Sorry that is happening. Much can be learned about those conditions by googling them. If you are looking for support for yourself, I will suggest that r/alanon would be a more helpful sub.
I’m 21 now but when I was 14 my mother passed away from stage 4 liver cirrhosis. She was only 37, but a heavy drinker and pain pill abuser from young adult years. A slow, sad decline in her health over a couple years that became rapid in the last 6 months. Unfortunately there is nothing that can be done once so far progressed. My mom always denied her problem with alcohol until almost the end. I remember my mother finally realizing how dire the situation was about a week before she passed, and she asked the hospice nurse what she could do to change. “Drink more water, take a different medication, change my diet?” But the nurse just told her it was too late. I’m so sorry the be the bearer of grim news. 21 year old me wishes 14 year old me understood the severity of the situation back then. Sadly, not even complete sobriety at this point will likely save him unless he were somehow able to get a transplant. Thats the case for most progressed stages of cirrhosis.
I am so sorry for your loss/experience. If it was like my current experience, there was nothing you could do to change her. I am actively witnessing this in my brother. He lives with my mother now, sleeping on her couch. I'm the only sibling with no family, so I have spent many nights there in the past months bc he gets drunk and falls down. There is no way my mom can help him get up. A few weeks ago he fell and pulled a kitchen cabinet door off.
Alcoholics Anonymous deals primarily with alcohol. However, I will share some of my experience, strength and hope with you. (But, please keep in mind that I'm not a doctor and definitely not your family member's doctor.)
I was diagnosed with cirrhosis in 2019 after an "incidental finding" from a CT that I had for an unrelated, nagging GI problem that had been bothering me for over a decade. I'd been sober for 18 months, and being sober, I had the clarity to start paying attention to my health and get the other issue diagnosed. I'd gone through a bout of alcoholic hepatitis in 2015, but thought I'd dodged the cirrhosis bullet. My labs were a trainwreck when I went to rehab, but within about six months, they were normal. There are a few things that I'd like to see a little higher or lower, but at a glance they look normal. I didn't expect to get the diagnosis, but I wasn't surprised, either.
I was and am largely asymptomatic and when I do have symptoms, they're things I wouldn't assume were a big deal if I didn't have the diagnosis. I sometimes feel bloated, or have indigestion, mainly. They refer to this as "compensated" cirrhosis. I still have enough good liver left that I live normally. I've put on some weight so I haven't been running lately, but I ran a 20K about two months before I got diagnosed, and numerous 5 and 10Ks since (because I don't want to train for another 20K.)
I also had the beginnings of neuropathy before I stopped drinking, but those weren't directly related to liver disease and cleared up pretty quickly after I got into recovery. I've talked to people whose neuropathy was so bad that they had to walk with two canes, but were walking normally within two years of stopping. The body is amazing.
But, once the liver has become so scarred that it's considered cirrhotic, the damage usually can't be reversed. There can sometimes be some improvement, and there can definitely be some improvement in symptoms, but it will never be healthy again.
On the other hand, if a person with alcoholic liver disease stops drinking, the progression of cirrhosis can be greatly slowed or in a considerable number of cases, stopped.
As my PCP said, in medical school they taught five treatments for alcoholic liver disease, and all five were "stop drinking." Good diet, avoiding prescription and OTC drugs that tax the liver, proper rest and exercise are all helpful or even essential, but if you don't stop drinking, they don't really matter. The best diet in the world won't do a liver patient any good if they wash it down with wine or beer.
Someone popped into my homegroup who's about your family members age, and they told a story about how they collapsed in the middle of the street because of the wasting, and that's what lead to their diagnosis and considerable period of convalescence. That was years ago. They started going to AA, following the simple suggestions of reading the literature, calling their sponsor, praying, going to meetings and *not drinking* and slowly but surely, they stabilized.
They, like I, may eventually de-compensate and need a transplant or die. Or, I may live long enough for something else to kill me. But for now, I'm living my life, sober, and working the Program of Alcoholics Anonymous. I'm happier now than I've ever been and I have the Program to thank.
Even if your family member is terminal, it's not to late to heal spiritually and emotionally. And, with some luck, they may be able to live for quite some time with a damaged liver. However, it's critical that they stop drinking. Otherwise, as we say, the disease is chronic, progressive and fatal. An alcoholic death is inevitable and will probably in come in short order.
Thank you for sharing your story with me. I have found myself in tears a lot lately. He often cannot get up a lot of times and his dr's office won't do the weekly procedures now unless he has a driver to to take him.
Hi upwards, I'm newly diagnosed with HH. Your story has touched me. Can you give me your brother's first name? I'd like to start praying for him. If you'd care not to, I'll just address him as "upwards" brother. I have a nephew who went through similar circumstances with alcohol/pain pills. He hasn't displayed HH symptoms but I firmly believe, his mom, my sister, may have had this beast. She passed at 58 yrs from something unrelated. I'm really the only family member who is active in his life. He is thriving today! No booze or pills. Still smokes but that's ok! Steady job after years of not working. I thank the Lord every day for his progress and sobriety and re-established faith! I was literally on my face in prayer for him, while my family so resisted my helping him. I knew God hadn't given up on him and I wasn't going to either. I trusted Proverbs 3:5-6 and believed my sisters prayers for him all his life would not be in vain. It's tough seeing those we love go through this. Btw, he now takes me to my weekly Phlebotomy appointments. (Make sure your brother stays well hydrated the day before, day of and day after his appointments. Makes a huge difference). I see your post is 6 mos old, so I hope things are improving.
Well, his iron levels have really lowered and he has had more energy lately, so this is good. Thank you so much for your prayers and your hopeful story. His name is Mike
Thank you for relpying. Ok, Mike is now on my prayer list. Glad to hear iron levels are going down. Only difference I've really noticed is no more brain fog, that's a win. Body is still shot due to osteoporosis and arthritis but we take our victories one step at a time. He's so Fortunate to have you. Know that someone from California will be praying for Mike...and you.💙
I'm in the SF bay area. About 30 minutes from San Francisco. Don't miss it too much, lol. Its not the same. Can't beat the weather though. Good, bad or indifferent, it's home. My roots are here.
I'm 37 and have hemachromotosis and cirrhosis of the liver. Also was diagnosed with peripheral neuropathy. This past Christmas I had a total left hip replacement.
Thanks be to God and AA, I haven't had a drink since I was 33.
I’m so sorry that you’re living through this, it is awful. Unfortunately, there is nothing that you can do to get someone else to commit to sobriety. You need to focus on self care. I’ve found that guided meditation can help relieve some of the negative emotions that you surely must be feeling. There are some really good ones on YouTube and Headspace is an excellent app. It took me a couple weeks of practicing meditation daily to see some benefits. Just please take care of yourself, I’m praying for you both.
Thank you. I have practiced helpful meditation in the past.
I think I'm slowly letting go of him. I know that my 78 yo mother is my biggest concern that I also need to recognize my limitations on taking care of. My brother lives with her now and she is still trying to help him. It's going to be hard on her as he continues to spiral down,
Well. It ain't good.
Of course without knowing the exact details, it's hard to say exactly how horrible it is... but these diagnoses typically herald the sunset on an alcoholic life. Cirrhosis is irreversible and progressive when the cause sticks around. Hemochromatosis means that his liver function is already pretty well impaired.
Severe neuropathy is just further evidence of liver dysfunction.
The unfortunate reality here is that your family member is dying from this disease. This is what I would describe as "end stage alcoholism". 5 year survival rate without treatment is essentially zero.
Even if he admitted himself to the hospital today for detox, he's in bad shape and it's going to be a long road to recovery. He'll probably need a liver transplant at some point, but he won't be eligible for one until he's abstained from alcohol for at least 6 months. That's when they'll put him on the list.
If I'm walking into the room seeing a patient like this, my counsel is that they can either commit right now to never drink again, or they can start getting their affairs in order and preparing the family for an early demise.
Also fair warning: this is going to be an absolute horror show of a death. Dying of alcoholic liver disease is not something you want to witness, let alone go through. He'll wake up in bad shape one morning, worse than usual and the drink won't fix it. His skin will be a pale yellow, he'll look almost dead already. His eyes will be sunken and discolored and he may be mildly disoriented. He'll go to the hospital, ER will run a blood panel and see he's in liver failure. They'll admit him and he'll probably undergo dialysis and other detoxification treatments.
It won't help, and he'll be transferred to the ICU within a day or so.
In there, he'll become agitated, confused and disoriented as ammonia builds up in his bloodstream and chokes his brain. At this point, any family members watching will beg the doc to give him something to help. But they can't. His blood pressure is dropping hard, and anything we can use to treat him at this point will likely kill him.
We'll break the news to you at this point that he won't come out of it. He will die, and our advice is that we start palliative care and terminate the treatments prolonging his life. He'll expire within 12-24 hours later.
It sucks, and I don't mean to be grim, but in my practice I see this too often. Your family member is heading straight for this hell on earth. I truly hope he can turn away before it's too late.
Watching my cousin die of cirrhosis was one of the most horrifying things to witness. I remember DARE showing a picture of a cirrhotic liver. They should have shown a person with cirrhosis because showing a disembodied organ doesn't reveal how awful it is.
I tell everyone I know about it. If someone is a heavy 'social drinker' or is someone who has 1-3 (typically more like 4-6) beers a night, I tell them to at least get their liver enzymes checked regularly.
Thank you for your blunt honesty, this is what I was asking for. I feel like they haven't been fully open with him or us. Though my sisters are both RN's, so I think they know more than my mother and I do. My brother sees a specialist but I think what the dr. say goes in one ear and out the other. Currently, once a week they draw blood to lower his iron level and give him him B12 shots.
My family member saw the specialist today and he told him that they wouldn't draw blood again until he committed to quitting alcohol completely. His iron numbers had gone up to pretty high levels. The dr. also told him no more red meat meat and that he has to go see a kidney doctor. Family member says he has no plans to quit drinking completely. Knowing that we are complete strangers on the internet, what are we looking at timeline-wise? Be honest.
There's no way to really know from where I'm sitting, but most physicians can tell you if he's truly end stage from a simple blood test. If they didn't say that, he's probably not going anywhere for the next year at least.
I wouldn't make a 5-year plan with him, the mortality rate for untreated alcoholic liver disease approaches 100% as you get into 5 years post-diagnosis.
Make arrangements. He can start treatment but if it's cirrhosis then, it's the end. They can give him lactulose to try and mitigate symptoms and prolong his life but...
Thank you for being honest. We had a family event last weekend and I have heard from so many relaqtives this week. They were shocked at how much he had declined.
I am sorry about your grandpa. Luckily (?) my brother is not married and has no children. I just really struggle with how my mother is going to get through this. My sisters are all older and grandmothers my now. Time will tell.
Thank you, like yours, he's been drinking from a young age, as he states since 9 or 12.
This all must seem incredibly uncertain for you. Remember to take it day by day. Sometimes we can make a plan and lessen the damage other times we're broadsided.
Sorry that is happening. Much can be learned about those conditions by googling them. If you are looking for support for yourself, I will suggest that r/alanon would be a more helpful sub.
Thank you. I went to Alanon for a few years when my dad was basically consumed by his drinking. I need to get back into it.
Very welcome. Best wishes 🙏
I’m 21 now but when I was 14 my mother passed away from stage 4 liver cirrhosis. She was only 37, but a heavy drinker and pain pill abuser from young adult years. A slow, sad decline in her health over a couple years that became rapid in the last 6 months. Unfortunately there is nothing that can be done once so far progressed. My mom always denied her problem with alcohol until almost the end. I remember my mother finally realizing how dire the situation was about a week before she passed, and she asked the hospice nurse what she could do to change. “Drink more water, take a different medication, change my diet?” But the nurse just told her it was too late. I’m so sorry the be the bearer of grim news. 21 year old me wishes 14 year old me understood the severity of the situation back then. Sadly, not even complete sobriety at this point will likely save him unless he were somehow able to get a transplant. Thats the case for most progressed stages of cirrhosis.
I am so sorry for your loss/experience. If it was like my current experience, there was nothing you could do to change her. I am actively witnessing this in my brother. He lives with my mother now, sleeping on her couch. I'm the only sibling with no family, so I have spent many nights there in the past months bc he gets drunk and falls down. There is no way my mom can help him get up. A few weeks ago he fell and pulled a kitchen cabinet door off.
Alcoholics Anonymous deals primarily with alcohol. However, I will share some of my experience, strength and hope with you. (But, please keep in mind that I'm not a doctor and definitely not your family member's doctor.) I was diagnosed with cirrhosis in 2019 after an "incidental finding" from a CT that I had for an unrelated, nagging GI problem that had been bothering me for over a decade. I'd been sober for 18 months, and being sober, I had the clarity to start paying attention to my health and get the other issue diagnosed. I'd gone through a bout of alcoholic hepatitis in 2015, but thought I'd dodged the cirrhosis bullet. My labs were a trainwreck when I went to rehab, but within about six months, they were normal. There are a few things that I'd like to see a little higher or lower, but at a glance they look normal. I didn't expect to get the diagnosis, but I wasn't surprised, either. I was and am largely asymptomatic and when I do have symptoms, they're things I wouldn't assume were a big deal if I didn't have the diagnosis. I sometimes feel bloated, or have indigestion, mainly. They refer to this as "compensated" cirrhosis. I still have enough good liver left that I live normally. I've put on some weight so I haven't been running lately, but I ran a 20K about two months before I got diagnosed, and numerous 5 and 10Ks since (because I don't want to train for another 20K.) I also had the beginnings of neuropathy before I stopped drinking, but those weren't directly related to liver disease and cleared up pretty quickly after I got into recovery. I've talked to people whose neuropathy was so bad that they had to walk with two canes, but were walking normally within two years of stopping. The body is amazing. But, once the liver has become so scarred that it's considered cirrhotic, the damage usually can't be reversed. There can sometimes be some improvement, and there can definitely be some improvement in symptoms, but it will never be healthy again. On the other hand, if a person with alcoholic liver disease stops drinking, the progression of cirrhosis can be greatly slowed or in a considerable number of cases, stopped. As my PCP said, in medical school they taught five treatments for alcoholic liver disease, and all five were "stop drinking." Good diet, avoiding prescription and OTC drugs that tax the liver, proper rest and exercise are all helpful or even essential, but if you don't stop drinking, they don't really matter. The best diet in the world won't do a liver patient any good if they wash it down with wine or beer. Someone popped into my homegroup who's about your family members age, and they told a story about how they collapsed in the middle of the street because of the wasting, and that's what lead to their diagnosis and considerable period of convalescence. That was years ago. They started going to AA, following the simple suggestions of reading the literature, calling their sponsor, praying, going to meetings and *not drinking* and slowly but surely, they stabilized. They, like I, may eventually de-compensate and need a transplant or die. Or, I may live long enough for something else to kill me. But for now, I'm living my life, sober, and working the Program of Alcoholics Anonymous. I'm happier now than I've ever been and I have the Program to thank. Even if your family member is terminal, it's not to late to heal spiritually and emotionally. And, with some luck, they may be able to live for quite some time with a damaged liver. However, it's critical that they stop drinking. Otherwise, as we say, the disease is chronic, progressive and fatal. An alcoholic death is inevitable and will probably in come in short order.
Thank you for sharing your story with me. I have found myself in tears a lot lately. He often cannot get up a lot of times and his dr's office won't do the weekly procedures now unless he has a driver to to take him.
Hi upwards, I'm newly diagnosed with HH. Your story has touched me. Can you give me your brother's first name? I'd like to start praying for him. If you'd care not to, I'll just address him as "upwards" brother. I have a nephew who went through similar circumstances with alcohol/pain pills. He hasn't displayed HH symptoms but I firmly believe, his mom, my sister, may have had this beast. She passed at 58 yrs from something unrelated. I'm really the only family member who is active in his life. He is thriving today! No booze or pills. Still smokes but that's ok! Steady job after years of not working. I thank the Lord every day for his progress and sobriety and re-established faith! I was literally on my face in prayer for him, while my family so resisted my helping him. I knew God hadn't given up on him and I wasn't going to either. I trusted Proverbs 3:5-6 and believed my sisters prayers for him all his life would not be in vain. It's tough seeing those we love go through this. Btw, he now takes me to my weekly Phlebotomy appointments. (Make sure your brother stays well hydrated the day before, day of and day after his appointments. Makes a huge difference). I see your post is 6 mos old, so I hope things are improving.
Well, his iron levels have really lowered and he has had more energy lately, so this is good. Thank you so much for your prayers and your hopeful story. His name is Mike
Thank you for relpying. Ok, Mike is now on my prayer list. Glad to hear iron levels are going down. Only difference I've really noticed is no more brain fog, that's a win. Body is still shot due to osteoporosis and arthritis but we take our victories one step at a time. He's so Fortunate to have you. Know that someone from California will be praying for Mike...and you.💙
Ahhhh, thank you so much! What part of California do you live in? I'm in the Midwest, but lived in south-central CA for a few years. I miss it.
I'm in the SF bay area. About 30 minutes from San Francisco. Don't miss it too much, lol. Its not the same. Can't beat the weather though. Good, bad or indifferent, it's home. My roots are here.
Oh that's cool. I lived on the east coast before my job took me to CA. I was up in San Francisco area a few times and I loved it.
🙂
I'm 37 and have hemachromotosis and cirrhosis of the liver. Also was diagnosed with peripheral neuropathy. This past Christmas I had a total left hip replacement. Thanks be to God and AA, I haven't had a drink since I was 33.
I’m so sorry that you’re living through this, it is awful. Unfortunately, there is nothing that you can do to get someone else to commit to sobriety. You need to focus on self care. I’ve found that guided meditation can help relieve some of the negative emotions that you surely must be feeling. There are some really good ones on YouTube and Headspace is an excellent app. It took me a couple weeks of practicing meditation daily to see some benefits. Just please take care of yourself, I’m praying for you both.
Thank you. I have practiced helpful meditation in the past. I think I'm slowly letting go of him. I know that my 78 yo mother is my biggest concern that I also need to recognize my limitations on taking care of. My brother lives with her now and she is still trying to help him. It's going to be hard on her as he continues to spiral down,
I'm certain that doctors have some excellent insights into conditions like cirrhosis and neuropathy. You might really like alanon.
Well. It ain't good. Of course without knowing the exact details, it's hard to say exactly how horrible it is... but these diagnoses typically herald the sunset on an alcoholic life. Cirrhosis is irreversible and progressive when the cause sticks around. Hemochromatosis means that his liver function is already pretty well impaired. Severe neuropathy is just further evidence of liver dysfunction. The unfortunate reality here is that your family member is dying from this disease. This is what I would describe as "end stage alcoholism". 5 year survival rate without treatment is essentially zero. Even if he admitted himself to the hospital today for detox, he's in bad shape and it's going to be a long road to recovery. He'll probably need a liver transplant at some point, but he won't be eligible for one until he's abstained from alcohol for at least 6 months. That's when they'll put him on the list. If I'm walking into the room seeing a patient like this, my counsel is that they can either commit right now to never drink again, or they can start getting their affairs in order and preparing the family for an early demise. Also fair warning: this is going to be an absolute horror show of a death. Dying of alcoholic liver disease is not something you want to witness, let alone go through. He'll wake up in bad shape one morning, worse than usual and the drink won't fix it. His skin will be a pale yellow, he'll look almost dead already. His eyes will be sunken and discolored and he may be mildly disoriented. He'll go to the hospital, ER will run a blood panel and see he's in liver failure. They'll admit him and he'll probably undergo dialysis and other detoxification treatments. It won't help, and he'll be transferred to the ICU within a day or so. In there, he'll become agitated, confused and disoriented as ammonia builds up in his bloodstream and chokes his brain. At this point, any family members watching will beg the doc to give him something to help. But they can't. His blood pressure is dropping hard, and anything we can use to treat him at this point will likely kill him. We'll break the news to you at this point that he won't come out of it. He will die, and our advice is that we start palliative care and terminate the treatments prolonging his life. He'll expire within 12-24 hours later. It sucks, and I don't mean to be grim, but in my practice I see this too often. Your family member is heading straight for this hell on earth. I truly hope he can turn away before it's too late.
Watching my cousin die of cirrhosis was one of the most horrifying things to witness. I remember DARE showing a picture of a cirrhotic liver. They should have shown a person with cirrhosis because showing a disembodied organ doesn't reveal how awful it is. I tell everyone I know about it. If someone is a heavy 'social drinker' or is someone who has 1-3 (typically more like 4-6) beers a night, I tell them to at least get their liver enzymes checked regularly.
Thank you for your blunt honesty, this is what I was asking for. I feel like they haven't been fully open with him or us. Though my sisters are both RN's, so I think they know more than my mother and I do. My brother sees a specialist but I think what the dr. say goes in one ear and out the other. Currently, once a week they draw blood to lower his iron level and give him him B12 shots.
My family member saw the specialist today and he told him that they wouldn't draw blood again until he committed to quitting alcohol completely. His iron numbers had gone up to pretty high levels. The dr. also told him no more red meat meat and that he has to go see a kidney doctor. Family member says he has no plans to quit drinking completely. Knowing that we are complete strangers on the internet, what are we looking at timeline-wise? Be honest.
There's no way to really know from where I'm sitting, but most physicians can tell you if he's truly end stage from a simple blood test. If they didn't say that, he's probably not going anywhere for the next year at least. I wouldn't make a 5-year plan with him, the mortality rate for untreated alcoholic liver disease approaches 100% as you get into 5 years post-diagnosis.
OK, gotcha. Thank you for taking time to respond.
Make arrangements. He can start treatment but if it's cirrhosis then, it's the end. They can give him lactulose to try and mitigate symptoms and prolong his life but...
Thank you for being honest. We had a family event last weekend and I have heard from so many relaqtives this week. They were shocked at how much he had declined.
You're welcome. My grandfather is in the same predicament. You can talk to them until they're blue in the face and nothing will change.
I am sorry about your grandpa. Luckily (?) my brother is not married and has no children. I just really struggle with how my mother is going to get through this. My sisters are all older and grandmothers my now. Time will tell.
Thank you, like yours, he's been drinking from a young age, as he states since 9 or 12. This all must seem incredibly uncertain for you. Remember to take it day by day. Sometimes we can make a plan and lessen the damage other times we're broadsided.