sorry

[Sophia1968]

I am sorry that I keep asking stupid things on here, I am usually a very level headed person, if I had only been given help and understanding regarding my scans etc then I would have got my answers from there, being left with no help has caused all this worry and anxiety…… I will try to keep my thoughts off of here in future as I know it’s not fair, take care everyone , I sincerely mean it when I wish you all the very best on your journeys x

[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

[Flid]

Sophia,

You are not left with no help - that’s what this forum is for! There are thousands of people here, from all the time zones, so regardless, day or night there is someone out there to listen and empathise, someone who understands and is standing on the same rolling boat deck you are on and trying to find their feet. They may not be the ones who can answer your questions but there is always someone here to throw out a hand and offer support.

Don’t cut yourself off from a sympathetic ear freely offered or feel that you are asking too much.

[Sophia1968 in reply to Flid]

Bless you hun, thank you, everyone on here has been an amazing help, I don’t know where I would be without you all, I just feel very let down by my doctors, they do not take my results seriously 😒, thank you again, it’s much appreciated xx

[Louby1954 in reply to Flid]

Perfectly saud Flid 🫂💖

[skay1957]

Sophia, calm down girl! You aren't on death's door!! Think of it like this, you are the one in control of your outcome and it sounds like you have been doing all the right things! You just have to keep going like you're doing!! Numbers can fluctuate a few points here and there. No biggie. You don't have any huge spikes up or down, right? Then you're doing ok. Stop worrying about something that hasn't happened yet. You aren't bothering anyone here, rant all you want, we'll listen but you need to realize YOU are on your way to saving your life so keep up the good work! You don't have cirrhosis, right?, so your outcome is in your hands. Go swimming in a pool, go exploring, do any activities you can physically do. It's all good! Contine continue, continue to eat healthy!! Don't go back to your old eating habits! Ever!! Stop stop stop worrying! Live your life!!! Tell yourself you're going to be ok as long as I take care of myself!! Seriously, though, you don't have cirrhosis. Stay on the right path, it'll all be better, just give it more time and DON'T GIVE UP!!!

[Louby1954 in reply to skay1957]

Well said skay1957. Tomorrow is another day. Enjoy every minute of everyday 🦋💖

[Sophia1968 in reply to Louby1954]

Louby on the whole I am very positive and I do enjoy every day, this was an off day I was having or maybe an off few days, if I was not positive I would not have had the mindset to lose the weight or do the exercise, but no matter what, with those figures and scans I should be followed up and I’m not , this is all I ask, I will accept it either way, but I need to know cos it affects everythnig , don’t forget I am trying to juggle diebetes , a rare wheat allergy and liver disease then on top possibly RA ….. it’s ok going through life positive but I still need to know where I am at so my positivity can work around the situation, for example I only lift 4.5 k at the gym , even though I can and want to do 9.5k but I can’t because if there are varices it’s too risky, by not knowing I can’t up my weights in the gym, I only go once a week for an hour as I mainly swim, but I still want to up the weights, being left in limbo is not good and not fair and even the most positive person will get off days in that situation believe me x

[Sophia1968]

Thank you, I do appreciate your words and I will take it all on board, you are right there are no big spikes so I should not panic….. as for not having cirrohsis this is my problem, I need clarification one way or other, my scans show severe liver impairment, my kpa is 21.5 the letter stated cirrhotic brackets …. But that’s it, nothing else said….. now I have this RA hanging over my head, when I went to collect the results I was told I could not have them ( they always print my results for me) I was told they are high and I need to see the nurse first, this is what set my anxiety off yesterday, hiding my result until Tuesday does not help someone like me , thank you for the time you spent in replying, it means a lot xx

[Realy in reply to Sophia1968]

Are you speaking to someone this upcoming Tuesday about them?

[Sophia1968 in reply to Realy]

Yes , all I know is they are high but they won’t tell me until I’m face to face on Tuesday, it’s just ruined my whole weekend having to wait cos it plays on my mind

[Realy in reply to Sophia1968]

I understand believe me, just keep positive and continue the work you’ve been doing and see waht they say Tuesday.

[Sophia1968 in reply to Realy]

Will do hun, thank you x

[Louby1954 in reply to Realy]

My next step of my journey is Cirrhosis. I have just moved . One of my new Drs at my GPS called me. He is very concerned with my liver results & asked me question's parked up my stroller & sat on it. One question was who was your consultant before you moved. Told him & said type it in your search engine you will find him. Got him thank youI am going to contact him & together we will find the cause. My biopsy results went to Addenbrooks. Stiĺl my former consultant dies jit know what's causing it. I just accept it & every other diagnosis that is thrown at me. I am 69. I thank my guardian angel every morning I wake up for letting me see another day. Dare say your much younger than me. Try to keep a positive head on. Not easy I know & yes I hade a crumple button & sob & cry I bounce back. Laughter really is the best medicine

And I laugh lots. Stop panicking sweetheart x

[Readlots]

Sophia, it’s horrible waiting for results. We all get that horrible knot in our stomachs around blood test time. You’re not alone and you don’t need to apologise for asking questions on here. Hopefully this will lead to a referral, some answers and treatment. Then you’ll start to feel supported and more in control of life. Hang in there, you are a strong, brave woman who can handle this

[Sophia1968 in reply to Readlots]

Thank you my darling, you always say the right thing, you understand how I can’t be positive 24/7 but you never judge me, I am worried as to what will happen next, but hopefully I can start getting answers, as to why my inflammation markers are always really high , hope you are ok xx

[Readlots in reply to Sophia1968]

aw bless! I’m fairly sure I put my foot in it on a regular basis, but I’m glad I said the right thing for you. I’m doing well thank you, just a bit annoyed that my clinic appointment has been cancelled for the second time. But hey ho - it was just a routine one. Good luck today

[Sophia1968 in reply to Readlots]

Hi hun , you have never put your foot in it with me, you are straight and honest and that is a good thing, sorry for the late reply , I have been very unwell since Tuesday, still not great even now, I just wanted to update you on my RA screening blood test, it came back normal which I was pleased about and said oh that’s good, then The nurse said well it is and it isn’t cos you could still have it as the blood tests are not always reliable 🤦‍♀️ I thought why do them then lol, anyway she is referring me to rheumatology just to be sure, it’s frustrating really cos the one referral I want is haematology or whatever the liver one is called and yet I can’t get referred for love not money, I don’t understand why it’s all being played down when my scans and reads are so bad , unless they really believe it is all weight related and won’t take me seriously until I lose more, who knows what they are thinking , I give up trying to understand lol xx

[Readlots in reply to Sophia1968]

No need to apologise, we all pop on here when we can. Sorry to hear you’ve been ill. I’m glad you’ve got a referral to a rheumatologist though. It was worth the blood test just to get that! If they don’t know the answers they’ll pass you on to the right specialist and you never know, it might be a hepatologist.