hi all, I promise I won’t talk about me or my fears cos I know you have all done so much to reassure me and must feel like you are bashing your head against a brick wall, … I really do thank you all from the bottom of my heart, however I have gone into a bit of panic and upset mode and could really do with your company, so I thought I would start a conversation regarding trials ( not for me obviously but out of interest) so here goes, has anyone seen any updates on the Japanese trials that were being done, where they took cells from a person with cirrohsis and then injected them back in to hopefully repair the liver? It said trials would update last year but it seems to have just gone quiet, I would be interested to know how it went, or was it all just a made up post , I can’t tell these days, ( I do actually find medicine fascinating so all this really interests me) also do any of you believe that one day they will find a cure other than transplant? Wouldn’t it be lovely if they did, medicine has come so far even with cancer treatments, but you don’t hear much about cirrohsis, I do believe there is a trial med for fibrosis cos my dr mentioned it ( before I got my shock high kpa) but again I don’t kvow much about it apart from it apparently having good responses, hope it was ok to ask these questions on here , hope you all enjoyed the nice weather today, thanks again to every single one of you who has taken the time to reply to my other posts, you are a fantastic lot of people xxx
Future Treatments: hi all, I promise I... - British Liver Trust
Future Treatments
The BLT recently released information about this trial being run at Edinburgh. healthunlocked.com/britishl...
There are also details about 'poo transplants' for liver disease (I sh*t you not ....... LOL!). britishlivertrust.org.uk/po....
Katie
Teehee! 🤣🤣
Katie no way !!!! How on earth would poo transplants work lol, I will look forward to reading these links thank you so much hun xx
very interesting posts Katie, and I was surprisingly impressed about the poo one, it does make sense , loved reading them thank you xx
Bahahaha. That was the most epic and hilarious post I have ever seen!!! Thank you for that Katie.
Hi Sophia, I do believe they will find a cure one day. Both my kids have type 1 diabetes and I’ve followed the remarkable developments in treatment. There are groups of charities working on autoimmune diseases that are teaming up since Covid started to understand how immune systems work better. With advances in AI ( which I have mixed feelings about) I think things will advance even more quickly in the future.
aww I’m sorry to hear your two are type one bless them, but I agree the way it has moved forward is amazing, im type 2 and in the 7 years even I have seen big changes, that is very interesting to hear that since Covid they are really looking into how the im one system works, I agree with you, I do think one day there will be a cure for many of these things xx
This is pretty heavy going and I needed a dictionary, but it’s interesting: journal-of-hepatology.eu/ar...
I will take a look thank you xx
I got lost half way through lol, xx
Me too! But the gist seemed to be that B12 might help - they’re looking onto it 🤞
yea b12 and folate , both mine are low so it does make sense xx
Morning Sophia,I really do believe that the trials that are hopefully going on will bring a ray of sunshine. The world of medicine is so uplifting l. Have a super day x.
I hope so to hun, I never realised how involved or scary this all is, I am so in awe how people cope on here, I wish I was like that cos I kvow it would help, I have my first councilling this morning, poor woman will have her work cut out with me xx
A very timely post as the research area on the website has just has a slight revamp. Please keep an eye on this in the coming months when we'll be sharing details of more new research projects and trials.
britishlivertrust.org.uk/he...
Best wishes
British Liver Trust
excellent, thank you , look forward to it xx
wow, I have just read loads, it makes the future look much mor3 hopeful, thank you xx
Let me know how it goes. You have to remember you are fairly new to all this. I was exactly the same as you. Xx Take care
honestly hun 🤦♀️ It could only happen to me, I went straight in, she asked how she could help, and I said people assume I have health anxiety but I don’t, it’s not in my head, I have real issues that I am worried about, I rattled off a list of all my illnesses aged five and upwards, the poor woman did not get a word in, she listened really well though 😂 after I had finished and after three lots of tears during the 40 minutes, she asked if I was booked in for therapy, if not did I want it be, I said oh I assumed that was you, she said no I just find out the best help for you and book you in, I said omg I sat here and told you my whole life story , not stopping for breath and you didn’t really need to know, I could not apologise enough, she said no please it was good to know, because now I know the best place to help you (prob a padded cell and straight jacket😂) she was lovely though and took loads of notes etc, but couldn’t arrange anything there and then because I guess that’s what the 40 minutes was for, anyway I agreed I will do therapy, so I will be sent links to see what suits me, then I’ll see this lady in three weeks and we can go from there, I must say, I came our laughing, which is good, cos I’m that person who always does things like this 😂 it could only be me lol xx
🤣😂😆😁😄😊
That’s brilliant, first step to getting some support. Bet you felt loads better for just telling someone. Hopefully you won’t have to wait long for your first session.
going forward it will probably help, today was just a bit of a mix up really, I guess if nothing else it will get me out and waking to the appointments , thanks for replying hun xx
Well done sophia!!Its a difficult first step.....been there......but its been a great help to myself.....
Letting everything out, I can remember when I came out of the room......I let out such a massive sigh!!!!!.
You're doing well,alot of folk are helping you along the way on the forum.
I don't suppose I've got alot to add really. I have been an inpatient at a mental health hospital....there were some extremely difficult periods.....but with the amazing help of the mental health nurses, I made it through ok,well just about😀. You will find counselling positive im sure.
But positive thoughts love,can change alot.
Best wishes. Chris
Chris , thank you my little love, i hope it helps but I am so hard to get through to once something is fixed in my mind, everyone is great on here and have really looked after me, you included, and when I read replies I feel strong again and full of hope, but a few hours later I feel on my own again and petrified, I wish I had not spoken to that dr on Monday, katie made me feel better by saying I’m not end stage , but I still can’t get those words out of my head, I keep trying to work out what they actually mean, severe liver impairment , does it mean severe cirrohisis and would they go just by the kpa number cos I have not had recent bloods, now in thinking have they studied my previous scans im so sorry to go on, but I just can’t get my head round what it all means, I also had what I thought were just little vein things on my legs but now I’m thinking are they spider nevi, even little red veins on my face that I thought was my age, im thinking now are they something else, im seeing everythnig as a symptom now and it’s making me feel I’ll with worry, I defo need that councilling don’t I 😥 I am glad that you got help with the mental health system and I thank you for sharing that with me, please don’t stop replying just because I am a pain, I really need you and everyone right now , I will try to behave I promise , thank you so much for everything xx
You’re not a pain, you’re newly diagnosed and worried. We’ve all been in the same place.
A few years ago they changed PBCs name from Primary Biliary cirrhosis to Primary Biliary Cholangitis because of the negative connotations with the word cirrhosis - you can have PBC without having cirrhosis. I wish they would do the same with ‘end stage liver disease’ - it really doesn’t mean what you think it does.
Hopefully the next professional you speak to will be compassionate and a good communicator who can give you some explanations and confidence going forward.
I find doing something I enjoy that engrossed me helps me on my wobbly days. It won’t be gardening today, but either something crafty or a bit of family research. I hope you have a good day today.
thank you so much , I agree that they should leave the names as they are, maybe not the end stage liver disease one though, as you say it’s not as final as it sounds, the funny thing is I never wanted to hear the word cirrohsis but I was getting used to it, this whole new phrase just made me question it all, the thing is my kpa was 21.5 but surely that figure alone does not make it severe? This is why I’m puzzled, do the scans show more than we reaslise or is my kpa really horrendous , I was under the impression that they needed bloods , scans and possibly a biopsy to get the full picture xx
Your not a pain love.....but seems your looking with tunnel vision....... I was given a cirrhosis diagnosis 4 years ago, yes,a difficult time......but love,life must move forward, and not drag us back.....if we are to make anything of life.....only today I spoke with my lovely liver nurse, regarding my latest bloods taken.....
She was happy with them,really quite stable,only my billirubin slightly raised. So I asked her directly was there anything I needed to be worried about, she said no,not at all at the moment......
So thats good enough for me, they now what there talking about, and I trust them implicitly.
Best wishes. Chris
thank you Chris, I kvow you are 100 percent right, I am so pleased to hear that your bloods etc are stable, it’s lovely to kvow that you can still live life, im sure in time I’ll be ok, it’s still only been a week so I will accept the non acceptance for this short while, if that makes sense, it does not help cos no one has spoken to me or made an apptn to see anyone so everythnig is all up in the air xx
Yes, they will of course make appointments for you, it just takes a while for things to get into gear. But ,yes sometimes they need a gentle nudge along😆,I've had to push one or two times.....to keep things up to date, but really the liver nurses I've seen have been amazing, and are far more easier to contact than my hep consultant, and they also say things more in layman's terms, that can be easier to understand than consultants at times,and obviously your learning all the time as well, so as they say,knowledge is power...I hope things go well with your counciling, it will be worth it. Everything needs a little time to make new adjustments.....
And your still taking news in,so go easy on yourself love.
Take care. Chris
thank you so much Chris, I appreciate all your responses , you make total sense xx
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