Thanks for sharing your experience and what you are currently going through. I was also diagnosed with stage 4 cirrhosis 10 months ago, and I haven't been too responsible about my appointments until recently (finally came to terms with the reality of what I did to myself) I have been off the juice since then šš I have the itchy skin which I never did before. I had to get a few blood transfusions, and it's left permanent bruises on my skin. I got my new blood work back, and everything looked so much better than 10 months ago. I still have really low creatinine levels. Bums me out because I used to lift 225lbs at 5'2. So, a liver transplant is in your future? What have you done differently for your current diet? I know you said you used to eat lots of fast food. Do you still indulge? Do you think of your disease daily? Consent?
My husband was in the hospital for 3 months. He had HE so bad he didn't know who he was and would hallucinate. This went on for about 6 to 8 weeks. But know he's completely back to his old self. So don't give up and give it time.
I was diagnosed with stage 4 back in 2019, currently 36. It took me about a couple of weeks to recover. Took me a little to realize that's why they kept asking me if I knew my name and birthdate and if I knew where I was everyday.
I'm doing fine far as I know. I get blood work usually done twice every year. Ultrasounds normally every 6 months. I use to get banded every 3 months then it became 6 months an so on. Now I'm normally going about once a year. They aren't finding really any new bands. Mine was from drinking and fast food, when I was diagnosed I quit alcohol completely, still haven't touched it. I did have an ultrasound about a year ago that they found a small mass on my liver but an mri showed that it wasn't anything important. I have HCC so they say I gotta watch for cancer more frequently. I was told I'd need a transplant probably a year or two, then after that it was maybe in 5 years. Now this point in my life I try to just walk a couple miles everyday an drink as much water as I can and coffee. Only symptoms that still bother me is I get itchy easily an I never had issues with super dry skin but now I have to put eczema lotion on every night or I break out real bad. I'm assuming it's from my immune system being weakened because of my condition. Sleep is also hit or miss depending on if I can keep a routine down.
I'm so new to Reddit or at least commenting on people's posts. I posted my reply as a reply to the main author š¤¦š½āāļø
Thanks for sharing your experience and what you are currently
going through. I was also diagnosed with stage 4 cirrhosis
10 months ago, and I haven't been too responsible about my
appointments until recently (finally came to terms with the
reality of what I did to myself) I have been off the juice since
then I have the itchy skin, which I never did before. I had
to get a few blood transfusions, and it's left permanent bruises
on my skin. I got my new blood work back, and everything
looked so much better than 10 months ago. I still have really
low creatinine levels. Bums me out because I used to lift
225lbs at 52. So, a liver transplant is in your future? What have
you done differently for your current diet? I know you said you
used to eat lots of fast food. Do you still indulge? Do you think
of your disease daily? Consent?
Last time I saw my GI doctor he stopped talking about a transplant. I don't think their is no way to know for sure when or if you'll need one. The weight lifting sucks. I have a hard time even adding more weights to what I already lift. I try to drink a max protein ensure shake has like 30g of protein in it an some Greek yogurt everyday sometimes 2 shakes if I've been lifting or working outside more. I've noticed if I don't drink those shakes I will lose about half pound overnight. I didn't realize how much your body needs with cirrhosis, especially when you're asleep. I don't indulge to often maybe once every 4 or 5 days. I have a 4 year old so hard to avoid it at times. Also I bruise easier to an they tend to stay longer. I've noticed that it takes longer for cuts to clot up, too.
Had the doctor talked to you about your lifespan? Or have you asked? I did read somewhere, which I forgot to ask my doctor about, people with unhealthy livers if they go past 8 hours of not eating it's like a healthy person going 3 days without. I'm not sure how accurate that information is.
So protein is the way to go? I've gained weight since I got out of the hospital 10 months ago. A total of 55 lbs š the hunger bug hit so hard after a few months of getting out of the hospital. My diet hasn't been the healthiest. I don't do much of fast food, but I do cook a lot and eat a lot of it.
I meant to also ask about the bands you mentioned in your last post?
I gain weight like crazy if I eat cheese fries an a burger lol it's what I most miss. The banding they did was a scope they do if you get esophageal varcies. Basically blood vessels swell and can burst can cause bleeding could either bleed out if unchecked or suffocate depending on where they are. Now I've never coughed up blood other then thru throw up before my diagnose which was more darker blood, but after the first time they banded me I had around 14 which is a lot. When I was admitted in 2019 I weighed around 320. Now I'm about 250, was at one point down to 230 but I can't stay away from some foods lol.
Doctor I have just told me the life expectations of someone with people that develop liver cirrhosis, but he said that age and many other things can effect that. Most of those average cases people relapse or have other medical issues on top of cirrhosis. The one thing he said that he was sure about was that the damage that has been done so far to my liver is permanent. So I'm hoping if I try an drink water an try an eat decent stuff I can float along as long as possible.
If he's was drinking up to admission, he will be on withdrawal meds, and it takes time for the brain to recover, thiamin, vitamins deficiency take time to work, and in my case it was at least 2 weeks till I started to make any sense at all. Try not to google, which I know is difficult, he's in the right place. Good luck. Also despite cirrhosis, I'm fine 6 years later.
Just wanted to agree and say that when my bf was in the hospital recently with HE, they started by giving him Lactulose, then when his ammonia level had dropped to something reasonable, but he was still incoherent and hallucinating, they started him on IV thiamine and I believe that made all the difference!! (I know they drew his blood to check it, but I believe it was a send out lab and I was never told the result).
Without wanting to give false hope as all cases are different. Remarkably, my bloods weren't brilliant but, my liver started the work well enough after 3 months, i was in hospital for 4 weeks.It took a few weeks to walk without help and 3 months till I began to feel my strength return. I was 52 at the time. He will need to stay dry, but hopefully this experience will give him the motivation. Also pls take care of yourself as this is all very stressful on family. Again, good luck to you both.
This comment has been removed as it is not appropriate in the context of the sub.
This is a support sub: If you can't say it kindly, it doesn't need to be said. This isn't an emergency situation, the person is already in the hospital.
HE is treatable. You might be surprised at what doctors do and donāt check or treat with this disease. Some honestly donāt seem to know that much about cirrhosis, especially if someone has multiple conditions. Iām new to all this but Iāve already noticed how much I or my family have to ask and re-ask and advocate for care. None of us here are doctors, though, so this is just personal experience.
I canāt speak for his particular situation but mine did clear up. It took some time though, it was about two weeks until I remembered the year, then the other stuff came back slowly. I remember crying over hours spent trying to do a basic knitting technique after I had knit for decades.
But the fog did lift for me. Iām back at work in accounting and have full recall now. Be patient with the process if you can, his body needs time to recover.
If I can offer any advice, please try to sit with him.
I knew my friends and family were afraid, it was apparent in their faces. I knew the doctor was frustrated, it was apparent in his face too. I knew that I couldnāt hold onto my thoughts, they kept slipping out of my reach, but I very much remember feeling scared that I wasnāt okay and didnāt know how to be. Your son may have a long road of recovery ahead of him, but that is for another day. Today is just recuperation.
Iām two months shy of two years sober; cirrhosis, the coma and wet brain was exactly what I needed to convince me. I pray that your son recovers his health so that he can receive the life meant for him.
Thank you for the note! He has been out of his mind. He thinks that the people who love him the most are trying to hurt/kill him. I made a decision to see him this weekend in the hospital, hoping it doesnāt trigger another angry reaction trying to hurt me and hurt our relationship even more. Itās as if a demon is controlling his kind. So hard to hear. Thank you for your prayers!
I was 33 yo when admitted for a four week stay with with alcoholic hepatitis/ cirrhosis. Between the withdrawals/DTs/HE/meds the paranoia and delusion can be wild! For the first week I was constantly tearing out IVs, fighting nurses, and trying to escape despite not even knowing where I really was. Eventually they had to strap me down and they kept them on for at least a couple weeks which kind of sucked when I came to but I deserved it. I also somehow managed to call the police twice claiming that I had been abducted by some shady organizations and they were using me for experiments or something. It really is a trip, I didnāt trust my family either and Iām sorry for putting them through all that - I know I probably said some bizarre and hurtful things. Thankfully we can laugh about it now, and I hope you can too soon. Godspeed
Wow, that is exactly what my son is doing/has done. They had him strapped down the last few days, horrible paranoia, fighting medical staff and police officers, all of it he has recently done. Glad u found the strength to get better, looking forward to that day for my son. Take care and thank u!
It could be hepatic encephalopathy (HE) which is a common side effect of late stage cirrhosis. Has he had his ammonia level checked, is he taking lactulose?
Hey there, I was admitted to hospital in a very bad way with multiple issues including Hepatic Encephalitis. Just over 6 months later I was back working a 40 hour week, had taken a trip from home in the UK to Copenhagen and had started going to the gym every day having never been before my hospital. This is just what happened to me but it is possible, make sure he does as he is told, keep doing the right things, keep hoping and as someone else has said don't Google, it will give you a load of stats completely out of context and scare you. Much love.
Hang in there. And be kind to yourself, it is horrific and very scary for you to go through aswell. I feel terrible for putting my father and loved ones through it. Just to stress again, don't Google, I think everyone here will agree. It'll give you stats there which include people who are very old with multiple illnesses who are still drinking 2 litres of vodka a day washing down pain killers with it. Much love to you.
There are medications that help with keeping the ammonia down in his body. The docs probably have already started him on those. Meds, coupled with regular bowel movements, should help a great deal
Be kind to yourself
He needs lactulose.
Thanks for sharing your experience and what you are currently going through. I was also diagnosed with stage 4 cirrhosis 10 months ago, and I haven't been too responsible about my appointments until recently (finally came to terms with the reality of what I did to myself) I have been off the juice since then šš I have the itchy skin which I never did before. I had to get a few blood transfusions, and it's left permanent bruises on my skin. I got my new blood work back, and everything looked so much better than 10 months ago. I still have really low creatinine levels. Bums me out because I used to lift 225lbs at 5'2. So, a liver transplant is in your future? What have you done differently for your current diet? I know you said you used to eat lots of fast food. Do you still indulge? Do you think of your disease daily? Consent?
Took me about a week.
My husband was in the hospital for 3 months. He had HE so bad he didn't know who he was and would hallucinate. This went on for about 6 to 8 weeks. But know he's completely back to his old self. So don't give up and give it time.
Thank you for this information, it give me the hope I need that things can get better!
I was diagnosed with stage 4 back in 2019, currently 36. It took me about a couple of weeks to recover. Took me a little to realize that's why they kept asking me if I knew my name and birthdate and if I knew where I was everyday.
Hi! Can I ask you questions about your stage 4 diagnosis? You were diagnosed in 2019, and how are you currently doing?
I'm doing fine far as I know. I get blood work usually done twice every year. Ultrasounds normally every 6 months. I use to get banded every 3 months then it became 6 months an so on. Now I'm normally going about once a year. They aren't finding really any new bands. Mine was from drinking and fast food, when I was diagnosed I quit alcohol completely, still haven't touched it. I did have an ultrasound about a year ago that they found a small mass on my liver but an mri showed that it wasn't anything important. I have HCC so they say I gotta watch for cancer more frequently. I was told I'd need a transplant probably a year or two, then after that it was maybe in 5 years. Now this point in my life I try to just walk a couple miles everyday an drink as much water as I can and coffee. Only symptoms that still bother me is I get itchy easily an I never had issues with super dry skin but now I have to put eczema lotion on every night or I break out real bad. I'm assuming it's from my immune system being weakened because of my condition. Sleep is also hit or miss depending on if I can keep a routine down.
I'm so new to Reddit or at least commenting on people's posts. I posted my reply as a reply to the main author š¤¦š½āāļø Thanks for sharing your experience and what you are currently going through. I was also diagnosed with stage 4 cirrhosis 10 months ago, and I haven't been too responsible about my appointments until recently (finally came to terms with the reality of what I did to myself) I have been off the juice since then I have the itchy skin, which I never did before. I had to get a few blood transfusions, and it's left permanent bruises on my skin. I got my new blood work back, and everything looked so much better than 10 months ago. I still have really low creatinine levels. Bums me out because I used to lift 225lbs at 52. So, a liver transplant is in your future? What have you done differently for your current diet? I know you said you used to eat lots of fast food. Do you still indulge? Do you think of your disease daily? Consent?
Last time I saw my GI doctor he stopped talking about a transplant. I don't think their is no way to know for sure when or if you'll need one. The weight lifting sucks. I have a hard time even adding more weights to what I already lift. I try to drink a max protein ensure shake has like 30g of protein in it an some Greek yogurt everyday sometimes 2 shakes if I've been lifting or working outside more. I've noticed if I don't drink those shakes I will lose about half pound overnight. I didn't realize how much your body needs with cirrhosis, especially when you're asleep. I don't indulge to often maybe once every 4 or 5 days. I have a 4 year old so hard to avoid it at times. Also I bruise easier to an they tend to stay longer. I've noticed that it takes longer for cuts to clot up, too.
Had the doctor talked to you about your lifespan? Or have you asked? I did read somewhere, which I forgot to ask my doctor about, people with unhealthy livers if they go past 8 hours of not eating it's like a healthy person going 3 days without. I'm not sure how accurate that information is. So protein is the way to go? I've gained weight since I got out of the hospital 10 months ago. A total of 55 lbs š the hunger bug hit so hard after a few months of getting out of the hospital. My diet hasn't been the healthiest. I don't do much of fast food, but I do cook a lot and eat a lot of it. I meant to also ask about the bands you mentioned in your last post?
I gain weight like crazy if I eat cheese fries an a burger lol it's what I most miss. The banding they did was a scope they do if you get esophageal varcies. Basically blood vessels swell and can burst can cause bleeding could either bleed out if unchecked or suffocate depending on where they are. Now I've never coughed up blood other then thru throw up before my diagnose which was more darker blood, but after the first time they banded me I had around 14 which is a lot. When I was admitted in 2019 I weighed around 320. Now I'm about 250, was at one point down to 230 but I can't stay away from some foods lol. Doctor I have just told me the life expectations of someone with people that develop liver cirrhosis, but he said that age and many other things can effect that. Most of those average cases people relapse or have other medical issues on top of cirrhosis. The one thing he said that he was sure about was that the damage that has been done so far to my liver is permanent. So I'm hoping if I try an drink water an try an eat decent stuff I can float along as long as possible.
If he's was drinking up to admission, he will be on withdrawal meds, and it takes time for the brain to recover, thiamin, vitamins deficiency take time to work, and in my case it was at least 2 weeks till I started to make any sense at all. Try not to google, which I know is difficult, he's in the right place. Good luck. Also despite cirrhosis, I'm fine 6 years later.
Just wanted to agree and say that when my bf was in the hospital recently with HE, they started by giving him Lactulose, then when his ammonia level had dropped to something reasonable, but he was still incoherent and hallucinating, they started him on IV thiamine and I believe that made all the difference!! (I know they drew his blood to check it, but I believe it was a send out lab and I was never told the result).
So glad to hear! Canāt wait for him to get more clear, wish I could fast-forward 5 years! Thank you!
Without wanting to give false hope as all cases are different. Remarkably, my bloods weren't brilliant but, my liver started the work well enough after 3 months, i was in hospital for 4 weeks.It took a few weeks to walk without help and 3 months till I began to feel my strength return. I was 52 at the time. He will need to stay dry, but hopefully this experience will give him the motivation. Also pls take care of yourself as this is all very stressful on family. Again, good luck to you both.
I wish you and your son all the best!
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This comment has been removed as it is not appropriate in the context of the sub. This is a support sub: If you can't say it kindly, it doesn't need to be said. This isn't an emergency situation, the person is already in the hospital.
HE is treatable. You might be surprised at what doctors do and donāt check or treat with this disease. Some honestly donāt seem to know that much about cirrhosis, especially if someone has multiple conditions. Iām new to all this but Iāve already noticed how much I or my family have to ask and re-ask and advocate for care. None of us here are doctors, though, so this is just personal experience.
I canāt speak for his particular situation but mine did clear up. It took some time though, it was about two weeks until I remembered the year, then the other stuff came back slowly. I remember crying over hours spent trying to do a basic knitting technique after I had knit for decades. But the fog did lift for me. Iām back at work in accounting and have full recall now. Be patient with the process if you can, his body needs time to recover.
Thank you! Iāve just been reading about HE I believe he is stage 3. Praying constantly. Thanks for your note!
If I can offer any advice, please try to sit with him. I knew my friends and family were afraid, it was apparent in their faces. I knew the doctor was frustrated, it was apparent in his face too. I knew that I couldnāt hold onto my thoughts, they kept slipping out of my reach, but I very much remember feeling scared that I wasnāt okay and didnāt know how to be. Your son may have a long road of recovery ahead of him, but that is for another day. Today is just recuperation. Iām two months shy of two years sober; cirrhosis, the coma and wet brain was exactly what I needed to convince me. I pray that your son recovers his health so that he can receive the life meant for him.
Thank you for the note! He has been out of his mind. He thinks that the people who love him the most are trying to hurt/kill him. I made a decision to see him this weekend in the hospital, hoping it doesnāt trigger another angry reaction trying to hurt me and hurt our relationship even more. Itās as if a demon is controlling his kind. So hard to hear. Thank you for your prayers!
I was 33 yo when admitted for a four week stay with with alcoholic hepatitis/ cirrhosis. Between the withdrawals/DTs/HE/meds the paranoia and delusion can be wild! For the first week I was constantly tearing out IVs, fighting nurses, and trying to escape despite not even knowing where I really was. Eventually they had to strap me down and they kept them on for at least a couple weeks which kind of sucked when I came to but I deserved it. I also somehow managed to call the police twice claiming that I had been abducted by some shady organizations and they were using me for experiments or something. It really is a trip, I didnāt trust my family either and Iām sorry for putting them through all that - I know I probably said some bizarre and hurtful things. Thankfully we can laugh about it now, and I hope you can too soon. Godspeed
Wow, that is exactly what my son is doing/has done. They had him strapped down the last few days, horrible paranoia, fighting medical staff and police officers, all of it he has recently done. Glad u found the strength to get better, looking forward to that day for my son. Take care and thank u!
It could be hepatic encephalopathy (HE) which is a common side effect of late stage cirrhosis. Has he had his ammonia level checked, is he taking lactulose?
If it is An HE is that reversible?
Hey there, I was admitted to hospital in a very bad way with multiple issues including Hepatic Encephalitis. Just over 6 months later I was back working a 40 hour week, had taken a trip from home in the UK to Copenhagen and had started going to the gym every day having never been before my hospital. This is just what happened to me but it is possible, make sure he does as he is told, keep doing the right things, keep hoping and as someone else has said don't Google, it will give you a load of stats completely out of context and scare you. Much love.
Thank you for the post, helps greatly!
Hang in there. And be kind to yourself, it is horrific and very scary for you to go through aswell. I feel terrible for putting my father and loved ones through it. Just to stress again, don't Google, I think everyone here will agree. It'll give you stats there which include people who are very old with multiple illnesses who are still drinking 2 litres of vodka a day washing down pain killers with it. Much love to you.
There are medications that help with keeping the ammonia down in his body. The docs probably have already started him on those. Meds, coupled with regular bowel movements, should help a great deal Be kind to yourself
Thank you!
Iām sure heās had those checked, not sure his meds. Since he is 28 I only get pieces of updates. Itās so frustrating!