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British Liver Trust
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Scared

Hi everyone... new here!!! My dear husband was diagnosed with Cirrhosis on Oct 1. He ended up in the ER vomiting blood!!!! I was scared out of my mind, as was he!!!! He is 50 and was a VERY social beer drinker for many years!!!! The bleeding stopped and he was scoped. They found a large vein in his stomach (which is the one they think bled) and small to no veins in the esophagus. He had a bad tooth ache and had been self medicating with Advil (we didn’t know he had cirrhosis) Nothing was BANDED during the scope. 4 days in the hospital and sent home on a beta blocker and acid reducer and a MELD score 9 and CP A-B ( borderline) Just got through a whole host of bloodwork... does not appear as though there is any other contributing factors (like Hep, Auto Immune, or genetics). Since Oct he has stopped drinking, stopped smoking and had dropped about 17 pounds. Next is a re-scope with the hepatologist in feb! I feel like each day I do worse the news of my husbands liver disease!!!! I was rather calm during his hospital stay, but as time moves on the reality sinks in deeper!!! 1. He could have died in October and 2. I scared to death that it will happen again. Hepatologist complimented him for his hard work since his hospital stay (zero beer, zero cigars and low salt low fat diet) and said that he wants him to keep his own liver for as long as possible. I just feel so sad and that I could cry at any moment!!!! I need hope and to feel normal again, I swear I look I the mirror and don’t recognize myself. I started seeing a counselor.... it’s hard to feel merry and bright this Christmas....

Julie

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Hi Julie - So sorry to hear your story. However, it does sound like your husband is doing everything right - every pound he loses, every healthy meal he eats and every day that goes by where he isn't smoking or drinking will improve his overall health. I was diagnosed out of the blue a few months ago, and like you it seemed every time I spoke to a specialist things were getting worse, but that stops, and it's no longer the first thing I think about when I wake up. I'm certain it doesn't feel like it now, but I'm sure things will get back on an even keel for you. I do hope Christmas brings you some joy and you have some better news in the new year.

All the best

Paul.

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Thanks, Paul!!! I appreciate your kind words.

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Sounds like your hubby is doing everything right to maintain his liver and regain some health ......... that's fantastic. So many times posters come on with stories like yours only the loved one has continued on a path of self destruction. It is a lot to come to terms with when it happens so out of the blue. In our case my hubby presented with a massive upper GI bleed from 7 burst varices in April 2012. He was then diagnosed with cirrhosis, totally out of the blue as hubby was t-total and fit and healthy apart from some niggles. 6 years later and even having spent time on transplant list his condition has stabilised and he is now no where near transplant needy. Trying to regain strength and doing daily walks, eating well.

It's not all doom and gloom and thankfully your hubby is doing everything right to further his recovery.

Do try and enjoy the festivities, he's still here, he's doing ok in the grand scheme of things and you've got each other.

All the best, Katie

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Katie... bless you!!!! I so appreciate your kind words!!! I know there are no guarantees in life, I just need feel like there is hope. He is really doing well, I just hope it continues. Seasons greetings to you and yours!

Julie

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Hi Julie, your husband is doing everything possible to keep healthy. It's great that he has your unstinting support. In my case I'm the one with cirrhosis, I've never been a drinker or smoker but I've always struggled with my weight. Oddly it was after losing two and a half stone on a low carb diet that it turned out that I have cirrhosis. This was in June this year. Since then every scan, Blood test, endoscopy and biopsy the news has got worse and worse. A few weeks ago I was so upset and emotional, even hearing certain music would make me think oh I'll have that playing at my funeral! The last week or so I've been more positive and trying to be optimistic about the future. My husband is a very caring man but he has his head in the sand and doesn't want to discuss it. It's very early days for you and your husband and you're bound to be upset and angry but in time it will cease to be first thing you think about when you wake up. I hope you have a peaceful Christmas and a happier and healthier new year. Deb

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Thanks, Deb

Wishing you the same...it’s just so scary!!! I really appreciate the optimism and look forward to a morning I don’t wake up feeling nervous and overwhelmed!!!

I appreciate you taking the time to reply!!!

Julie

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Hi Julie,

I'll just give you my story. My husband had a doctor appointment with a blood test one day, I'm out grocery shopping and get home and he says the doctor called him and said call an ambulance and get to the hospital immediately!! Hubby tells him, nah, I'll wait til the wife gets home and we'll come in <sigh>. Anyway, I get home, he tells me, we put away groceries that need to be in fridge and head out to our local hospital Emergency Room. They check him and off he goes in an ambulance to a bigger hospital and one that is excellent in liver treatment and transplants while I follow behind in our car. He is in liver and kidney failure and admitted. Over the next several days he goes into hepatic encephalopathy and is not sure who I am, maybe one of his sisters?! They drained his belly of ascites, and hang bags and hook him up to stuff. In a few days his kidneys are working so one thing out of the way and happy doctors, then we are told he has cirrhosis and must quit drinking or he will die shortly. He told them okay he wouldn't drink anymore. That was in Nov of 2015. He hasn't had a drink since then except after a year his doctor okayed non-alcoholic beer. He/we are trying to quit smoking, though a bit of a struggle.

He is doing fairly well, a few HE symptoms now and again and meds for his high blood pressure and diuretics and some pills to help with neuropathy. We see his liver doctor in Jan or Feb for his regular 6 month check-up. His doctor is pleased with him because he has slowly improved at his appointments.

There are no guarantees and I worry, but he is still doing well, he gained back the weight he lost and has regained muscle and energy.

I do know how hard it can be but your husband is doing his best which is great.

My best wishes to the both of you and a Merry Christmas and a Happier New Year,

Mary

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Hi Mary,

How kind of you to reply ! How scared you must have been!!!! So glad to hear that your husband is improving. Your story gives me hope... which is exactly what I needed. I’m thankful for this forum. I’m glad I shared my story with others who know exactly what this feels like. Here’s to continued improvement for your husband.

Merry Christmas and a happy HEALTHY new year to you❤️

Julie

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Our stories are pretty similar, except they're a year apart. My other half was rushed to A&E vomiting blood on 31 October 2017. He was given the cirrhosis diagnosis then, and I felt so helpless - I kept thinking "I can't do this!" Finding this forum gave me so many answers - especially to those questions I didn't even know to ask! He was so malnourished, thin and weak, and he wasn't eating - I worried he was going to starve to death. So I read as much as I could and found out that the ascites was causing the lack of appetite and that he needed regular draining. A year on, (except for a little blip from a strangulated unbiblical hernia that needed an emergency operation), he is still here, having regained the weight he'd lost and we walk miles. A lot to be thankful for this Christmas, but I know how you feel right now, and next year feels like a lifetime away. It sounds like you're both doing all you can to get him as healthy as possible, and I hope you can celebrate how far you've already come. Best wishes for a healthy New Year for you both!

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Kyia....I am sorry you also went through this, but I am thankful that you were kind to reply to be. It makes me more and more relieved to think that with time and attention we have hope! He is truly my heart and would be lost without him. I am thankful that there is hope...I was truly feeling hopeless....

Happy New Year!

Julie

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The first bout is always the hardest. Waiting for all the smoke to clear and to get things stabilized. Unfortunately it just takes time. Fortunately though with alcohol induced cirrhosis it often becomes inactive after one stops drinking. But again it takes time. So if things seem to be getting worse always remember every doctor has a different opinion and some make it sound so macabre that it puts you in a mental state of feeling like your in a deep well with slippery slate walls all the way up. My MELD score is 9 . I bled when this happened and yet they couldn't find anything to band off. And my blood work is now all in normal range. So my experience is very similar. If they have checked for all other causes and they are quite sure it was alcohol over time that caused it then even though it may suck to not drink anymore he can remain quite compensated. For myself I wouldnt know I have the disease if ultrasounds didnt prove otherwise. For the most part I feel great and live just as well as any other normal healthy person. The only time I start to feel crappy is when I let my mind take over and put me in a depression about it all. Which is understandable if it happens. I'm just very glad to hear he is doing so well compared to what we all know can happen. This is a very great time in hepatatology. The advancements in the field are always ongoing and improving greatly. I truly believe that very soon we will start to see the ability to halt cirrhosis in its tracks. Wishing you both all the best and never hesitate to ask a question or to vent a thought.

-Phoenix

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I can’t thank you enough for your encouraging words!!!! You are so kind to write to me. Wishing you a wonderful 2019!!!!

Julie

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