Hi this is my first time of posting but have been reading all the posts with interest.
I was heavy drinker for around 15 years (wine & brandy) and began feeling ill around the summer of 2021. ( we were in the process of moving house to a new area of thecountry and put it down to stress which made me drink more!) Anyway i was shaking, retching and had a swollen abdomen and not eating. Nly having a drink would make me feel a bit better. It was only when my eyes went yellow that I called 111, saw my GP and sent directly to A & E. i was admitted to a ward and told my bloods & billirubin were off the scale and my prognosis was very poor (tld to get myfamily close)I sent 5 weeks in hospital on constant drips etc and my liver was decompensated. I was discharged in June last year, on a course if steroids which were gradually reduced. Since being a home i have gradually improved. I am currently on folic acid, Thiamine & Adcal. My ascites has gone (never been drained), i have had regular blood tests up until Sept, endoscopy (3 x grade 1 varices no bleeding & portal hypertension), Ultrascan and fibroscan. I have had no results of any of these tests and am awaiting an appt with a consultant (Ive been told mine has left). Ive chased up the secretary as i feel my life is on hold. No idea if im now compensated or jot and whether i can go on holiday etc. Ive maintained my weight at 9st which is average for me, eat well & healthily, gained muscle and jog 3-4k every other day. I havent touched a drop of alcohol since end of April last year and husband has given up too and we dont miss it. I feel generally well, just a little tired sometimes. I intend to keep up this lifestyle but just want some answers as to where im at health wise so i can make plans to travel etc. ive been working on the assumption that no news is good news (surely they would let me know if there was a problem?) Thanks for reading
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J4ck1369
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I think all signs point to a positive outcome so long as you continue to abstain from alcohol. The fact that you are not accumulating fluid anymore is a very good sign. I went from decompensated to compensated. Had to be drained 20 times. I am now doing quite well. Best wishes to you and continue the hard work. It gets better and better.
Hello love.Sounds similar to myself 4 years ago!!!!.
Certainly what I've found is that you really need to push for clarification from your consultant and liver nurse if you were appointed one......more often than not, the liver nurses will take the time to explain things better....but you have to push for information......
Well done with the abstaining from alcohol, the only way forward really.
I also have several small varices....but unfortunately my ruptured massive 4 year's ago,so massive bleeding,so I've had to have some banded.
As to regards holidays,you really need confirmation from your consultant, that you would be OK to fly,as it can be dangerous with varices, and aircraft cabin pressure ,also as to regards travel insurance. I did have several drains for my ascites. I'm also on thiamine, adcal,carvedilol for portal hypertension, also lansoprazole.
I'm currently compensated, you really should have been informed of what stage your at ,at the moment.
Thank you. Just frustrated that no feedback has been given regarding my medication, bloods etc. Just want to know where i stand. Im doing everything they told me to- cant do anymore & have no desire to drink at all
I know it is frustrating, when you,like myself,have done everything asked of us by the medics.......we have to constantly keep asking for how are condition is going on. Although I get an awful lot more detail, from my consultant, since I asked her secretary for more than a 1 sentence letter!!!!. You just have to keep on at them im afraid. Never be afraid of asking questions, that you want answers to. But I also fully understand how busy the medics are,but it doesn't stop us worrying does it!!You could always phone the blt nurses,,,there so helpful, and reassuring.
Don't give up love.
It sounds as though things have settled down well.
Thank you Chris. Il ring the consultant (whoever that may be!) Secretary on Monday & maybe BLT as well. My hubby has been brilliant but sometimes i feel sorry for him cos i have no-one else to talk to. I try to be upbeat but sometimes feel really down. Hasnt helped that just before all this we moved from Staffordshire to the North West a year ago and, because ive been poorly snce then, we havent been able to make any friends. Sorry just feeling a bit sorry for myself today then guilty because I know theres lots of people worse than myself. I just read my endoscopy report yesterday (from August but too afraid to read it before) and had no idea i had 3 grade 1 varices (& portal hypertension apparantly) as not seen a medic since i had it. Now im terrified of having a bleed after reading of it on here. Anyway thanks so much for taking the time to reply- its much appreciated x
Well to try and reassure you,when I had my big bleed,the varices were classed as grade 3.....now mine are grade 1,same as yourself ....so try not to worry.....ahhhh,im in staffs. Mentally ,some days can still be very difficult, as your well aware....at least you have a supportive other half. Some one will always help you out on the forum.....
If you would find it helpful to speak to others with shared experience, you may want to think about joining one of our virtual support groups for people living with a liver condition. You can register your interest here:
Same position I eventually emailed my liver specialistIt worked he replied by letter. In December I saw him face to face He asked if I was ok no I replied why he asked. I am confused as once I could tell what was causing what now I can't as far too many changes & diagnosis
He said he had news for me. Good I thought how wrong they are confused too & don't know what's causing my liver issues. In face to face he said NASH in letter said NAFLD
He said with your permission I will fund a trial for you. Great I replied I shall take a look as if it helps someone else I will do it. He said it may help you too
Don't even get me started on my rheumatologist 😱
I have been recommended by a friend who has just retired from liver Trust Essex a professor she has Met many times & spoken to on phone a professor in St Thomas's & guy's London. Even have his name. You know where I am going up to see him. Excellent in his field. Yes its private reasonable priced & I can afford it just. No pockets in a shroud is there. Have a lovely day just do your best. Promised sunshine today 🙏 know where I will be in my greenhouse potting up seeds for all my produce I end up with. Organically from seeds no nasties in them
It's not hard either. My therapy with Gardner I employ now to help.
I want & need answers to my issues not fobbed off
Any one interested in box me & I will give you name of professor in London
Like all the other contributors I would encourage you to chase up a consultant at the hospital where you were hospitalised as you need a proper diagnosis and also advice for the future. As you are on prescription medication I would also advise contacting your GP as letters may have gone to them but of course not necessarily in these hard times. From what you describe there is a real chance that you have developed a chronic liver condition which needs to be monitored. You should be at a minimum be having 6 monthly ultrasound scans and blood tests and as you have already been diagnosed with oesophageal varices these should also be monitored by regular endoscopies. You may also need proper dietary advice. I would put any hopes of foreign travel on hold until you get a proper diagnosis and, as another poster has said, advice from your medical experts re your condition as you will need at the very least to declare an accurate health state on any travel insurance and unfortunately may be advised not to travel at all, particularly by plane. Keep chasing. It’s your absolute right to get a proper diagnosis, particularly after spending 5 weeks in hospital! And of course, you also have the right for proper medical information information to help you plan the rest of your life going forward. Good luck.
Looks like you may have saved yourself. Of course the cirrhosis isn't going to go away, but by doing what you've done you managed to very much hinder any further progression. From what you describe my thoughts are that you are very much back in the compensated stage. I'm not sure anyone who's decompensated could run 3-4km a day. I couldn't do that now, lol, and my new liver is perfectly healthy 😆😆.
Of course there is damage there and how that will progress in the future no one could really tell. Too many factors could influence that. However, if you keep doing what you've been doing then you've given yourself the best chance of not seeing much further progression and be able to live a reasonably normal life.
Well done on your abstinence. I know it’s difficult but worth it for all areas of one’s life.
I was feeling the same way & presented with the same symptoms as you. GP sent me straight to hospital. Diagnosed decompensated cirrhosis last July. Home & on diuretics 280mg to try and control ascities. Have not been drained either. How long roughly did it take for yours to go?
As regards patient care and feeling like I’m not getting enough information regarding what is happening has been frustrating & worrying but I’ve learned from here that they are checking all these things when you get your bloods done (personally I think we should be told these things about exactly what levels, scores are being checked) each time. From what I’ve gathered from here, keep doing what your consultant advises, attend all appointments. Livers are notoriously unpredictable and I think that is why they cannot give us patients the full picture.
Sounds like you’re are doing well though given the exercise, no ascities and healthy eating.
I am hoping my ascities will go and I could have the energy to excercise. Have to spend a lot of time in bed with extreme fatigue. Any tips on low sodium diet, regaining energy all welcomed here.
Wishing you the very best and I hope you go from strength to strength.
Thank you for that. My ascities is still an issue after 6 months. I hope it will go like you but I suppose I am also prepared mentally that it may not.
Wishing you all the best. At least on here we understand how difficult things can be.
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