Varices: Has anybody had Varices it... - British Liver Trust

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Varices

jimboriley52 profile image
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Has anybody had Varices it started for me last March I was working and just felt tired then I vomited blood it was bright red and I put it down to taking Ibruofen on a empty stomach I was always getting told off for it. I was quite a heavy drinker being in the Army it was the norm. About 4 hour's later I vomited blood again but it was violent and very dark. Carnt remember much after that until I came around in a different hospital I went in and all my family were there they banded the Varices kept me in a week then came home. My GP explained it to me and I totally stopped drinking. 10 days later it happened again same senario. Then in May I woke up thinking it was a dream my sister was holding my hand saying your going to be ok. Then I found out I had collapsed at home losing 4 litres of blood a hour a d was put into a induced coma. Then it started the memory loss doing things out of character I thought it was the medication but its brain damage. Then I got diagnosed with diabetes my knees have virtually packed in and had my driving license revoked. I have no touched alcohol since that day. But after coming through all that I am very depressed and I wonder why I survived to end up like this

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jimboriley52
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11 Replies
AyrshireK profile image
AyrshireK

It's a scary situation to find yourself in. In May 2012 my husband vomited blood twice overnight and I rushed him to A&E from where he was admitted to hospital and into the high care unit. He was given blood transfusions and it was only after a couple of days and an endoscopy that they discovered he had varices (7 had burst) and he had cirrhosis. This came completely out of the blue, he is a total non-drinker having only ever drank once on his 18th birthday (he's now 52). We've had a lot of adjustments to make, he's gone from superfit, long distance walker to a shuffler managing only about 4 miles before needing bed rest. After a year we finally managed to get referred to the liver specialists at the Scottish Transplant Unit and we go there for regular check ups/consultations and hubby has also been having his varices banded with the aim of 'obliterating' them. They haven't given him any meds other than lactulose to help with toiletting & reduce the chance of Hepatic Encephalopathy, omeprazole to reduce stomach acid and now iron tablets as his blood count is low. He is being closely monitored for any worsening of symptoms and then we hope he'd be assessed and considered for transplant. Life isn't over as such it has just changed a hell of a lot - unfortunately life has to plod along with only a deterioration in health to look forward to and then the chance for a transplant and hope.

I see that you have given up the booze, well done you as your liver is already badly damaged it can't cope with more toxins.

Are you seeing a liver specialist at a transplant centre? I am not an expert on the selection procedure for transplant especially with the diabetes. Sounds like you should be assessed and given a UKELD score which is a points system which basically decides on who qualifies for transplant. You need to be 100% booze free to be considered.

Make sure you are seeing a liver specialist, if you arn't then PUSH PUSH PUSH for referral. If you've got a partner or support take them with you to all appointments, make a list of questions before you go. They can't just let you whither away with no quality of life. At our next appointment we are due to see a mental health specialist within the liver transplant team who is going to advice hubby on depression issues, you can't go from living a normal life one day to suddenly learning you've got something so serious, life altering and life threatening without being hit for six. Hubby gets really low at times with how upside down his world has become and the life he hoped to live has been torn away from him. If you see a doc, there is no shame in seeking help for the depression issues too. If you see a liver specialist one all the better as they know the ins and outs and what medication (if needed) might help and can safely be taken with a damaged liver.

I wish you all the best, 'keep your pecker up' as my old Grandma used to say. Life's not over yet, get a referral to liver unit and if referral is taking too long push for it. Put your request in writing too - it's what we had to do as we got a little let down by local gastro docs. You should be getting regular endoscopy and banding to look for and repair any damaged veins, you should be getting 6 monthly ultrasound scans and regular blood tests. If that's not happening either push for it.

Take care and keep in touch, you'll get a lot of support from members on this site. :)

Katie

jimboriley52 profile image
jimboriley52 in reply toAyrshireK

Thanks for that makes me feel better when you know your not alone. As for treatment I have been treated like a king.whilst in coma the carried out a procedure called TIPS which basically is a bypass for the blood to flow into the Liver. I see a specialist every 6 months who are very pleased with my progress and I have seen people about my memory issues which on a bad day I feel like a child. Iam shortly going to the gym on a course to help me. My GP has been absolutely fantastic I see him once a month firstly it wad the try different drugs until he got it right although 500+ a month takes some getting used to. I am in the process of trying to get disabiity benefits but they don't rush and after working my whole life which includes 6years in the Army and 4 in the Fire Service iam not going to let anyone call my a sponger

AyrshireK profile image
AyrshireK in reply tojimboriley52

Sounds like you are receiving good treatment and its good you have a successful GP relationship too. My hubby was a welder in heavy engineering from age 16 so like you he finds it galling to hear the Chancellor calling benefit claimants a shirker and such like. Hubby currently receives ESA in the support category .... never saw ATOS assessor all decided via paperwork. Applied for PIP in September and his claim was sent to ATOS on 30th September and we've yet to hear anything further, like you say it takes an age.

The TIPS should help you a lot and its good that the specialist is pleased with your progress, no doubt you are being closely monitored and if things worsen and the with the positive steps you are taking to look after yourself you should get assessed for transplant and the 2nd chance at life. :)

You'll find on here loads folks who are in the same boat as you or who have gone through the same processes, there are a few post-transplant patients whose condition was initially alcohol caused.

You'll find lots of support and positivity on here too. Keep strong, hope you hear about your benefits shortly - it's shocking that folks who have contributed get treated so shoddily, with the health worries the last thing you need is money worries too.

All the best,

Katie :)

jimboriley52 profile image
jimboriley52 in reply toAyrshireK

Thanks Katie. I also waiting to hear from the Army regarding a preserved pension I should get when I am 60 but if you cannot work again it's paid out early and there's a lump sum. I have friends who I used to do a bit of extra work for and they have a villa in Crete I have been about 5 time's it's in a little place called Almyrida very quiet and would do me the world of good they said I can have a week free of charge so would only need flight and spending money a mate of mine says he come to. So just waiting for Army to give me a answer. Problem is I have tried to get holiday insurance and nobody will touch me. Does anyone know any companies that would cover me

AyrshireK profile image
AyrshireK in reply tojimboriley52

If you email the British Liver Trust they have a list of insurers who will insure liver patients - enjoy your holiday. Our only breaks have been trips away in our caravan to Edinburgh for appointments at the liver unit.

All the best, Katie (again!!) :)

Ph1ldad profile image
Ph1ldad

I've been on long-term monitoring of my health (more than 15 years) and varices were picked up with me before they burst. I've been going about once every 6 weeks since March 2013 and have had in excess of 20 bandings. I've been told that the procedure is now self-defeating in that as they band one vein it puts extra strain on the remaining. The drugs don't seem to be reducing the portal hypertension( started on propanolol now on carvedilol) so they're looking into doing a TIPS which involves having a shunt across the liver. I thought mine was bad but to have all that happen with little or no warning must have been very scary. I've had new knees (two years ago) but that wasn't related to liver problems. I'm an ex-matelot so I too did the drinking thing when I was young but have hardly drunk anything in the last 16 years. My cirrhosis isn't down to drink, I had hepatitis C, but thought that after they cured me I wasn't going to accelerate the damage. Always tired and probs in the bedroom department but I can cope. Have you a partner? That must be so helpful. I know my Boys have kept me going through the rough times. Take any help and sympathy you can get lol. Good luck Phil

Please take care. This is such a serious condition but some people (including some doctors) underplay it.

My wife was diagnosed with varices a few months ago. They banded them and then she had some slight bleeding so they did more banding. At 8am on Christmas Eve she had a massive bleed and was vomiting blood. Despite all the efforts of the staff in A&E and ITU she died at 4am on Christmas Day.

Please make sure that you listen to advice and good luck

mrsmerlin profile image
mrsmerlin

Hi, I can't add to what the others have said really apart from suggesting you contact Band of Brothers for former servicemen they may have someone who can help you fight your benefit problems for you. At the very least they will have someone for you to talk to.

I wish you all the best with your health and know you will get through this - I'll run beside you at the transplant games or the London marathon once we're both sorted! X

jimboriley52 profile image
jimboriley52 in reply tomrsmerlin

Lovely thoughs. It's not until you have a serious illneses that you really appreachiate how pericous your health is

ireland123 profile image
ireland123

i know what your going through i was diagnosed with auto immune hepatitis in 2002, never know varies in the esophagus could happen,i was far wrong il never forget it as long as i live in 2008 i was driving on my own when i started to feel like i was choking then started getting really hot i knew something was wrong so pulled up got out of the car i ad to lie on the road as i couldn't stand but i knew if i didn't n one wud stop cos i started to loose sight cudn see my fone, a kind man pulled up and wen i stood the vomminting started i lost 6 liters of blood dat day woke up a week after also ina induced coma and no clue what happened cant remember what happened between when they found me and the hospitial but in the car was scariest i was on my own and i hate being on my own now. 2nd time it happened they had put on bands too tight and burst lost 9 that day but recovered faster thank god cos i cudnt do nottin myself the 2nd week in hosp when i first had a bleed.i get them done now every 6 months and its part of me now im know so well where they do it lol :) best of luck with everything!

jimboriley52 profile image
jimboriley52 in reply toireland123

Do anyone with this condition suffer with legs? Hard to walk they feel like lead pins and needles in feet.

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