fibro scan results

[Sophia1968]

we’ll I am back from my appointment, gutted and in tears, I actually can not believe this, I have cirrohsis 😥

[redpoint72]

Hi there love.Its alot to take on board, a cirrhosis diagnosis I fully understand that....I to sobbed in the hospital......wondering what was going to happen to me.

But you will learn overtime, like myself how to handle it all. Fortunately you have this great blt forum, I didn't find it until 2 years in from my diagnosis, so the first 2 years were difficult, I was sort of in the dark to some extent.

Most important thing is to follow your gastro or hepatologist consultant's advice. Also liver nurse was excellent, and still is.....I cant fault her.

Just take 1 day at a time.

It is not all doom and gloom.....I'm still here!!!!. Alright ,not every day is a rosy day,but who's life is? There are certainly ups and downs,but again that is life im afraid.

A positive attitude towards it helps alot.....

Ask questions galore love......the answers will all help to reassure you.....

I was decompensated, but with a bit of tlc, and in my case no alcohol i became compensated....and remain so.

It will just take some time to sink in.....thats completely natural.

Maybe give the excellent blt nurses a call.....there great.....so reassuring and helpful.

Best wishes. Chris

[Sophia1968 in reply to redpoint72]

hi Chris,

Thank you for your reply, I just can’t cope with this on top of all my other issues. I feel like giving up, I fight every day with one issue or other and I am tired of doing it, I feel sad for the damage I have caused my poor liver ( it does not deserve me) thank you for your kind words x

[redpoint72 in reply to Sophia1968]

Don't give up love.....ever....there is always support.......I understand its alot deal with.....but folk are always ready to help,when the need arises.

Well look at how well you are going to treat your liver going forward....like royality😀.....it will give you another chance.

I to have other health issues going on.......but now ,my way of thinking is ...right how do I deal with this one.? And I face it head on....not like I used to,I used to bury my head in the sand......that did no good whatsoever!!!.

Keep positive love.

My best. Chris

[Sophia1968 in reply to redpoint72]

thank you Chris, I’m just scared cos until I see the consultant I have no idea whether every pill I pop will cause more damage, if I leave them off I will cause my other issues to go all over the place, I take vitamin d as well and don’t know if I should stop, I’m scared to do anything , but more than anything I’m scared to be alive right now 😢 I hate sounding so dramatic and I am sorry x

[redpoint72 in reply to Sophia1968]

Don't be sorry love. Its a difficult time.I don't suppose you have a date to see a gastro or hepatologist consultant yet?. I must admit to get to speak to a consultant can be hard at times!!!!

I would call the blt nurses tomorrow, they can offer you great advice, that you can trust. And point you in the right direction. I cant offer that advice im afraid as to what medication you can take,as we are each different, what maybe right for one,may not be for another. Could you try your gp.....mine didn't know much about liver cirrhosis, at the start of my liver journey but she has been amazing, and has learnt along side myself.....in conjunction with my gastro consultant, although I now have a new hepatologist consultant.....

So gp has been really supportive for myself.

So if it was me,I would be on the phone tomorrow to blt nurses.

Take a deep breath love.....

My best.Chris

[Sophia1968 in reply to redpoint72]

thank you so much my lovely xx

[Greengal314]

hi there, I’m so sorry about your news. I had the same news a year ago and was floored and then scared out of my mind.

It’s not good news, but know you’re not alone and many of us on here send you hugs.

Stick around with this group and you’ll hear some amazing stories from lots of people who have uplifting strength and helpful ideas. I feel so much better than I have in the past several years. Physically and mentally

I had a severe knee injury long ago and there is scar tissue in my knee. That won’t ever go away but I learned to do lots of activities and even some sports, but I have to be mindful that it is compromised. I look at the liver in the same way. I have to be gentle with it and the one good thing is that it has a capacity to repair itself somewhat in a limited way.

Small positive steps in a row over and over can lead to great results So keep a positive attitude and see what you can do, not what you can’t do. Sometimes not doing something is doing something 😁 it’s making a choice Did that make sense? 🤣

Take care. 😀

[Sophia1968 in reply to Greengal314]

yes hun it did make sense, thank you, do you mind me asking what your cap and kpa scores were and have you had another fibroscan since xx

[Greengal314 in reply to Sophia1968]

I didn’t have a fibroscan. I’m in the US and had a US. Lol. Ultrasound. I had symptoms Decompensated

It has improved dramatically. I just had another ultrasound and got a very good report, but I still have mild (so I was told) cirrhosis.

They don’t do fibroscan but another hospital system nearby does, so I am considering checking it out. Right now, I am staying the course. I see some progress so that is good. 😀. Most importantly, I feel good.

[Sophia1968 in reply to Greengal314]

aww ok , I’m glad you are doing well though hun with bloods etc and you are right, if you feel good that’s the main thing xx

[Furpal]

Sophia, we are of a similar age and I did the same in 2019. All I can say is it's not a day by day thing if you don't want it to be. Have hope. I was diagnosed in 2019 and I couldn't believe it. I didn't drink half as much as those around me.

[Sophia1968 in reply to Furpal]

bless you furpal, how are you coping now two years on x

[Furpal in reply to Sophia1968]

Morning lovely, that's the crazy thing. I feel better than I have in years I just haven't been told much about it, what stage I'm at etc. Every time an appointment comes through it gets cancelled. All I know is when I first went to hospital due to a huge tummy, they said about two years. It's hard but I am not ready to go yet so I will keep smiling xx and carry on.

[Sophia1968 in reply to Furpal]

morning love, aww bless you , I am glad that you feel better than you have for a long time, at the moment I just can’t shake this cloud hanging over my head, I hope once I speak to hep dr it will help, I am sorry your appointments keep being cancelled, what area are you in I’m in Kent xx

[Furpal in reply to Sophia1968]

I used to live in Maidstone, loved it. Now I am on my own in Loughborough. Been here 4 years can't settle. I know only too well about the cloud. I sat and cried about a week ago wanting it all to be better. Hopefully you and I can keep in touch.

[Sophia1968 in reply to Furpal]

wow Maidstone is not far from me, im in dartford , pity you moved , yes let’s please keep in touch, I would really like that xx

[Scrags64]

I was diagnosed just over 4 years ago when I coughed up over three litres of blood and blood clots at home. I died in the ambulance as they couldn't get anything into me as my veins had collapsed and died on the operating table when they were banding variciles and one of them burst. I was in hospital for 10 weeks over Christmas and new year. I have had 22 gastroscopies, over 70 variciles banded but I am still here. I have stage 4/4 cirrhosis, despite never having drunk alcohol, so my liver cannot recover, but it is holding its own. Like you I also have many other health issues but I'm still alive so I keep smiling. I take 20 tablets a day for other things as well and the only one I had to change was my anti histamine. Take things one day at a time and be kind to yourself. Xx

[Sophia1968 in reply to Scrags64]

oh my goodness Scrags, you have really been through it haven’t you, you must be a very strong person to get through so much, I am so pleased for you that you did, the fact you are still smiling is very uplifting to read, as for the pills I will need to find out about my epi pens and anti histamine tablets cos I did wonder about them, thank you for replying to me xx

[Scrags64 in reply to Sophia1968]

If it's any help it was loratadine that I was told not to take as it is hard on the liver. I'm afraid I can't remember the name of the one I take now as I don't have a box to hand. Margaret xx

[Sophia1968 in reply to Scrags64]

thanks Margaret that is good to kvow the name, I will most definitely check with hep dr about my epi pens and anti histamamines, I have just phoned my doctor who reckons the other pills are ok, but she won’t kvow for sure until she sees the report xx

[Scrags64 in reply to Sophia1968]

Definitely go with the hepatologist. My doctor said they were find to take!! But then my Dr is totally useless. Told me about a month that as my blood sugar levels were so low I was no longer diabetic and didn't need insulin any more. My liver issues killed my pancreas, so I will be on insulin for the rest if my life. Hence why I only ever listen to my consultants now lol. Xx

[Dylant12]

Hi there, just read your message and just want to say that my wife was diagnosed with decompensated cirrhosis just over 3 years ago in the summer where she was admitted to hospital with severe acities where she underwent several procedures to remove the fluid and we were told she wouldnt make it to Christmas as she had also lost a lot of weight and being small in stature with her normal weight around 8st she was weighing in at 6 st ! So all in all very weak and it was an awful time for both of us and our family, but the nurses and doctors were amazing with her treatment and she spent about two and a half months in hospital where they managed to stabilize her condition but the future still looked very bleak for her at the time , we felt exactly how you are feeling now!

Long story short and the first year was tough making sure my wife had a healthy diet with lots of home made soups and help from our family and going through covid didnt help as with many folks we couldnt get back to hospital for check ups etc but we have recently been back to see her consultant who is very pleased with everything and back up to her original weight enjoying being back in our garden which is her passion and a long way from where we were 3 years ago where she had no interest in the garden or the house for the first 12months ! She is obviously relying on the medication still but all in all is enjoying a near normal way of life now so please take each day as it comes and one step at a time thinking positive thoughts !

Best wishes to you going forward!

[Hidden in reply to Dylant12]

very uplifting post thank you.

[Sophia1968 in reply to Hidden]

thank you so much for taking the time to post this reply, it is very encouraging, your wife has done amazingly well bless her and she is lucky to have such a loving supportive family, I am glad she is now at her normal and comfortable weight , and leading a near normal life Is really positive, all my best to her and you going forward xx

[kensimmons]

My hep has people on his books with cirrhosis for many many years. Just take it easy, do as your told, no drinking, good diet, turnarounds can be amazing but it depends on your case of course.

Read the second post here -

healthunlocked.com/britishl...

Read this Newsweek (from the USA) article here - look at him then and now -

newsweek.com/alcohol-nearly...

Good luck!

[Sophia1968 in reply to kensimmons]

thank you for your encouraging post ken, and also for the links , wow didn’t he do well bless him, I have no alcohol issues so can’t give it up, but I can concentrate on my diet and exercise, thanks again xx

[kensimmons in reply to Sophia1968]

I didn't mean to imply you did have such issues, just needed an example of a turnaround story. There are many out there. Good luck!

[Sophia1968 in reply to kensimmons]

oh hun, I knew that, I absolutely knew it was to show a positive story, I only meant I have no alcohol issues (only thing I don’t have ) but can defo work on diet and exercise, I didn’t word it right really , loved your post, thank you xx

[Audiking]

Hi Sophia, I know it’s a scary diagnosis when I got mine 6 months ago I was the same. But 6 months on I’m in a completely different place. There is hope just follow exactly what the drs tell you and there’s plenty of support on here. This forum has been amazing no question to silly or embarrassing or if you just need some support. Take Care of yourself

[Aotea2012]

Don’t panic…it’s scary when you get your diagnosis, but it really isn’t the end of your life. Whatever Dr Google might tell you. I was diagnosed in March 21. I was in hospital with a deep rooted infection and my liver had gone into acute on chronic liver failure. With a lot of super NHS care, I managed to pull through. I followed the consultant and dieticians advice after discharge, I haven’t drunk alcohol since admission to hospital, over 2 years now, have eaten a carefully balanced diet and exercised. This has resulted in me feeling great. I work, take no medication, have normal blood results and no nasty scan surprises. I can honesty say, I’ve more energy and feel better than I have in years. I get tired if I overdo things, but pay close attention to what my body is telling me and listen to it these days. Try to get as much information as you can from your consultant, ask lots of questions and don’t be a stranger to your GP. Mine has been brilliant at explaining things to me. Dietitian support at the beginning is also invaluable- mine helped me get to understand what I needed in my diet. I’m a keen cook so have been able to develop an interesting menu from what she’s advised. Low salt, high protein has resulted in me having a lot of chicken and spices in my diet. The chicken for protein and the spices to get flavour into my food without resorting to salt. It’s a bit of a journey, but keep positive.

[Frananncru]

I too had a cirrhosis diagnosis that come out of the blue ..

Was not a big drinker just drank socially if-out for a meal with friends.

I sobbed too as I assumed that was it and death would be looming .

I m closely followed by my consultant with annual bloods and USS every 6 months ,have not had any alcohol or medication apart from that which has been prescribed .

Four years down the line , bloods and liver are stable ,.

Try not to over think the “what if’s” avoid Dr Google and as others here have suggested take a breath … and this group will be a great source of support .

Good luck xx

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Sophia1968,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Sophia1968 in reply to BritishLiverTrust3]

Thank you xx