

in reply to ThreeSmiles

Very true, my Dad would have told you everything about it!!

This was the best one he loved football and could remember who the teams were in every FA Cup Final, who won and who scored!!!

Take care Lynne

ThreeSmiles profile image
ThreeSmiles in reply to

Fancy having a memory like that! I can’t even remember the score of my team’s last match that I only saw three weeks ago 👎🏻.

in reply to ThreeSmiles

😂 I'm no good on stuff like that but I'm usually pretty good at remembering dates just like my Mum could. Take care of yourself Lynne

in reply to

we'll be round your house to give you the bumps later. Happy Birthday Lynne xx

in reply to

😂 take care

in reply to

have you got cake? :-)

schirrosissufferer profile image
schirrosissufferer in reply to

Thanks for your support and reply, I do cook a lot from scratch and make batches which I freeze for the days I cant be bothered... yep, Low fat is the key.. but I have to watch my salt intake... I have an anaemia which demands more salts to produce red blood cells, and this which demands less... trying to win is difficult, but I hope not impossible... suffer a little from distension of the stomach from hoarding water with the salt, and more tiredness with lack of red blood cells if I dont have enough... these things were sent to try us...lol...

Hi schir - Martin.

Welcome to this fantastic forum 👍.

As Lynne says I hope someone will be here soon who can be more helpful than I. I had ALD and had a TP last year which has transformed my life, albeit with some issuettes which are being managed. I hope you can manage your symptoms too, even though I know what a struggle that is when you are in your situation - something one never forgets (except for those bits blanked out by HE 👎🏻☹️).

Good luck!

Miles

thanks for your support, from the sounds of it, I think I will fit in... seen lots of other historical planes since that one... and that was only in August... have seen another spit, (a supermarine), hurricane, Dakota... and and and... I live near an airport.. so thats a bonus...

That’s nice to see all those planes!

We live quite a way from EMA and a little local- ish airfield. Plus side is I can fly my planes here with only standard limitations 😁👍.

Miles

Morning,

Well welcome to the band of nutters. Hope

You fit right in.

Yeah it’s a weird old illness, but you have loads of guys and girls here who have various experiences to share. And laughs to have!! You are not alone.

A good diet is essential, although it can be difficult sometimes, and keep a watchful

Eye on your protein intake. Dietician advise is generally available and a damn good idea!!

Anyway, I feel the need, the need for speed!!!

Andy.

Hi Huggy, yes, diet is a funny thing... I have an anaemia, where I need to make 10 times the number of red blood cells just to keep up, they dont even take vitamines very well... so getting my diet right is a nightmare... salt is the worst, because the body doesnt like too much salt normally, but needs them for the red blood cell production, but the liver doesnt like too many.... (a headache and belly distension lol...)

Hi Sc you will get a lot of support on this forum and some good advice from all the people that are going through the same or similar problems with liver disease!

There is a good bunch of people who at almost anytime of the day or night that are willing to help out with advice or even just a chat!

I have been on this forum for over 4yrs on and off and had very useful advice on lots of occasions from lovely people.

It can be lonely at times when you don't want others to know too much about your personal health issues...but at least here we are all on the same rollercoaster and you can feel free to Express your feelings and concerns in private!

Thanks for that, much appreciated.. I am open to helping anyone who I can help, but I dont get on here often, again, thank's for the reply.

A couple of times I nearly closed my own account with cheques my body couldn't cash. (PBC fatigue.) If you haven't already, could you see a nutritionist? I don't think NHS provides and I wasn't helped by their dietician, it wasn't up to date advice. If you do so, you could check with your hepatologist for the go-ahead if supplements are advised. My fatigue, memory, etc are much improved.

schirrosissufferer profile image
schirrosissufferer in reply to

Thanks for your reply, I have had to do all the diet stuff myself... I have Spherocytosis as well, which means that my red blood cells die off 10 times quicker than normal... that, and my blood doesnt absorb vitamines very well... so it is a little more difficult, but I do cook most things from scratch, and make batches for the days I have no energy to cook... so am doing ok with that one... I think... all help and advice is much appreciated!!

Welcome It's hard sometimes to cope with this illness especially on ur own. I felt the tiredness was the worse and not feeling able to do normal everyday things. I had a transplant 5 months ago and still feel down some days but then I give myself a good talking to and appreciate the gift I got. I have a son and daughter who have been fantastic through this journey . This forum is fantastic by the way.

in reply to Steak

I'm with you about the tiredness and doing every day things. There's a limit to how much I can change the tiredness. But I can go quite far in not being upset about dust, laundry, dishes. :-) As long as I can prepare and eat food safely, and my bathroom is safe, it's good enough for me. Healing is a slow process, isn't it? We can't hurry it, and we don't need to. I hope you talk kindly and patiently to yourself. :-)

schirrosissufferer profile image
schirrosissufferer in reply to

Thanks, appreciated!! I can see dust... but yes, kitchen and bathroom clean... I vaccumed the car the other day, then fell asleep for a couple of hours afterwards... just doing normal things can be exhausting... but, its done now... will be a while before it gets done again, but one step at a time...

Many thanks, hope you start to feel better soon and that the transplant works well for you!!

Trust5 profile image
Trust5Administrator

Welcome to the forum. Your fellow forum users have already given you some good advice. If you haven't already seen our publications you might want to take a look at the following

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

regards

Just want to say thank you to all!! I dont get on the net every day, so sorry if anyone thought I have been ignoring anyone.. Yes, it was a Spitfire, but no, I dont know the Mk.. it was taken at Lytham 1940's weekend in August... got one of a Messerschmitt too... but who cares about that one...lol, again thank you for all of your replies its nice to know we are not alone in this, although it often feels like we are..

Hi. Just seen your post. I’ve just joined this group, having been given a diagnosis of cirrhosis (NAFLD) on December 9th.

Rotten, isn’t it? I’m still coming to terms with it, now trying to work out which of the fibromyalgia symptoms I have could actually be cirrhosis related (especially the fatigue) and trying to keep the anxiety at bay.

Your profile picture caught my eye (I see I’m not the only one! ☺️). My father flew Spitfires and was one of The Few. We get spits flying over occasionally and I can always tell by that distinctive, throaty sound as one heads my way. It’s one of two planes that actually bring a tear to my eye (Concorde was/is the other).

Hope your Christmas has been okay. All the best for the New Year. 😊

ThreeSmiles profile image
ThreeSmiles in reply to Aurora50

Sigh for a Merlin 👍

ThreeSmiles profile image
ThreeSmiles in reply to Aurora50

Cover your ears for an Olympus on reheat 😀👍

Aurora50 profile image
Aurora50 in reply to ThreeSmiles

I was one of the lucky ones - I flew on Concorde from JFK to Heathrow in May 2000. It was tiny, squashed inside, really small windows and eating the inflight meal was a lesson in keeping one’s elbows well tucked in! And it was the most glorious, emotionally-charged experience I’d had at that time. I absolutely loved it, loved watching the sky darken as we flew higher, was chuffed to get a certificate from the captain to confirm I’d flown high enough to be classed as an astronaut and was definitely up on Cloud 9. Of course, I still have the certificate somewhere, and a couple of other souvenirs. Nice mementoes.

When Concorde was withdrawn from service I was shattered. Still can’t quite believe such action was taken after an accident that was caused by runway debris and nothing whatsoever to do with the aircraft. I know it was expensive to fly - I guess the crash was a perfect excuse to ground this iconic aeroplane.

Having watched Concorde’s flight around the British coast back in the very early days and seen it flying into London over the years, its always had a special place in my heart. I still miss it.

ThreeSmiles profile image
ThreeSmiles in reply to Aurora50

Hi aurora - you are truly one of the lucky ones! 👍. So you were either rich or it was work - hehe don’t answer that one! You were literally on Cloud 9 - or maybe five times over Cloud 9 👍!

I was lucky too, thanks to work, I have sat in the pilot’s seat - man I thought it was uncomfortable- maybe I was just too big 😀!!

I too remember seeing it fly over our sports ground in London about in 1973 before it entered service - a super sight indeed 👍.

Aurora50 profile image
Aurora50 in reply to ThreeSmiles

Rich? Sadly, no, but I had a relative who was, who wanted company on a New York City week-long ‘pilgrimage’ to scatter her late husband's ashes. Bit macabre but I was a willing companion! 😉

Though I have a different liver condition, welcome to the group ......we are band of merry men & woman who try our best to help ( & make each other laugh !) ....I don't often post ....but thought I'd let you know you are never alone and there's always someone to offer support and a kind word. We don't always have the answers but we have the listening ear.

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