Log in
British Liver Trust
15,414 members โ€ข 7,638 posts

Fatty liver with Aih n reflux breathlessness

I have just been told I have fatty liver disease n I must change diet and exercise more well yesterday I started new year n all that, it's very hard to build up your steps when breathless but I managed first day to do. 5,301 n today 9,030 I'm very pleased with myself what I want to know is if I radically change my eating habits n exercise more what are the chances of getting rid of fatty liver I'm 61

88 Replies
oldest โ€ข newest

Hi Pusscat. Yes, if you eliminate alcohol from you life permenantly and high fat high sugar foods from your diet. Eat plenty of fresh fruit and veg, chicken and fish, continue with your exercise ....( brilliant start !) you will, lose weight, gain muscle and strength, heal your liver and feel wonderful !!

All the very best for a happy healthy new you this year xx

2 likes
Reply

Thankyou very much laura. No I don't drink any alcohol I have autoimmune hepititis but to be fair I've never liked alcohol that much so I suppose that's quite good lol. This is only day 3 but I feel a bit better already I'm very focused . Y did I not do this years ago. I had transverse myelitis at 42 and it took my left side meaning although I can walk I can't run jump skip the balance n power has gone . But I'm very positive person and I'm really enjoying this

1 like
Reply

Brilliant attitude.... keep it up, ๐Ÿ’ช๐Ÿ˜Ž๐Ÿ‘

Xx

Reply

Thankyou love

Reply

Transverse myelitis is a very rare condition, only 300 people a year diagnosed with it. My brother has it. I imagine your energy levels fluctuate and fatigue can hit you unexpectedly? I saw a new consultant on 5/12. He noted I had lost some weight but I wish he had seen me when I just had fatty liver! I am riddled with arthritis and firomialgia plus ME. so exercise is out! I got the 3rd fibroscan results and I now have cirrhosis. BUT, he stated if I go on a low carb diet, I will lose weight but also liver fat. We have all been fixated about animal fats, avoid at all costs. New research has shown that this is incorrect.Carbs are the enemy. I did lose weight a couple of times on Atkins, but the Keto diet is now recognised as the way to remove fat! A lot of fruits contain a mass of carbs, It took me a week to clear my home of everything high carb. Even baked beans and tomato soup from Heinz. It was hard at first, but 3 weeks on my weight has dropped 14lb! Some fluid in first week but a stone just the same. I have a freezer now full of meat including belly pork,fish and green veg. Eggs,cheese and proper Lurpak in my fridge. Fresh single cream for my coffee instead of milk. Tins of crab,salmon ,corn beef, in my cupboards. All low fat foods are laced with a lot of sugar! My dinner tonight will be 2 large lamb steaks, broccoli, cauli ,sliced green beans. With lurpak on and I added some goose fat to the lamb to keep it moist while cooking. I didnt stray over Christmas either. My family are so caring and didnt even eat their carb loaded deserts in front of me lol. My sweet tooth has gone, Who needs chips when you can have a large aberdeen angus sirloin, with green veg and fried mushrooms, some grated cheese on veg if you fancy? This diet also removes pre diabetes, reduces BP and will also remove fats in arteries. Berries are the lowest in carbs, raspberries with fresh cream for afters? If I can do it anyone can, You never feel hungry either which is the no 1 for diets failing. The consultant is a Professor, Head of the Liver Centre at Liverpool Royal. He said if I change to eating low carb, he expects me to still be around in 20 I want to see my granddaughter graduate, travel then make me a great Nan. The TM advise line is excellent my brother says, may be worth asking about this diet? I love food but love my family more Hazelx

Reply

Oh my word I haven't spoken to anyone with TM the diet sounds really good, how is your brother in himself it took my left side. Happened in 2000, I had to have physio for a long time was in wheelchair for a while. Then had a walking stick but before that a walker.it didn't affect my breathing luckily. But lots of burning sensations. Heavy legs like rubber, I was under a awful lot if stress before I got it. And had tonsillitis at the time . I'd love to know how he's getting on, I can honestly say I'm doing ok now and have been for few years but had to stop work as was diagnosed with post viral fatigue syndrome , haven't worked since

Reply

His was triggered after a fall on a roof at work. He has worked and studied all his life, but this has hit him sideways. Like you his feet and legs are affected, he has just been finished from his job, was there for 24.5 years. I contracted ME and Fibro from having Epstein Barr Virus and then 3 years later had a cytokine release from scripted meds. He was always empathetic towards me but he says he never imagined just how the fatigue floors you. I told him he has to learn the little word, that took me ages to grasp.- NO. It seems that people who dont have an off switch, like all 3 of us get pay back from our bodies. Your tonsillitis could well have been EBV? I had a good career, my job was kept open for 18 months but I just couldnt be relied on. When we have to sleep we have too. It is a long process getting TM diagnosed. He had his leg in plaster, then the other one, he wasnt accustomed to being crocked up. I have to keep reminding him too that he is now more susceptible to bugs. He is an electrical engineer, but liked to be hands on too. He did a full apprenticeship and then technicians. He got fed up of reps calling talking nonsense when he knew things they were suggesting would not work. He did his degree so he was then able to tell them in their language lol He was diagnosed but he couldnt be given a source of the cause. The fall is what brought it too a head, .Its scary just what can happen, I have read a lot about it as its not simple to explain. He became a granddad in 2017 and another due in March. He loves her to pieces, but I have to keep reminding him he has to ensure he gets the rest his body needs. Also to keep away if his granddaughter or anyone had a virus, infection or bug. He is trying to discover what causes his hip pain and severe groin pain. He has finally conceded that its now acceptable to wear lounge wear if he is not going out. lol My granddaughter is 15, her Mum and Dad wanted to start a family as soon as they married. They are all so supportive, its taken me a long time to accept help too. The stress on your legs from exercise doesnt sound good? If I need to sleep, I turn my phone off, Close my landline off in my computer unit, I am very fortunate that my closest friends and family understand.Sugar is one of the causes of inflamation, My psoriasis has calmed down some and Im hoping it will do the same for my joints. I will tell my brother about you, he doesnt know anyone either with TM. His employer sent him to their chosen consultan to assess if he should be back in work. Oh dear, they chose someone who knew exactly what TM was and her reply was priceless. His employers were cluless and his long service seemed to count for zip. His wife has just gone part time so they can enjoy their grandchildren and she can keep an eye on him. We were brought up to be workers, adjusting to being crocked up is hard. This diet has boosted my mind. . Glad I got to travel before I was flattened. Insurance is mega for liver disease. I will do short trips of 2 hours, hope Brexit doesnt affect our reciprocal health cover. Auschwitz in April. Homage to all those innocents who were murdered. Hazelx

Reply

I was tested for Ms for quite sone time that's what they suspected it could have been , I had all the tests out there. They also asked me if I had been bitten as I around 3 m before this all started I had been walking in woods . I was bitten I asked them why. And they said the would test for Lyme disease it came back negetive. I had an awful lot of burning sensation on left leg and arm. The heaviness was awful When it happened I remember it so well I was working two jobs and had sore throat which I had been told the day before it was tonsillitis. I was sitting down talking go my eldest son went to stand up n it was like the sensation of a zip going down your left side I collapsed . But I do remember two weeks before I was working and I experienced flashing lights in my vision n I felt disorientated. I went home from work with a bad head. I don't suffer from headaches at all. I've probably had 10 in my life, and not migraines. I don't know whether this was linked to the start of TM. Also if I had a shower I couldn't feel the warm water at all on left leg or arm but it was the correct temp on my right side. Few days before it happened I had a deep pain in lower back half way across. And for a very long time I was experiencing what can only be described as electric shock pains in that area and down left leg so I wore a tens machine. I don't know whether your brother has experienced this

Reply

My friend has fibromygelia n lyme she's actually trying the keto diet funnily enough. That's so impressive to drop 14 pounds in 3 weeks wow. Thankyou so much for the information that's so kind of you hazel

1 like
Reply

Gj ๐Ÿ˜ธ - U may b 61 bt ur stil yng at ๐Ÿ’—. Nw gt ur ๐Ÿง  n gear n gt ๐Ÿƒโ€โ™€๏ธ n ๐Ÿคธโ€โ™€๏ธ n ๐ŸŠโ€โ™€๏ธ

Gj on ๐Ÿ‘ฃ wd

๐Ÿ‡ง๐Ÿ‡ง

1 like
Reply

Apologies, typing error!!!! My earlier email mssed out DONT give up the excellent work achieved !!!!! So sorry, i never noticed until I pressed send!!!

Reply

Haha I knew what you meant. Ru in uk

Reply

hilarious I'd just logged off and saw your second email! Yes I live in the UK! Shropshire

Reply

Little way from me then I'm just outside london

Reply

London's not far away! It's in the UK! I'm used to driving all over the UK with my profession but retired in August! I'm now considering working again but want to know exactly whats wrong with me first!

Healthy life style is at the top of the list! Do you have lots of weight to loose?

Reply

Yes I think I do have lots of weight to lose as I'm 5.7half n weigh 14.3 I want to be 11.3 so three stone. Yes I had to give up work due to health problems I'd love to get back to better health and get a job again . Bet you miss your job

Reply

Hi

Yes do miss my job and my small company!

When I put my mind to things I normally achieve them with a battle but I do get there so I'm here for you and anyone else!

Reply

Thankyou . Yes it's good to keep focusing on new things and remaining positive. Keep going and battling on . This is a fantastic forum I've never been on one before it's so good to know we can all help each other on our journeys

1 like
Reply

Sadly I can't run etc if you read the above post I have explained. But do you know what I'm going to do this walking n I'm going to get as healthy as I can, I'm so focused I've suprised myself lol

1 like
Reply

Hi pussycat - sorry - we obviously donโ€™t share the same SOH. But my SOH is a bit off the wall, I know.

However, seriously, good luck with getting healthy again.

๐Ÿ‡ง๐Ÿ‡ง

Reply

No I'm not offended by your post at all haha it's hard when you are reading posts , I totally agree it's good to run n swim but unfortunately I had my left side affected when I got transverse myelitis at age 42 it's taken my ability to run or rush so my balance is not as good as it was before it all happened. Swimming is fantastic though I will certainly start swimming when I get myself fitter n build strength. I think we probably do share same sense of humour, I'm always laughing despite all my health problems. You have to keep positive

1 like
Reply

Hi Pussycat

Firstly congratulations on the exercise achieved ! Don't give up the excellent work as I know you'll start to feel much better.

I'm a 66 female and until 4 weeks ago I went to the gym almost daily and felt amazing! At the same time I was eating healthly and lost a stone and half in three months.

I'm being told I may have PBC due to my symptoms and blood tests but on the 23rd of Jan Im having a fibroscan to test for fatty liver and an MRI of my bile duct.

The last three weeks I've not been to the gym and my heathly eating has stopped due to going on holiday then Christmas and eating out with friends whom Ive not seen for ages. In other words Christmas beinge won't finish until this Saturday when I get back home and back to the gym.

Ive gained half a stone and all my symptoms are creeping back due to my own fault!

Please dont give up your healthy eating and gym routiine and you will be amazed how well you will feel. Ive read that your lately that your liver can recover if it's not to badly damaged by an un healthy life style!

Good luck my friend and should you wish to keep in touch for support then please do! I will keep you updated on my progress too if you like.

Take care and Happy New Year

Regards Slaines

1 like
Reply

I would love to keep in touch, I'm going to do this.i was told last week I have fatty liver n a mass in my liver the breathlessness is ridiculous. Yes I ate rubbish I'm not going to deny this, I have bad reflux too. I'm on steriods n azathriprine n have underactive thyroid too n myelitis I'm a bit of a lost cause oh n gastritis, I have autoimmune hepititis .im non smoker n drinker but I did go crazy eating choc sweets cakes you name it. I'm not perfect but suddenly when dr told me I must lose weight change eating habits. It was like something switched in my brain. And I thought what am I doing to myself. So I started 3 days ago to try and sort my lifestyle out

1 like
Reply

Hi again

I know exactly what your saying! Im a non smoker and non drinker too!

For many years Ive suffered with oains ubder my right rib and in my back. In 2016 i had my gallbladder removed, ive had Plication of my abdomen wall after investigations and still the discomfort is there. I too have reflux issues but this went away after the healthy life style.

I weigh 12.4lb. Height 5.4 so I really should be around 10 stone or less for my age! Im determined to get fit again when I get home from Yorkshire!

Im really glad you want to keep in touch. Write soon

Regards Slaines

Reply

You are quite similar to me. I'm on omperazole I've been having intense pain but on left side above and around left rib into back n up between shoulder blades but it wasn't until I had abdominal ultrasound that when liver was scanned I could have yelled yet didn't feel pain there at all. I weigh 14.3 not good I'm chubster I'm 5.7 half don't forget the half !! On steriods I'm so pleased you said reflux went away with healthy eating as I have lump in throat n pain and so much mucus in throat, so hopefully my new lifestyle will get rid. And my breathing will be better . I'd love to lose 3 stone. I'd feel as if I'd won the lottery if I lost that, lol

Reply

Hi again

I know about the pain on your left side! I too have that which I've put down to small cysts in both kidneys which I think bust occassionally causing infection!

Also since 1994 Ive had bladder infections causing me to have to bladder stretch operations after which I was perscribed amoxicillin tables to be taken daily!!!! In July this year a routine blood test highlighted this further issue with my liver which I could have had for years as the symptoms of PBC dont occur for 10 years...

Anyway, lets get fit! Dont worry about being 14 stone odd. Aim for losing 8 pounds a month. Eat lots of fish chicken and veg! I can send you recipes if you like as cooking is a hobby! I know naughty cooking too but this Im avoiding from this coming Saturday! Drink water and a glass of craberry juice from Aldi! The lite one as its only 59 pence and it has more concentrate than any of the expensive brands plus it tastes good from the fridge.

Stay away from Asda, Morrison and Aldi's 30 per cent less sugar. Go for Aldi lite!!!! 25 or 27 per cent concentrate!!! Excellent

Reply

I've never had a bladder infection I bet that was painful. I'm allergic to amoxicillin having found that out when had glandular fever at 16 .i don't have any knowledge of Pbc I think it's to do with the liver isn't it similar probably to my autoimmune hepititis I was diagnosed with that 11 years ago, yet my specialist said after seeing my liver biopsy I've probably had it since teenager. But I don't really understand how it was never picked up, but it wasn't . I hate cooking but be lovely to get some recipes to try. Lol I must make myself enjoy cooking , yes I'm writing everything down that I eat. I've stopped de caffeinated coffee as have stomach pains after it, but I sip water all day till go to bed. I will look into getting the cranberry juice from aldi thankyou .

Reply

Hi Pussycat

Hope your day has gone well and you've managed another successful day at the gym! I'm looking forward to returning home Saturday and with a bit of luck I may have time for an hour at the gym ! Sunday will be my target day for the restart of healthy eating/getting fit to get my liver working better!

Finally, thanks to everyone for your comments and support!

Nghty nite everyone!

Reply

No I don't go to the gym I'm afraid I just walk to feel better I'm really enjoying it and raring to go tomorrow lol my eating is coming along ok I must admit it's the night time the worst when I'm watching tele but I just go n grab 10 cal jelly lol I'm not finding it too hard at the moment. But early days

Reply

Hi

Do you like spicy food or mint yogart or chilli dips as I find dipping sliced carrot, cucumber or celery into some kind of hot or tasty yogurt dip takes my craving for sweet things away! Sometimes I eat a handful of almonds as the texture satisfies another craving! I have been known to dip almonds in a teaspoon of chilli dip and wow that did the trick.

Potato Peelings don't throw in the bin! Place on baking tray spray with low cal oil, sprinkle with black pepper or chilli powered and small amount of salt if you must then bake in a hot oven for about 15 to twenty minutes until crispy. There great for dipping in yogart dip or just for nibbling.

You must dry with tea towel after washing with cold water before placing flat on baking tray. Try not to pile on top of each other.

Also strips of baked chicken breast are good for dipping too and very filling! For me food is all about taste!!!!! There doesnt have to be loads just tasty !!!

Reply

Thanks for that. Nope I can't have spicy foods of any kind it sends my reflux pain into overdrive . But yes I could do the potato peelings with black pepper that's a good one. I'm eating quite blandly so it dosent worsen my symptoms.

Reply

I meant to ask everyone! I wear contact lenses and have done for about 30 years I guess. Im finding that my eyes are feeling very dry causing problems with my lenses. My mouth in the morning feels raw too until I've cleaned my teeth. I also have on and off muscels pains in my legs and arms and feet ache too. Itchy skin now and then which is a pain when it comes on, mainly at night. Does anyone else have similar symptoms with liver issues?

Reply

My mouth is dry has been for several years but I've never suffered from itching at all I get cramp though always left leg but that I think is to do with transverse myelitis from years ago

Reply

Hi

Sorry did'nt realise you could'nt do gym! Walking of any kind I know is great too plus if your outside getting fresh air is a bonus!

You mentioned swimming, unfortubately for me I'm a very weak swimmer but would love to start again and maybe have lessons.

The pains in my legs and back Im not sure if there liver related or related to me spending 2 years in hospital strapped in traction to a bed for 18 months with a TB hip at the age of 7 to 9! I was told I would never play any sports which was like waving a red rag to a bull! I took up playing tennis, martial arts for three years then had to give that up due to damaging my elbows! I then went to the gym 7 days a week and my weight then was 7 to 8 stone and extremly fit. The gym was my life when being told a No to exercise back in the 50's..... I do visit a chiropractor now and then but find stretching daily helps more. However this is excess weight is not good and Im going to take a leaf from others and eat heathly from Saturday onwards. Will keep you all updated on my progress if you are interested?

Reply

No don't worry , when I say swimming it's me thinking in the future I would like to swim, I haven't been swimming for over 50 years lol but I thinking right I will do one thing at a time build up strength my strength is zero so is my energy due to this breathlessness n nausea I have every single day 24/7. So I'm intending to keep up this healthy eating it's going to be a way of life for me and so is exercise, I don't want to give myself targets as if I don't get there I will be upset. So I'm taking one day at a time of doing my utmost best, trying to curb this nausea as I find it hard to concentrate . Even if I'm thinking I can't do this, I will try, today is really bad with breathlessness n nausea. Yesterday I had it as I do everyday but today is more debilitating

Reply

So sorry about not understanding your breathlessness, it must really hard for you ! I now understand you taking one day at a time! May I say well done so far with your walking! Every few steps is a great achievement! The nausea side of things must be a horrid feeling for you as I get it badly when eating incorrect food and then spend ages with my head down the loo followed by a day or so in bed! Rich food like cream or oil sets me off ! I cannot eat brocolli or cauliflower which I love as it sets my IBS off and my stomach swells out like a solid balloon! I can eat most veg but only found out last week about the brocolli etc upsetting my abdomen!

Take care my friend! Hope tomorrow is a better day for you!

You might want to try drinking hot ginger as it may help with the nausea! I buy stem ginger which I chop up and add hot water . You can also buy ginger cordial from Asda ,Morrisons or Tesco's. I drnk both as I cannot drink tea or coffee. X

Reply

I. Never sick it's the extreme nausea in the stomach rising up n the breathlessness I've never tried ginger cordial but it's worth trying something. I even wear bands that go round your wrist as meant to press on pressure points to relieve sick feeling but no don't work, I willing to try literally anything, I walked 15 min walk this afternoon just to get bit of exercise decided to go to same chemist where I weighed myself monday I was 91kg Monday I'm now 90kg I know it's only water loss but I'm so happy something's happening x

Reply

Wow on the kilo drop! Water or whatever loss its still a kilo of weight off from your body! Think of it as not carryying a bag of sugar around!! Well done! I do eat a fair amount of ginger in any form as its a nausea anti sickness remedy which you can read about on the web!

Tomorrow heading home to Shropshire so won't be online much throughout the day! Take care x

Reply

That's what my husband said. It's good. I will try ginger thankyou and safe journey home

Reply

Hi Slaine

Sorry I donโ€™t get your 6th para? Was that a joke or have

I misunderstood - give up all healthy things and you will feel better?

๐Ÿ‡ง๐Ÿ‡ง

Reply

Hi

Error! I did re send another note stating error! It should have read NOT to give up healthy eating!

Reply

Aha did you know you can edit post by selecting โ€œMoreโ€ then โ€œEditโ€! I have to do it all the time ๐Ÿ˜.

But thanks!

Reply

Hi PiloMilo

Again thank you on how to edit errors! Much appreciated!

Reply

Hi

Cheers again for note on editing errors! Hopefully all sorted but apologies if I've missed any!

Slaines is my nickname choosen from the ruined Slaines Castle in Aberdeenshire which is situated on the cliff edge of Cruden Bay! For many years I used to sit there alone and when my son was born we both sat and watched and listened to the raw of the northern sea waves crashing on the rocks! I love it there!

Reply

Hi again ๐Ÿ˜

You are lucky indeed with respect to where you live! Sounds lovely ๐Ÿ˜. Iโ€™m a sea lover as well, having been brought up in Barbados (the Rock) and Antigua (365 beaches ๐Ÿ˜) so it is very ironic (right word?) that Iโ€™ve lived in the middle of England - in Derby - for 43 years ๐Ÿ˜๐Ÿ˜๐Ÿ˜

Miles

๐Ÿ‡ง๐Ÿ‡ง

Reply

Derby! An hour from myself which I shall be driving through tomorrow! My daughter went to Derby University for three years, Senior Design Manager for M&S before moving to New Zealand for three years. I must ask why Derby after such amazing places???

I too love and adore the sea and its coastlines. I only moved back to Shropshire 22 months ago after living right by the sea for 18 years ! 11 miles south of Hornsea on the east coast! We had the use of a private beach which I now miss.

I cannot moan as I now live in a beautiful quite village just outside Telford and only 13 miles from Shrewsbury, however i still miss the rawing sea!

Thank you for your lovely correspondence! Good night from me and to all readers!

Reply

Did your daughter com e back to UK after the 3 years? New Zealand is a place Iโ€™d definitely like to go to. If I had a bucket list - I donโ€™t because for me I think it would be tempting fate ๐Ÿ˜ - it would be on it! Have to go by boat though coz canโ€™t trust my stomach on long plane flights - not that Iโ€™ve done one for 5 years โ˜น๏ธ. A long plane flight that is ๐Ÿ˜.

Derby because when I was young used to fly on these twin engine turboprop aircraft between the islands and there was that beautiful silver RR logo. That was for me - I wanted some of that! And of course RR started in Derby ๐Ÿ˜. Simples...

Hope you had your good nights sleep!

Miles

๐Ÿ‡ง๐Ÿ‡ง

Reply

Oh dear

I have upset others I think by not talking about my medical issues all the time. I personally think getting to know others more also helps to openly talk about your medical symptoms to each other in more detail.

Last night was not so good for me, pains in my back and right side under my ribs which is there most of the time! I'm keeping my fingers crossed Im not diagnosed with PRimary Bilary Cirrohsis as theres no cure just medication fittness and a healthy diet. Talking to you and Pussycat helps!

My daughter is back in the UK and is now married.

I love the sea but unfortunately do not have sea legs which is a shame! Hopefully your bucket list dream will come true. Mine is to have a we cottage with a seaview of the beach to walk along !

Bye for now!

Hope Pussycat had a good day yesterday ?

Reply

Hey up chuck

If ANYONE criticises non medical chat just ignore them and donโ€™t read or respond to their posts. Just recently an exceptionally nice nurse st the hospital told me that getting to know their patients was an integral part of the recovery process, she just wished that sometimes they had more time to do it. So ignore the noonaahs!

Aha now which did she prefer UK or NZ?

Your dream sounds great. Who knows, might happen, we can all dream, isnโ€™t that what keeps us going sometimes? ๐Ÿ˜๐Ÿ‘

All the best

Miles

๐Ÿ‡ง๐Ÿ‡ง

Reply

Hi Miles

Thank you for such a lovely reply! You cheered me up! I will take your advice and take no notice of others!

My dream to end my days by sea would require me winning the lottery which I hardly ever do but I'm good in the business and construction world so may do a little more dabbling posdibly in that sector as I'm a young looking 66 with a good head when I put my mind to it! I'm a construction project management consultant by trade, designing and building smallish building projects all over the UK! Lots in Scotland!

Anyway less of that chat!

My daughter loved NZ to the UK and will possibly go back in the future!

Oh well must leave you to travel home! I'm stopping off to see friends on the way.

Cheers again ๐Ÿ˜‰

Reply

Thanks Slaines

Never mind less of the chat - more of the chat!!

So can you still work? Sounds good but too much stress for my liking! Iโ€™ve put my name down for this volunteer help the NHS thingy. Iโ€™d love to drive the hospital buggies about. ( Canโ€™t stand up being still for more than about 10 minutes, but can walk for 15 mins max ๐Ÿ˜๐Ÿ‘ - major improvement for me). And I have been told I can drive again after 9 months not being allowed to! Yippee itโ€™s greeeaaatt.

Have fun at home

Miles

Reply

Hi Miles

I'm now writing from the car whilst my other half is doing all the driving!

Yes I'm still able to work if I wish too as I only retired in August ! I like to be on the go most of the time! I too have been considering volunteering at my local hospital in Telford! Love your idea of driving a buggy! Could be great fun!

Until I see the liver consultant again in March I'm not fully sure if my liver symptoms maybe in the early stages or could be over 10 years old! The symptoms for PBC only raise themselves after 10 years of having the disease!

You sound like you have a very strong and focused attitude to life which I respect as I'm similar in some ways! However I do love to cook and read on occasions.

Tomorrow I'm looking to register for a first aid course plus resit my level 2 food and hygiene course as my previous certificate ran out a year ago! I can then cook food to sell on or turn my dining room into a small private restaurant for 6! I love to socialise and entertain too!

You mentioned about being able to drive in 9 months! I've not read your medical history as yet! Can I ask what are your health problems as I'd like to understand your fight better. The 9 months will soon fly by !

Staines

Reply

Hi Miles

Are you ok? Just checking nothing has happened to you?

Regards Slaines

Reply

Hi slaines - sorry I only just got the notification email โ˜น๏ธ

Iโ€™m really good, thank you, all things considered ๐Ÿ˜. Oh goodness you donโ€™t want me to tell you all my health issues surely ๐Ÿ˜. Iโ€™ll just say the main two things.

Had a transplant at end of August just like the great man Alfred ๐Ÿ˜๐Ÿ˜. Like everyone else who has been through it (or most people I hope) it has given me the most wonderful lift in life one could imagine. Apart from the phenomenal health benefits personality has sort of changed. It used to be I was quite reticent, but now Iโ€™ll yap to anyone, anywhere ๐Ÿ˜. Itโ€™s great but annoys wife ๐Ÿ˜.

On the other half of my half FULL glass is the fact that I canโ€™t have the operation on my back to relieve the ongoing pain. That has to wait another 8 months... along with the hernia operation, but can have the cateract operation in March. Yippee ๐Ÿ‘.

There are other more trivial ongoing issuettes! ๐Ÿ˜ god what a bore I am. Feel free to agree please do. When our daughter was younger she called me a boring old fart ๐Ÿ˜. I knew she was right hehe but I wasnโ€™t about to agree!

Sorry must have written the bit about not being able to drive badly! I meant to say am now able to drive but I was not allowed to for about 10 months.

Hobbies -used to read but now cannot take it in!

Fly radio controlled planes. I use the word fly loosely!๐Ÿ˜ Do up Scalextric cars to sell on eBay. I have been told by you can guess, to get rid of them all. Started but still got about 1000! to go. Lol.

So thatโ€™s an abbreviated me ๐Ÿ˜. Et toi?

Au revoir mon ami

Miles

๐Ÿ‡ง๐Ÿ‡ง

1 like
Reply

Well Miles, I must say I adore reading your notes! Your out look on life considering what you've been through is an achievement all on its own and your still suffering with awful back pain too! Your determination to fight back is wonderful, so much so you give me hope for whatever lies ahead I too will kick arse! Sorry for swearing!

As I'm writing my husband has the Billy Connolly on the TV who's one of my favourite comedian ever! I love his humour and his fight against Parkinson's disease and prostrate cancer! I've watched him live on numerous occasions and the last was in 2017 at the Apollo with my family! As usual he wa hilarious!

My goodness 1000 cars/planes! You must have a massive workshop or have you over taken all your bedrooms/bathrooms etc! Lol

Fantastic hobby !,My ex husband back in the 70's/80's did up vintage cars which I loved to get involved with! Back then I did a lot of restoring body works or got lumped with rubbing down old chassis! My ex was a perfectionist as the finished vintage/classic cars were a delight to ride around in afterwards.

The completed paintwork you could not fault! Some cars had as much as 6 to 10 coats of paint after rubbing out any inperfections until they looked like mirrors! Lol.

Oh well this is all from me for tonight. Take care my friend!

Regards Slaines

Reply

Slaines - I just think the tp has just made me have a different outlook than I used to have ๐Ÿ˜. But thanks for your very kind words!

I like BC as well, particularly the series when he went round Australia. Unfortunately my wife doesnโ€™t share my views on him so I donโ€™t get to watch him often these days. But hey ho ๐Ÿ˜

I love vintage cars but I havenโ€™t had a great deal of success with the ONE I actually bought. It was a mistake to buy it and expect it to be main mode of transport. Head in clouds - cโ€™est moi.

I canโ€™t remember your history - if I ever saw it / if you ever said it? Of course you donโ€™t have to say owt!!

Well I wish you good luck Slaines ๐Ÿ˜

Miles

๐Ÿ‡ง๐Ÿ‡ง

Reply

Hey up again Slaines

Aha I have just seen your โ€œissuesโ€ on another thread. So in investigative stage then? Oh itโ€™s such a long road sometimes- was for me anyway - 3 1/2 years. But we are all different and all see different specialists and boy oh boy they donโ€™t all sing from the same hymn sheet!

Milo

Reply

Hi again,

In reply to your question, yes, I'm at the investigation stage which has been going on for only 6 months covering my liver, however my doctor in Yorkshire said I had issues with liver blood tests years ago and asked me on two ocassions if I drank a lot to which I said no! Unfortunately I come from a family and ex husband who liked to drink and became abusive, so I hardly ever touch the stuff. I do however have one G&T maybe once a month. However since this liver investigation that one has stopped too!

For the last 24 months I've had 2 CT Scans of my abdomen and pelvis which highlighted small frowth in my lungs and cysts in my kidneys which I'm not concerned about as such. Gallbladder was removed 2 years ago due to similar pains I'm still having.

I've been rushed into hospital nunerous times with ongoing water infections since 1994 followed by two small operations. After each op was on permanent antibotics daily! I took myself off them last June!

For around three months I'd been biking around 15 to 23 kilometers a day a the gym and started feeling unwell again. I saw the doc and was given a full MOT again! 2 ECG's , blood tests, ultrasounds, CT, colnoscopy, cystoscopy two weeks ago.

All if my 6 months blood tests came back with high GGT and AMA readings. August's blood test report referred to Weak/Positive for PBC for which I'm being investigated for! On the 23rd Im having a fibroscan . Once the consultant has the full blood test results and scan results they want to carry out an MRI of my bile duct because of on and off issues in this area plus the discomfort under my right ribs and left plus in my back. Other than the above I'm fine and try my best to get on with life ubtil I know otherwise. I've had my fare share of hospital when I was 7 until 9 . I was strapped to a bed with iron bars down my legs to stretch them. Sticky plaster wrapped around each leg. My neck was strapped to and my bed elevated so my feet were in the air! . I learnt to eat by a mirror over my head! I guess in the 50's when TB was very serious this was how they treated patients !!! The fun part was learning to walk again which took around 6 months. I also lost 2 years of schooling which would'nt happen these days. Anyway , please dont feel sorry for me as I'm tough as hell and have risen to the top all on my own. I did class myself as fairly fit but slightly over weight until this came to light. If I'm diagnosed with PBC then thats life! - I bet now you'd not asked ....... or have I bored you to death......

Sorry to hear you cannot watch BC - he always makes me laugh! I too watched his Aussie venture too!

Well nighty nite ! Maybe catch you tomorrow if you still want to chat!

Slaines

Reply

Slaines - cmon, how can one not feel sorry for you? Youโ€™ve had it very tough and still having it tough....

Had to look up NHS description of PBC. Itโ€™s incredible the various things that can cause liver damage. But I really havenโ€™t a clue about medical things (never even did Biology at school ๐Ÿ˜) except what I have been through.

Seems like PBC can get worse very gradually. Looks like thatโ€™s happening with you?

When young your story sounds a bit like Forrest Gump ๐Ÿ˜...so I expect you to be up and running soon! Have you had to give up your cycling then? I rejoined the gym yesterday which I had to leave when it got to the point I could hardly walk pre TP. I hope Iโ€™ll be able to do something even if itโ€™s just walking. It gets me out of house otherwise I donโ€™t get a great deal of opportunity to do that. Luckily our ex Cow Shed is attached to our daughterโ€™s house and she has 5 children so we see a lot of them, including babysitting and driving them about. They all do sports so itโ€™s a juggling act all week long. They are 15, 13, 11, 9 and then something happened ๐Ÿ˜, 5 lol.

Oh well I ought to think about sleep but doesnโ€™t often happen before 0100 then up about 0300 to 0430 then sleep again if lucky. It is deffo getting better now though since Iโ€™ve dropped steroids etc.

Hope when you read this......

Good morning, hope you had a great nightโ€™s sleep ๐Ÿ˜๐Ÿ˜๐Ÿ˜

Miles

Reply

Wow Miles, you are more active than I thought after a transplant! Go Miles Go!

My TB has been cured as far as I'm aware but I do on he odd occasions suffer with a different type of pain to that of my liver in my back neck or legs which my chiropractor sorts . I'd rather pay him instead of me running to the docs which I try to avoid seeing if possible. I was seeing the chirpractor monthly but have now found a different exercise which has almost stopped those pains. I do love going to the gym to bike and lift weights to strenthen my muscels without hopefully doing any damage. Unfortunately I've not had time over the Christmas period which for me only ended yesterday so today back to kicking arse for 1 to 2 hours. Again sorry for swearing.

I cannot beleave how many grand children you have plus all that running about! I have one grand daughter aged 5 who lives a couple of miles away. Tuesdays I collect her from school and entertain her until mum and dad arrive home. The schools hols are fun as she loves to stay with me. I like turning my small dining room into a den with fairly lights and all that stuff. Last time I built a den which we slept, eat and played games together under when not at the cinema or both sliding down a 30 foot high slide together at Jungle land togetger. 30 odd years ago I did a little registered child minding and looked after 11 kids! I love to see a child happy!

Your ex cow shed I bet is an amazing place with all those remote controlled planes and cars! Did you ever learn to fly yourself? My husband took up flying in Yorkshire for about 12 months then unfortunately for no reason gave it up! Shame really as it was lovely to watch him fly!

I'm guessing your a retired farmer or have I got that wrong!

Before I forget to say, good luck at the gym today even if you only manage 15 minutes or less. It took me ages to build upto an hour plus! Lucky for me my gym has tv's on some of the equipment to plug my earphones into, so I normally watch cookery programmes or some comedy which makes the time fly by whilst my legs are peddling away....

Sorry to read your up most nights so often which I jnow is a pain! Me I'm normally up around 4.30 to 5ish. Sometimes I try my best to sleep again but most times I end up sitting in the lounge on my ipad to avoid waking my husband up! Today Im writing from bed.... lol

Oh well, may I wish you a pleasant dayas its time to get ready for the gym!

Take care

Slaines

Reply

Hi Miles

Well my first morning trip back to the gym done! 1.5 hours of biking

achieved whilst chatting to a friend biking besides me who has tumors behind her knees who's in terrible pain, but she keeps plodding away. The doctors have operated before on others growths which have returned. She 's only 50 years of age with two teenager lads and she works part time at the main hospital ! Shed rather keep fit even with the pain then sit about feeling sorry for herself. I'm meeting her again tomorrow !

Anyway, I called into the doctors on my way home to update my medical file/GP via the receptionist of my forthcoming fibroscan appointment on the 23rd and possible MRI of my bile duct! As Im not seeing the consultant again until the 19th of March I wanted to know if my GP still wants further monthly blood tests to be carried out until the 19th. So back to the hospital tomorrow after the gym!!

This must be something your used too?

When I arrived home from the gym I saw on Facebook that one of my other friends had been rushed into hospital yesterday with a second food allergy attack . The first almost killed her and it took over 2 weeks in hospital to recover. She's a veggie and out of the blue became allergic to nuts after years of eating them as her main source of food! NUTS no more. She's now allergic to parsnip skins!!!! Errrrr! Anyway, Ive just arrived back from a 25 mile round trip to see her! Im glad to say the hospital sorted her out very quickly this time, however her face is still swollen! What a morning So far!!!!!

How's your day going so far????

Slaines

Reply

Hi I'm back lol woke up this morning though right I have a plan more water water water. And I don't mean Sea. So I'm going to try n drink one litre a day. I'm sure you should do this anyway. So I've started. Hope I finish lol, will be trying to walk further today after lunch. Still breathless but I'm going for it today. Hope you are feeling bit better, also never worry about what others say. I certainly don't! If you want to talk about other issues that's how you get to know about other ppl it's not as if you are never going to mention how you are feeling is it, at my worst I used a tens machine that I could turn up the volume so to speak. When I had my electric shock pains with TM . I used to wear it on back of my belt . Maybe you could try one. Or find out if anyone could wear one, hope you have a good day n I will check back tonight when I've done some walking

Reply

Hi again Pussycat

First, I'm guessing your a cat lover with a nickname like yours! I too love both cats and dogs!

With regards to my pains, they are worse at night when I lye down! The day time discomfort I can cope with as I've had it on and off for years hence the various operations to remove my gallbladder and investigations into my abdomen!

I'm hoping these on going investigations will confirm what is exactly wrong but in the meantime I'm plodding on.

The Lorra of water a day is great but I find it hard to keep up unless you have various glasses around the place which you can keep sipping from until each is empty! I have to add flavour but not sugar! Lemon or cucumber makes it pleasant to drink. Ginger as I said before should help with your nausea and hopefully breathening. When I get home I'll look at my herbal books to see whether there's any herb you can take to help with your breathening !

Take care and catch you later x

Reply

Thanks so much for that . Oh yes I'm a huge cat lover my cats are our world I will in fact put one of them on my avatar they are much better looking than me lol I like drinking water but don't think I drink enough only thing is I'm in the toilet every 40 mins. So I have to walk where I know I can find toilet . How do ppl that drink a litre of water not want to keep going yo the toilet. Maybe the body gets used to it. My reflux is worse too when I lay down, but I do sleep well so can't complain. My gallbladder is less than have the size it should be. Hence my post in small gallbladder god knows what has caused it to shrink, or was it always small goodness knows. I only knew when asked for my ultrasound report . Otherwise I wouldn't have known. I had a ultra sound around year ago before the very recent one n she said oh I can't find your gallbladder have you had it out. No I said I def haven't maybe it's behind all the fat . Anyway she couldn't see it. But the latest scan was just before xmas and that's when I read about it

Reply

Hi Pussycat

How's your day going? Did you manage to drink the litre of water yesterday?

Today I'm struggling to get focused! I did plan to go to the gym but so far catching up on things around the house and trying my best to drink more water like you!

I do think about you and Pilomilo

Regards Slaines

Reply

Well yesterday I only managed to drink 4 . You know the costa clear mugs with handles . But today I'm on my 5th and it's only 430 but to be honest I don't think I will hit more than 6 today. I will have to buy myself a litre bottle and just see how much water is held in my costa cups against the litre bottle. Goodness knows how people drink so much. I feel as if I'm drowning , when I walk I can hear water swishing lol I'm not joking I'm in an out the toilet every hour lol I'm doing ok with the food side. The walking I've only managed just over 3,000 but hey it's a marathon not a sprint for me

Reply

Hi ๐Ÿ˜บ and Slaines

Hate to say this but post tp I was told to drink at least 2 and a half litres of water a day...

But keep going 1 litre is a start at least!

Good luck

Miles

Reply

That's me out then ๐Ÿ˜ฉ

Reply

No no no pussycat youโ€™re dong great. Keep it up! I didnโ€™t want to get you worried - think I was only boasting ๐Ÿ˜ plus Iโ€™m 6โ€™ 2โ€ and weigh in at 93 kg - bet you donโ€™t ๐Ÿ˜

Miles

Reply

๐Ÿ˜‚๐Ÿ˜‚ I'm never going to drink that amount and I was 91kg last week I'm 90kg now but I'm not 6.ft 2 inches I'm a measley 5 ft 7 half, used to be 5.8 years ago ๐Ÿ˜ฉ I'm on steriods but that doesn't excuse my weight gain I was a piggy eating all the crap after my mum died I just went crazy with the eating and here I am this chubster. Several years later given myself fatty liver. N reflux. But I'm going to do it, I'm very positive person, it's hard though

Reply

Pussycat

I was over 17 stone (111kg) before I got really ill!

What I was trying to say was that given your height you will not (i doibt vey much) be expected to drink as much as me, and Iโ€™m a man (supposedly - may be a man but a big coward when it comes to medical things and do not mention the dentist ๐Ÿ˜).

You obviously will do it, Iโ€™m sure!

Miles

Reply

You are really going to laugh, oh I'm so silly for some reason I thought the big bottle of water you buy at supermarket was 1 litre. So in my head I was trying to gauge how many glasses of water to drink to drink the equivalent . So I thought oh maybe 7 so that's what I did. Feeling that I'd drunk the Pacific Ocean. My stomach gurgling n swishing when I walked. Then today I saw a litre bottle of water than to me wasn't a lot of water bought it brought it home. And decided to measure my 7 glasses I was drinking into this well I laughed so much when I realised 3 of my glasses were 1 litre so I have been drinking over two litres of water for the last few days n had no idea. Result julie is doing this ere thing properly ! ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ‘

Reply

Hey great job julie. ๐Ÿ˜. How many litres of petrol does it take to fill your car - 4? .........(joke) ๐Ÿ˜

Miles

Reply

That's so true

1 like
Reply

Oh goodness I can't stand the dentist . Although a lovely man

1 like
Reply

Well then Pussycat, whats your final water intake for yesterday? I bet you reached 5 or 6 glasses? Can I ask do you feel any slight improvements in your health . I know its only been almost a week or is it a week since you started your fight to feel a bit better slowly?

Im just starting my third glass of water today as I struggle too! I'm blummin usless at times! As you've probably read I don't give up easy but water intake is my let down so I'm behind you achieving your goal 200 per cent with not being in your face if you know what I mean !

Do you like music of any kind? I know you said you struggle to walk more than 15 minutes! I was wondering whether your fit enough just to stand on the spot and wiggle slightly to some music you like and maybe do a few steps on the stop at the same time!

Please tell me to mind my own business if you like as I wont be offended in any way. Its only that I love music and find it focuses me to move around a little more instead of sitting! I know you struggle big time with your breathing and just wondered whether this may help you.

Hows your food appetite? As I mentioned before I adore cooking and can normally knock anything up in my head with very little ingrediants. If you want some recipes or easy cooking ideas let me know what you like and what ingrediants you have around.

Oh well my friend, i look forward to hearing how your days going so far.

Regards Slaines

Reply

Do you know I'm feeling much better from this afternoon. If you read the post I answered to miles you will see why, I'm drinking over 2 litres of water a day lol and didn't realise. And I've got bit more energy this afternoon my nausea subsided a bit and so did my breathlessness I'm so happy . Yes I love music all kinds but mostly reggae. Yes I can move on the spot I can do that. Actually that's a good idea. And you can ask any question, I don't mind. I will answer, I don't mind you telling me about recipes it's lovely of you. My appetite is being curbed by the water I'm drinking. But I'm loving the new feeling I've got from cutting all rubbish out. I'm hoping as I carry on with this healthy eating which is what I will do that my breathing improves and the gastritis n reflux diminishes too. I realise this is only a week doing this. And I'm going to weigh myself once week now to see if I'm dropping weight hopefully I will. Also I'm thinking as the body gets used to the change of eating habits maybe I will have the energy to walk further I'm so enjoying this

Reply

Wow what amazing news on your progress in only a week! I'm so pleased for you especially the breathing improvement and the amount of water your drinking which is fabulous to read about. It's wonderful to see that others are also supporting you too!

I'm pleased you like music and reggie is a good one to move your feet to, so let's get you started if your up to It tomorrow! Maybe start with 3 minutes of step dancing on the spot for one song. If you feel ok after one then try another! Doing this will also add to your daily step target too! You might even eventually double them!,

Good luck tomorrow but promise ne you will only do what your comfortable with.

Nighty nite

Slaines

Reply

25 minutes walking is blummin good ๐Ÿ˜ as you woild say slaines - but it is - thatโ€™s most I can normally do. ๐Ÿ˜๐Ÿ˜๐Ÿ˜

Milo

Reply

25 minutes is ACE!!!! Some people never do that and there fit!

If we were all fit I would have popped you and Pussycat some of my banana and walnut muffins cooking in the oven as we speak!!!

I usually add my left over banana to a milk smoothie which is more healthy but instead I'm baking for others enjoyment!!!

Bye for now!

Slaines

Reply

I can taste then now

Reply

Slaines

Iโ€™m not allowed to eat banana, nor coconut, nor grapefruit, nor avocado, nor just about anything โ˜น๏ธ. Oh yes and no sparkling/fizzy drinks! Afraid I turn a blind eye to that ๐Ÿ‘

Miles

Reply

Brilliant support between the 2 of you, lovely to see, good luck to you both xx

Reply

I'd love to keep in touch with you too laura what an amazing support system on here . When you feel so ill you do tend to feel alone even though got friends n good family . I don't want to burden them

Reply

Who's Laura009.

1 like
Reply

Hi Slaines

Read the posts if you have time - you will soon find out Lauraโ€™s โ€œhistoryโ€. All I will say is that Laura is passionate, for very poignant reasons, about not drinking the naughty stuff that has so badly affected many of the posters lives here. (Sorry about the shocking grammar) โ˜น๏ธ

๐Ÿ‡ง๐Ÿ‡ง

1 like
Reply

Thank you for note on Laura ! I've now started to read her history and I must say she's an exceptional person! Maybe in time I'll get to know her too!

2 likes
Reply

Good Morning! How was your night and morning so far? Try and hang on in there! Will chat later !

Reply

You may also like...