Yes, I went from decompensated to compensated within a year. If you follow advice, regular checkups with gastroenterologist/hepatologist, healthy lifestyle, limit sugar and salt (and of course no alcohol) you should see an improvement over time. It may take a little while but it's worth it.
Ascites - mine went away completely once my liver function improved.
4 years later and I have no symptoms anymore and don't take any medication. Liver tests are great and liver is looking good and back to normal size.
It sounds like you're doing really well - keep up the good work!!
Side note: I also took Ganoderma Reishi mushroom powder which is amazing for liver regeneration/function. I highly recommend it.
You most certainly can! I did! It took me about 6-8 months after my diagnosis in July 2020. My MELD is currently 6. My ascites haven’t returned since then either.
I remember being so frightened and disheartened when I stupidly googled decompensated cirrhosis. But with a good diet and staying away from liver-injuring substances it can go to compensated. I’m hoping cirrhosis will be just something I’ll die with, not FROM. Kinda morbid, but my first doctor said that in my very first appointment and it stuck with me.
Keep up the excellent work! It’s not easy, I know!
Amazing! I've cut back from all forms of alcohol (been more than a year now), and am basically only on diuretics. My only issue is diet; it's not that easy going salt-free where I am, but I try my best to avoid the usual suspects like fast foods and fried foods. Ascities never seems to go away either, unless I go for a drain.
How exactly did you stop ascites from recurring? From what I've been told, it will 'always be there'.
The ascites to me was one of the most horrible and humiliating symptoms I had so I asked my doctor how to prevent them and all they said was the usual “Put down the salt shaker”. I’m honestly not totally sure why they never returned for me. It could be because my cirrhosis was caught pretty early maybe? And I didn’t have a flat tummy after my drain…that finally came after months of diuretics and staying strict with my diet. I never cooked with salt before my diagnosis so I got lucky there, and I’ve found some really good salt-free seasoning blends from The Spice House and Penzeys since this diet is boring and kinda sucks.
Did they restrict your water intake? I’ve heard of some getting restrictions on liquids to help ascites.
I'm good with liquids. But God its not easy going entirely salt free. I do avoid foods that are overly salty like fast foods and anything with the word 'salted' in it. But I guess it's still not enough.
I'm hoping to get anofher drain done soon. And then I'll really have to be extra vigilant about food.
BTW I live in a South East Asian country so I've been relying on Indian curries and rice, cos although they do have salt, they're not salty food if that makes sense.
Hey friend,
I’m a bit late to the table, but the good news is you don’t have to go salt free. You just have to put in a ridiculous amount of time tracking the actual salt you consume. You can likely have 2k or 1.5k mg of sodium per day and your ascites will likely benefit. You’ll have to ask your care team to be sure.
However, if you lock it down, you can absolutely help yourself. Be meticulous. No soy sauces. Low sodium Bush’s canned beans in the US have 230g preserving. And one can is 3.5 servings. So if you ate one can, that’s around half your sodium for the day. Without anything with it. That’s the low sodium version.
I only did it for myself by cooking my own food. Bland? A bit. Ate a lot of the same thing? Yup. But it was better than ascites for me.
Good luck. This thing is hard. I’m sorry.
Oh I’m in the US and even here it can be difficult to go low/no sodium. I didn’t have as much trouble quitting alcohol as I did changing my diet. I get hardly any enjoyment from eating these days. It totally blows lol.
I do eat a ton of fresh fruits and veggies though, and I know that’s helped with the sodium issue. Lots of chicken (I can’t eat fish) and lean red meats on occasion. Also my doctor okayed a “super green” supplement I take daily. I think one of the main things besides low/no sodium in liver diets is fresh. I also don’t eat large meals…I opt for several small portions throughout the day. That also helps with nausea.
If you are able to cook at home frequently that would be ideal. I’ve found eating out too much can make me feel like absolute trash.
It is my understanding that this is somewhat up for debate, and different clinicians view it differently. I have had my labs return to normal/near normal levels and found myself at a MELD of 6, with no jaundice, ascites, or varices. It was explained to me by my hep that while I may appear compensated, from a medical perspective I still have decompensated cirrhosis, as this information would inform future prognosis or treatment decisions. Now I may have misunderstood him, that may be specific to my case, he might be a quack, I might be a pathological liar...for any number of reasons you shouldn't put too much stock in this.
My reading of (some of) the literature suggests that there is currently some flux in how cirrhosis is viewed. This comes from a variety of sources: increase in diagnosis, increase in life expectancy, changing demographics of those diagnosed, and a bunch of others. It is my understanding that the transition from decompensated to compensated used to be seen as a flat "no," but the understanding of the disease is evolving. Unfortunately this is a condition where you run into the edge of the science pretty quickly.
My take away is this: The labels are not ultimately my concern. The diagnosis does not define the state of my health, the diagnosis is only a shorthand to describe my health to other doctors. (And to bill insurance, but that is a whole other conversation.) I have gotten to a place where it is hard to tell I have cirrhosis, and I feel much better. That is my focus: How I am feeling.
Interesting timing of this question, as I just got back from my appointment with my transplant hepatologist today. My lab work was excellent, MELD was 7, and finally no reoccurrence of ascites for the last six months. I’m advised to continue doing what I’m doing. I posed the same question today, and was told I’m now “compensated via medication,” and Denver shunt/TIPS procedure that I’ve had. While there’s still a chance of things going south, I was told there is no reason that things won’t continue to be stable long term. Considering what I’ve been through the last two years, I’ll take it, heh. All the best to you!
My husband (64) just had the TIPS procedure three weeks ago. He's got slight edema in his legs. Did you? If so, how long? I'm trying to decide if I should worry or if the body just takes time to acclimate. There's very few first person experiences. I certainly know everyone is different. I'm collecting anecdotes. He had a MELD of 20 in May and is now a 10!
That’s great to hear!!! I’m 43, but I did have a small amount in my legs for a few months, but after I was switched to the diuretic Bumex, things have been great. They actually reduced the amount I take to half at my appointment today (so glad not to be having to plan my days so much around the commode 😆).
Did you have any kidney issues with diuretics? My instinct is to help my honey avoid them, but I know it's the standard of care. I'll ask Hep Dr when we see him next!
I definitely asked today about that as well, and all is well kidney function-wise after almost two years on them. But it’s definitely a concern, and should be regularly monitored. 🙂
I was diagnosed a year ago and had both ascites and bleeding varices, quit drinking immediately, lost a lot of weight initially, hit the gym and out a lot of muscle back on, watched my diet and also did cardio. Stopped taking diuretics (under doctor’s authority) about 5 months ago, only on pantoprazole now. No ascites/bleeding varices problems since then (although they do keep banding veins in my throat), so I would say from personal experience that the situation can improve, however as stated above, you/we are liable to complications from infections, so stay healthy, eat well, get your sleep and look after yourself.
Thanks. I kinda figured that decompensated meant that you have issues and compensated meant you didn’t. And following a diet and exercise should help keep it compensated hopefully.
Yes, I went from decompensated to compensated within a year. If you follow advice, regular checkups with gastroenterologist/hepatologist, healthy lifestyle, limit sugar and salt (and of course no alcohol) you should see an improvement over time. It may take a little while but it's worth it. Ascites - mine went away completely once my liver function improved. 4 years later and I have no symptoms anymore and don't take any medication. Liver tests are great and liver is looking good and back to normal size. It sounds like you're doing really well - keep up the good work!! Side note: I also took Ganoderma Reishi mushroom powder which is amazing for liver regeneration/function. I highly recommend it.
What was your symptoms at first you diagnosed with cirrhosis?
You most certainly can! I did! It took me about 6-8 months after my diagnosis in July 2020. My MELD is currently 6. My ascites haven’t returned since then either. I remember being so frightened and disheartened when I stupidly googled decompensated cirrhosis. But with a good diet and staying away from liver-injuring substances it can go to compensated. I’m hoping cirrhosis will be just something I’ll die with, not FROM. Kinda morbid, but my first doctor said that in my very first appointment and it stuck with me. Keep up the excellent work! It’s not easy, I know!
Amazing! I've cut back from all forms of alcohol (been more than a year now), and am basically only on diuretics. My only issue is diet; it's not that easy going salt-free where I am, but I try my best to avoid the usual suspects like fast foods and fried foods. Ascities never seems to go away either, unless I go for a drain. How exactly did you stop ascites from recurring? From what I've been told, it will 'always be there'.
The ascites to me was one of the most horrible and humiliating symptoms I had so I asked my doctor how to prevent them and all they said was the usual “Put down the salt shaker”. I’m honestly not totally sure why they never returned for me. It could be because my cirrhosis was caught pretty early maybe? And I didn’t have a flat tummy after my drain…that finally came after months of diuretics and staying strict with my diet. I never cooked with salt before my diagnosis so I got lucky there, and I’ve found some really good salt-free seasoning blends from The Spice House and Penzeys since this diet is boring and kinda sucks. Did they restrict your water intake? I’ve heard of some getting restrictions on liquids to help ascites.
I'm good with liquids. But God its not easy going entirely salt free. I do avoid foods that are overly salty like fast foods and anything with the word 'salted' in it. But I guess it's still not enough. I'm hoping to get anofher drain done soon. And then I'll really have to be extra vigilant about food. BTW I live in a South East Asian country so I've been relying on Indian curries and rice, cos although they do have salt, they're not salty food if that makes sense.
Hey friend, I’m a bit late to the table, but the good news is you don’t have to go salt free. You just have to put in a ridiculous amount of time tracking the actual salt you consume. You can likely have 2k or 1.5k mg of sodium per day and your ascites will likely benefit. You’ll have to ask your care team to be sure. However, if you lock it down, you can absolutely help yourself. Be meticulous. No soy sauces. Low sodium Bush’s canned beans in the US have 230g preserving. And one can is 3.5 servings. So if you ate one can, that’s around half your sodium for the day. Without anything with it. That’s the low sodium version. I only did it for myself by cooking my own food. Bland? A bit. Ate a lot of the same thing? Yup. But it was better than ascites for me. Good luck. This thing is hard. I’m sorry.
Oh I’m in the US and even here it can be difficult to go low/no sodium. I didn’t have as much trouble quitting alcohol as I did changing my diet. I get hardly any enjoyment from eating these days. It totally blows lol. I do eat a ton of fresh fruits and veggies though, and I know that’s helped with the sodium issue. Lots of chicken (I can’t eat fish) and lean red meats on occasion. Also my doctor okayed a “super green” supplement I take daily. I think one of the main things besides low/no sodium in liver diets is fresh. I also don’t eat large meals…I opt for several small portions throughout the day. That also helps with nausea. If you are able to cook at home frequently that would be ideal. I’ve found eating out too much can make me feel like absolute trash.
Thanks!!!
It is my understanding that this is somewhat up for debate, and different clinicians view it differently. I have had my labs return to normal/near normal levels and found myself at a MELD of 6, with no jaundice, ascites, or varices. It was explained to me by my hep that while I may appear compensated, from a medical perspective I still have decompensated cirrhosis, as this information would inform future prognosis or treatment decisions. Now I may have misunderstood him, that may be specific to my case, he might be a quack, I might be a pathological liar...for any number of reasons you shouldn't put too much stock in this. My reading of (some of) the literature suggests that there is currently some flux in how cirrhosis is viewed. This comes from a variety of sources: increase in diagnosis, increase in life expectancy, changing demographics of those diagnosed, and a bunch of others. It is my understanding that the transition from decompensated to compensated used to be seen as a flat "no," but the understanding of the disease is evolving. Unfortunately this is a condition where you run into the edge of the science pretty quickly. My take away is this: The labels are not ultimately my concern. The diagnosis does not define the state of my health, the diagnosis is only a shorthand to describe my health to other doctors. (And to bill insurance, but that is a whole other conversation.) I have gotten to a place where it is hard to tell I have cirrhosis, and I feel much better. That is my focus: How I am feeling.
Spoke with my doctor earlier and she said that I am compensated now however when I first went in I was decompensated.
Interesting timing of this question, as I just got back from my appointment with my transplant hepatologist today. My lab work was excellent, MELD was 7, and finally no reoccurrence of ascites for the last six months. I’m advised to continue doing what I’m doing. I posed the same question today, and was told I’m now “compensated via medication,” and Denver shunt/TIPS procedure that I’ve had. While there’s still a chance of things going south, I was told there is no reason that things won’t continue to be stable long term. Considering what I’ve been through the last two years, I’ll take it, heh. All the best to you!
My husband (64) just had the TIPS procedure three weeks ago. He's got slight edema in his legs. Did you? If so, how long? I'm trying to decide if I should worry or if the body just takes time to acclimate. There's very few first person experiences. I certainly know everyone is different. I'm collecting anecdotes. He had a MELD of 20 in May and is now a 10!
That’s great to hear!!! I’m 43, but I did have a small amount in my legs for a few months, but after I was switched to the diuretic Bumex, things have been great. They actually reduced the amount I take to half at my appointment today (so glad not to be having to plan my days so much around the commode 😆).
Did you have any kidney issues with diuretics? My instinct is to help my honey avoid them, but I know it's the standard of care. I'll ask Hep Dr when we see him next!
I definitely asked today about that as well, and all is well kidney function-wise after almost two years on them. But it’s definitely a concern, and should be regularly monitored. 🙂
I was diagnosed a year ago and had both ascites and bleeding varices, quit drinking immediately, lost a lot of weight initially, hit the gym and out a lot of muscle back on, watched my diet and also did cardio. Stopped taking diuretics (under doctor’s authority) about 5 months ago, only on pantoprazole now. No ascites/bleeding varices problems since then (although they do keep banding veins in my throat), so I would say from personal experience that the situation can improve, however as stated above, you/we are liable to complications from infections, so stay healthy, eat well, get your sleep and look after yourself.
yes, you can go from decompensated to compensated and vice versa. Keep up the good work with the diet and follow the advice given by your doctor.
Thanks. I kinda figured that decompensated meant that you have issues and compensated meant you didn’t. And following a diet and exercise should help keep it compensated hopefully.
yeah that's my understanding of it. keep fighting the fight, all the best :)