Varises and cirhossis.advise needed - British Liver Trust

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Varises and cirhossis.advise needed

bobbycat profile image
12 Replies

Hi

I came back from hospital 2 days ago after my first varise bleed. They banded the small veins ......and will be rebanded in a month. The consultants surprised by it as I am on stage 1 cirhossis only. ...and I was given a prognosis of 10 years.....I am very worried by it all and I know they can bleed again........just not sure why it has happened.

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bobbycat profile image
bobbycat
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12 Replies
AyrshireK profile image
AyrshireK

Hi bobbycat, I wouldn't get 'bogged down' with prognosis and such like. No one can prophecise how long your liver will last. There are folks on here who've had a cirrhosis diagnosis for 20+ years.

My hubby has had a diagnosis of cirrhosis which is auto-immune caused and only came to light following a massive upper GI bleed in April 2012. His consultant went aggressive on a banding regime and after 42 bands in two years. On his last two annual endoscopies he has had the all clear and they say his varices are eradicated though he will still get check ups to see if they've come back.

He did end up on the transplant list but after 10 months he was actually deemed to be doing too well and was removed from the list. He's now being monitored quite closely to keep an eye on what's going on. No one has ever given us any details of stages, scores or prognosis - we just get on with life the best we can & fingers crossed that doctors are on the ball in case of any deterioration and hopefully transplant would be an option.

Wishing you all the best.

Katie xx

bobbycat profile image
bobbycat in reply toAyrshireK

Thank you that helped, I just never expected it with PBC.....that it would go so far so quickly. The consultant I will have for the next endoscopy is releasing the bands a bit as he put them in very right apparently but he did say the bleeding could happen again which scares me.

Im glad your husband has done so well, very positive

dckimberly profile image
dckimberly

Hi there!

Everyone has different outcomes when it comes to the liver, and different things that seem to go along with, or happen because of liver disease. But some things are pretty standard.

I have varacies, but have never had them banded. They has been no bleeding. I have and had ascites or fluid build up in my belly.

Varacies are really common. Did they put you on propanol? It's a medication often used after heart attacks, but used for varacies also. It seems to slow down the heartbeat so there is less pressure on the vines and varacies. That's what they gave me,so I was curious.

I'm guessing they have told you drinking is out. That not only hurts your liver, but if you drink a lot you can have vomiting, and pressure caused by that can cause a bleed.

I'm so sorry I don't have more info, just wanted to share what I knew!

Good luck! Let us know how you are doing!

Cheering you on!

Kimberly

bobbycat profile image
bobbycat in reply todckimberly

Thank you for replying. I have a similar beta blocker but of course it didnt work......still on it though. .I have never drunk which is ironical but I have PBC an auto immune condition.

The varise thing was scary ..not so much the bleed really but all the emergency and a not so nice stay in hospital for five days with no toilet that near and having to loose a lot of black stools in two days! Had to walk with the IV stand and somehow manage.

Anyway at home now.

Just to say, I have AIH, which was being managed and then they did an endoscopy since something in my notes suggested that I might have varices. I did and had them banded in Dec 2015, having had some banded 2 months earlier. I was told that would be the end of it, but then had a bleed in March, which was a shock since I ended up in resus. However, I have felt a lot better since then. The idea as I understand it, is that they will keep checking on the varices until they eradicate them. My consultant told me I had been unlucky and that advancing like this was "disappointing", although this is not the word that springs to mind for me!!!

I too would like answers, so have requested a consultation with the QE, which I got through my GP. dckimberley has mentioned "propanol" when she means propanolol. Propanol is an alcohol, (so you definitely don't want that!) whereas propanolol is a beta blocker. I take a different beta blocker called carvedilol, but I am only able to tolerate a lower dose than they would like. When I went on the full dose of 12.5mg, it lowered my blood pressure so much that I developed blue lips- so if they do prescibe it (assuming you're not already on one), keep an eye on your lips as they are a good indicator of blood flow (at least they are for me- not saying this from a medical point of view, just my own observations- although blue lips are not a good thing!)

I'm afraid I can't tell you any more than that, since I don't know any more, but do keep an eye also for dark coloured stools as they can indicate internal bleeding. Ask me how I know- I was not told to look out for this by my consultant by the way!!

If you find out more I would be very interested to know.

Good luck:)

bobbycat profile image
bobbycat in reply to

Did you feel shaky and unwell after your experience ..I do and not so well

in reply tobobbycat

Hi bobbycat, I had some pain in my right side over my hip, which took ages to go (I had to have physio to clear it up). I did feel tired and not able to walk very far for a few weeks afterwards, but I went on holiday with some family ( a week or so after the experience) and had to be up every day and out, so that drive to do something really helped. But yes, now that I remember, it took a while to feel normal, but since then I feel more like I used to before any varices were banded. I can't remember how long it took me to recover, but I had been in hospital for something else at Christmas, so maybe I was already fatigued by that experience anyway.

Some days you will need to rest- just listen to what your body is telling you. Even though I did go out walking with my family, I didn't walk very far some days and even then I had to rest when I got back. Luckily I didn't have to do any cooking and the kids were very helpful and understanding. After the initial weariness, some of which I'm sure was shock at what happened, I have way more energy than before the banding started, so hang on in there, it does get a lot better.

All the very best :)

in reply tobobbycat

My husband was at home in bed for two weeks after the episode and stayed two more weeks before he went to the office, it Took him almost 5 months to feel much better, he was really tired and with no energy at all, i guess every case is different i gave him lots of fresh juices and the Dr gave him vitamins.....; )

bobbycat profile image
bobbycat in reply to

Thanks..did he get another bleed? I dread that.

bobbycat profile image
bobbycat

Thanks

in reply tobobbycat

You are very welcome-hope it was of some use!

Hi, my husband had banded larger veins two and a hall years ago, hes doing fine with diet and meditation, he eats with no salt and lots of fresh fruits and vegetables, the doctor have to do further tests to check them, try some yoga to keep your anxiety away, i am sure You will be alright, best wishes from México.

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