Hi all ! I’ve had cirrhosis for 5 years was diagnosed with decompensated liver but stopped drinking alcohol straight away and then have been compensated since . I now have started the journey of portal hypertension and varices . I’m going in next week for my third endoscopy in 3 months , 1st one they found a very large varice with red spot that they banded and the second time I had more varices but I wasn’t healed enough so I’m back in to get them banded next week . I was wondering if any of you who are at that phase of cirrhosis or been through it could tell me how many times and how long this can go on for ? and if then acites comes along too . I don’t have that at the moment but I’m aware that it’s high on the list . Just feeling a bit daunted at the moment as to what my future holds .
I’m not a doom and gloom person and I have a great life luckily but this part of my liver issues has been so sudden and I wasn’t really prepared as nobody explained it properly to me , probably because of covid and getting my appointments delayed . Thanks in advance anyone’s stories I’m happy to hear
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Lilliebell
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I think it very much differs from person to person also depends on the regime your consultant employs - my hubby for example never took a beta blocker his doctor went for an aggressive banding regime.
My husband began his liver journey with a massive variceal bleed in April 2012 - he had 7 burst varices at that point. His local gastroenterologist did four further endoscopies with 7 further varices banded.
When he got referred to Edinburgh though his new consultant did a further seven endoscopies over the next year - with a total of 28 bands. [42 varices in total over 2 years].
Since July 2014 he has not required any further varices banded and the ones in his 'danger zone' are all eradicated. He still has varices higher up in his oesophagus and his portal hypertension has reversed somewhat after his spleen died (following an embolization operation as portal hypertension had caused aneurysms in his splenic artery).
Hubby has never thankfully shown signs of ascites - everybodies journey is unique with this condition.
Thank you for your reply and sharing your husbands story so far hope he is doing well now . Gosh so much can happen when you have chronic liver disease and it does seem no 2 people are ever the same , I think it’s harder for the families Really ,I’m very lucky with a great family so whatever is thrown at me I will crack on .
Hi:)i went through banding few years ago:)i think for everyone it’s different timing when they disappear.Me personally needed about 11months.They kept reappearing despite the beta blockers on the side:)I haven’t got ascites at first and it appeared only later,like in a year or so.Not everyone needs that long banding regime.Not everyone get ascites:)For some people varices not reappearing again,some people get varices and ascites together:)Are you on beta blockers?I wish you all the best
Thank you for replying and sharing your experiences, I’m not on beta blockers and no one when I’ve been to my appointments has mentioned that to me so far , they did also find what they think is a gist in my stomach I hadn’t heard of that until I googled it so I’m waiting to see what’s happening there too .
Hi, first and only symptom of liver disease I had was vomiting up nearly all the blood in my body causing a stroke due to burst varicies this was in December 2008, had many banding done and prescribed propanolol for portal hypertension it took several years to diagnose NASH, it wasn't until December 2015 my blood results suddenly declined and a transplant was mentioned. As long as you keep having endoscopy to check on the varicies and follow a healthy lifestyle you should be able to live a normal life.Talk to your doctors.
Thanks for replying, that must have been so scary for you , I feel lucky that mine was caught just in time as my varices was full of read spot . Did you go on to have a transplant? I’m keeping healthy , my Bilirubin had gone up on my last blood test but the rest were fine . Look after yourself and have a great weekend.
Hi I am in exactly the same as you. Jast had 6 varces banded over the last few months. Didnt even know I was getting it. Havent spoken to my consultant for a year and a half. Just get sent letters from various departments banding elling me to attend. No idea what's going on ☹️ feel stressed especially with the banding. Scunnered.
It’s very frustrating isn’t . After my banding the nurse spoke to me after just saying ide had the banding done and they had booked another appointment.when they phone for my appointment the receptionist was the one who told me I hadn’t healed properly from the first banding , it’s all a bit odd like they expect you to know what’s happening when we don’t. . I’m going in next week again so am going to try and get more information or call the hospital to see if I can speak to my consultant afterwards this time . Best of luck to you keep in touch
All the best, talk to the endoscopy team on the day made a total difference to me. They were brilliant. Uped my sedation the lot. Were so nice. Take care and keep in touch x
I have my 18th endoscopy in three weeks time. I had 17 in 26 months and lost count when they had banded 60!! I was not diagnosed until almost too late and variciles burst at home. I hospital 10 weeks to get me stabilized. Never drunk alcohol, but I have nafld with nash. Fibrosis, scirosis , portal hypertension. Portal vein thrombosis. On beta blocker, blood thinners and tablets for ascites. I am still alive and make the most of every day. My liver can never recover, but 31 months later it has not got any worse. X
You have had a tough time of it . Well done you for getting through it and glad your liver isn’t any worse . The endoscopies and banding will save my life so I realise that it’s got to be done and if I end up with loads that’s better than burst varices . Thanks for your reply take care and hope your next endoscopy is good news and no banding x
Hope you've been OK Liliebell. Struggling a bit here last banding has given me heartburn and feel sick during the night. What next eh? In daying that last banding wasn't as bad as the first. Can barely remember it ! Sedation worked better.Keep in touch here anytime 😘 Christine
Oh it’s horrible after isn’t it , hope your heartburn gets better soon It can be so painful 😣 I’m now prescribed omeprazole and I also take gavisgon which does help a lot . I’m back in on Thursday so will update you . Take care and eat ice cream 🍦if you can x
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