Hi, I’ve been drinking too much for years, and I knew it would catch up with me at some point.
It’s not bottles of high strength cider, vodka, or Special Brew, it’s just a daily intake of too much over too long. I have been diagnosed with liver disease after a varices bleed due to portal hypertension. I spent a week in hospital and had the varice banded. The whole thing scared the hell out of me and I have stopped drinking. However, I have swelling (oedema) in my right ankle and calf, and some swelling on the left but much less so. I saw my GP today and he’s not great at reassurance or helping me understand what is happening to me. He says the swelling may be becoming worse due to the liver further scarring as it heals as best it can. It seems to be getting worse despite the compression socks. I have also been given a drug called Carvedilol which isn’t making me feel too good, and I’m not sure what it does.
A second endoscopy reveals no more varices in danger of bursting, but I'm still scared to bits. My poor wife and I watched her apparently healthy father die of secondary liver cancer a few months ago, one day he was complaining his legs were swollen,then into hospital, then died within a couple of weeks. I don’t really know what to do other than stay sober and wait to see the gastro consultant again in November.
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Hiker65
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I hope that you continue to stay sober, from what I've read here on this forum is that alcohol is poison to your liver. I'm having a ct scan next Friday to check out the intestines that couldn't be seen by the gastroscopy and colonoscopy and then I'll have to wait to see the gastroenterologist to discuss the results. When I was first diagnosed by ultrasound scan I was referred to a gastroenterologist and told that it would be a minimum wait of 18 weeks. I paid to see him privately and he has put me on his nhs list. I think that if I'd waited I wouldn't be having the ct until after Christmas and like everyone else the wait was too stressful. At some point I'll have a capsule endoscopy and a bone scan but I just want to know what type of cirrhosis I have as I don't drink. Are you under the care of a gastroenterologist or hepatologist? My gp has been brilliant with me since I complained about the gp who just mentioned in passing that I had cirrhosis ( a whole other story) but gp's sometimes panic over blood results that the gastroenterologist isn't in the least bit concerned about. I want advice from a dietician and or a liver nurse but suspect this won't happen until I get firmly into the hospital system.
Hi. Well done for getting off the booze and hope you manage to stay off it.
Carvedilol is a beater blocker to treat hearth failure and high blood pressure.
I'm surprised you weren't given diuretics to help with the oedema. May be worth seeing your GP again or even a different one for a 2nd opinion if you aren't happy?
That sounds almost identical to me. Upon coming out of hospital I also had ascites and was horribly bloated. I had 10 litres of fluid drained from my stomach and thought my life was over. Always loved a drink, (had a pub for 10 years) but never struggled not to drink if needed, so gave it up totally. Ascites never came back, I've ankles like a ballerina and no longer take any tablets. Touch wood, I've been super lucky so far, 4 stone lighter and feel 20 years younger than I did when I drank.
Hi Hiker, Abstaining from Alcohol completely will do nothing but help your situation. Stopping drinking is the easiest thing I ever did in my life, I did it hundreds of times. Staying stopped however was the hardest yet most satisfying thing I have ever done in my life. Little would I know that after 11 years of sobriety I would be told that not only did I have Cirrhosis I had developed primary Liver Cancer as well. Effectively being told that without a transplant I would die. They then told me that the years of Alcohol Abuse wasn’t the cause it was caused primarily because of a bad diet. 2 1/2 years later I finally get the call that would change every bodies lives forever. I went to theatre for my “life saving” operation only to suffer a massive haemorrhage and a “life saving” procedure quickly became a battle to survive. I spent 12 days in a coma and I am told that the prognosis was I would die imminently. I am happy to report that I am still here, still sober, approaching my 16th sobriety birthday and getting along with life. I believe that by abstaining from alcohol for a long period prior to my traumatic transplant attempt is part of the reason I am still here. I attend AA and have found it the perfect place for me to maintain my sobriety. I now attend to help others who are starting on their journey, and stand as an example of how it can be done. If your liver is struggling it produces excess fluid and this can accumulate in your ankles, your legs, your stomach amongst other places. I have only ever had to have my lung drained and they took 12 litres of fluid from one lung. I now am on 2 water tablets a day, whilst inconvenient, I am now able to expel the excess fluid through the normal channels. You should consider asking for a referral to a hepatologist as they specialise in liver and all it does.
Keep going and if you need any further advice please just ask.
How old are you biker, you soundlike my Husband, im desperately trying to warn him of the dangers of drinking. Currently he's abstaining but her goes through binges. It terrifies me.
Hi hiker, I'm sorry to hear of your health problems it must have been a shock even with the past drinking. Well done on quitting though as everyone says that's the best and only thing to do but not always so easy. You say you're unsure what else to do in the meantime, one of the best things you can do for your liver health is clean your diet up aswell. Cook from scratch, cut salt to a minimum, beware processed foods, cut sugar down, eat lean proteins, plenty of veg and fruit and only good fats etc, that can only help. As ray says above I would probably push for an appointment with a hepatologist. You sound a little lost with it all which is understandable, GPS are generally next to clueless that's why we need the specialists. Why has nobody explained what the drugs are and what theyre for? I personally would want to know before I started any drug regimen, you may be the opposite but if not you can write some questions down for when you're next at hospital, you'll probably find it a comfort to be more informed. You'll get great info and support on here from people that have been through this so stick around. All the best to you. Stacie. Xxx
I’ll try and answer everything here. I’m 53, ex tree surgeon (drinking a lot after a hard day was sort of traditional for us and hard to avoid).
Back in 2008 I spent 3 weeks in rehab and managed to abastain completely for about 10 months, then slipped back into drinking again. In 2013 I was diagnosed with Lymphoma of the thyroid which explained a lot to me about my slow metabolism, always feeling cold, fatigue etc. By this stage I was also suffering some hip pain at work. My haematologist told me the chemo regime was hard on the liver and to cut my drinking, which I did. After the long course of chemo I discovered my hip was partially collapsed and needed replacing. Not only this, but the other hip was also showing signs of wear. This avascular necrosis is thought to have many causes, overworking the joint at work, drinking, and the high doses of steroids I needed as I reacted very badly to the chemo. So I have had a very long period out of work, depressed as a result, and looking at a few beers and glasses of wine afternoon and evening as a recreation rather than to get steaming drunk. I had two hip operations, a bone graft and a total replacement. The bone graft left side is also becoming increasingly painful and I see another operation in my future.
The only meeting I’ve had with a gastroenterologist was at the hospital when I was admitted to A&E. He told me to stop or I’d be dead in a few months. I have another appt with him sometime in November. A second endoscopy showed varices, but not in danger of a bleed. So next endoscopy is for about 3 months time, so also November. That’s all I know for now, but having seen my wife’s dad shrivel and turn yellow in only a few days I’m worried, both for me, but very sincerely for her that she doesn’t lose her husband to liver failure also. I have a large, caring family who I cannot tell the full details to, and 3 lovely dogs that are utterly devoted to me.
I did the AA thing, and though helpful, it wasn’t really for me. I’m too shy to share so just sat and listened. I gave it a good go, the steps etc, and I see it working for so many. I have made an appointment with a local support group who deal with addiction and have an appointment with them on the 3rd Sept. At the moment the sheer horror of vomiting and passing blood is enough to keep me sober, but that memory will fade and I can see me in a “just one wouldn’t hurt” situation.
So really, I’m feeling scared and in the dark as to the extent of the damage. No biopsy was recommended at the hospital but I had an ultrasound showing fatty liver and enlargement. Maybe I should push for a consultation with a hepatologist or even go private, my doctor though honest and pragmatic, won’t give a prognosis at this stage saying I need at least three months abstinence to see if the liver tests stabilise. I am not, apparently, at transplant stage. It’s all rather vague. Using Google I have found out about Cardevivol. Google is another scary doctor that doesn’t always offer the right information, but my assumption is I’m taking it to increase blood flow through the portal vein as my blood pressure and heart tests are all normal.
My diet is surprisingly good, even when drinking I only had the odd couple of days when my appetite was very poor. I used to have fruit smoothies and protein drinks. Generally I eat fruit (blueberries, strawberries, kiwi, raspberry) in the morning. Sometimes toast too. Lunch is a sandwich, or maybe an individual pie (not great I know), and a proper meal in the evening. I think I probably consume a fair bit of salt though.
You've had a rough time of it mate. I suggest you talk to your gp about your anxiety, it's entirely normal.
Cancer alone is a major trauma, combined with bone and liver problems it's no wonder you're feeling low. Make it clear that you're struggling with the mental health side of things. In my experience unless you're explicit with the problems doctors may not act.
I would be looking for referral to a heptologist, and later if appropriate, a nutritionist when you know the score. Even with the best diet in the world if you've been a heavy drinker your body may not get the nutrition you've been eating.
Read the barnet post above and check out his blog (can't find the link atm I'm sure he's posted it a few times) it's a great motivation for those who think being sick is the end of the world.
Just to add, while undergoing the hip operations and long recovery (particularly the bone graft), I was taking a lot of Paracetamol, way more than recommended, and wonder if this has also taken a toll.
Annoyingly, now the bone graft side is becoming painful, Ive burned my bridges for painkillers. No NSAIDs or paracetamol allowed at all. Ive been given Amytriptiline which I take in the evening and I think it helps, but I do fall asleep on it and feel drowsy the next day.
Hi Hiker. Wow you have a lot going on ! It's great you have a supportive wife and family around you. Keep going with giving up the booze and continuing with a healthy diet, all this will benefit you greatly in the long term.
If you are finding AA difficult it may be worth talking to your GP about 1 to 1 councelling at home? It worked for my husband for 3 months unfortunately he was so ill he died before 6 months had elapsed so never got onto the transplant list.
Stay positive and I'm sure you will face a healthier future
xx
PS.
If you are googling illnesses and diagnosis, I recommend you only use the nhs sites. Many are American sites and can be incorrect, alarming and contradictory.
Thanks Laura, and so sorry to hear about your husband. That situation is at the heart of my fear really, that I’m really quite I’ll and it’s not being followed up correctly. Or, I’m being a bit hypochondriac and I should wait nearly 3 months for my follow ups.
Put a bit of pressure on them I think. Let them know your concerns and need some definitive answers asap.
Hiker65. Keep strong And well away from the drink. As others say on this site it does get easier and the cravings do pass. Seems like you've had a tough time with the hip ops etc...
Take one day at a time thats all you can do. I still crave a drink every day but so far have managed to avoid the urge. Avoid it and go back in 3months im sure the tests will improve. Keep positive i found this forum very helpful when having a crave. The support from people on here is a reall life line. Keep positive. Nick
I’m finding it quite difficult not scratching the itch, I’m certainly going to be seeking support from our local wellbeing advisory service. I’m suffering what is neatly called Mad, Sad, Bad, Glad.
As in, “I’m so mad Ineed a drink”, “so sad I need a drink” etc. I nearly caved yesterday early evening (my usual time), after having a really productive day. The reward (Glad) crave kicked in mightily and the logic of my condition began to get stifled by the fact I’ve been 6 weeks sober and a pint probably wouldn’t hurt. I settled for a couple of pints of lime and soda which gassed me up sufficiently. It’s a sneaky bugger, the alcohol brain.
My course of action is to seek a second opinion with another doctor in the practice to get some information and advice, and see if they agree with how and why things have been left so up in the air that I don’t know if I’m living or dying.
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I'm new here and very worried
Hello everybody, I am hoping to get some insight about varices.
Very new and very confused
Another scared person!
