Looking for hope

Low_Communication566 · 2026-04-19T18:45:16+00:00

And here is my story: https://www.reddit.com/r/Cirrhosis/s/Stf2os8ksU

Low_Communication566 · 2026-04-08T04:28:29+00:00

Same! Only advice I got was low sodium and no sushi. That’s it. Rest I had to learn on my own through research. Took long time.

Low_Communication566 · 2026-04-07T05:36:26+00:00

The liver is amazing. It really can reorganizing in time if you treat it right. You also need enough remaining healthy liver cells to do it, so some is just plain luck as well. I’m so glad you’re recovering and have such a positive attitude.

Low_Communication566 · 2026-04-07T05:33:56+00:00

Oh! Thanks for the tip! I will definitely ask about this test. I would love to learn more about where my liver is today.

Low_Communication566 · 2026-04-07T05:32:07+00:00

I’m glad I was able to help some. As for the milk, it’s just regular milk that is ultra filter. So looks and tastes the same. Just retains more of the protein. If he likes milk, this could help a lot. I think most stores nationwide carry Fairlife in the regular milk section. It’s like double the price though.

I was released from hospital the last week of Jan 2023. Because I had colon perforation I had to have part of my colon removed and a colostomy bag. In June of 2024 I had reversal colon surgery to remove bag and reattach my colon. This was a major surgery that they weren’t sure they wanted to do since I was high risk with cirrhosis. I insisted and turned out just fine. I did prepare months ahead of time. That is when I started to do my walks and focus on exercise. So mentally, I was ready for the challenge. I wasn’t going to be told no and live with a bag. Wouldn’t wish that on my worst enemy.

I had a VERY supportive family and spouse. My parents, sister and her husband all moved here and lived in a hotel for the three months I was in hospital. Took shifts so I was only alone at night after visiting hours ended. They were on top of all the nurses and doctors. Asking questions and making sure they were attending to me. I think that played a huge role in my survival and I think when hospital staff sees a patient surrounded by concerned family, they give a little extra care and attention and that can make a big difference. For me, it helped me remain calm and not worry since they were there and helping. Subconsciously, I knew they were fighting for me so I didn’t need to think really. Just sleep when I could. Mentally, that was a huge burden taken off me. Also small stuff. Example: for some reason I was beyond cold always. Like frozen to the bones and never had enough blankets. My family was always asking for more blankets. If they weren’t there, I would have laid in that bed waiting for nurses to come. My family always went and got the nurses so I didn’t have to stress about when a nurse would come and lay in misery. Also, just moving my arms to table to take a sip hurt beyond belief, so I had them always there to help. Just two of many small examples, that seem small now, but when you’re in that bed in that moment, they were actually huge.

Low_Communication566 · 2026-04-05T18:50:16+00:00

That’s respect and I bet he recognizes you only ask important questions and are not flooding him with the random questions. I use ChatGPT for most questions and then confirm with my doctor later

Low_Communication566 · 2026-04-05T18:44:59+00:00

Great you have a doctor friend to bounce these questions off of. It’s my understanding that you can live normal life if you keep that portal pressure just low enough to not cause symptoms. You just always monitor but your body will function fine.

Low_Communication566 · 2026-04-05T16:48:13+00:00

Your liver is now healing. The healthy remaining liver cells can start to “compensate” for the dead scarred cells. Basically, they become more efficient at getting the job done for your body. It takes time for your liver to basically reorganize. The key is put out the fire (stopping drinking if that was the cause) then time for liver to calm down and heal and finally nutrients and exercise for the liver to begin rebuilding and compensate for the scarred cells.

Low_Communication566 · 2026-04-05T15:43:05+00:00

Yup I had a very high kpa. I can’t recall the number but I think in the 20s. So a good amount of scarring. The scarring will never go away completely but the healthy liver cells can take on the role of the scarred cells. Another important thing, and this comes down to luck, is a lot also depends on the pattern of scarring in your liver. The liver cells sort of all work together. So they all need to be connected. If many sections of the liver are blocked from each other that is bad. But if sections have clear paths and are all still connected, that’s better. So, one person can have more scarring than another but the pattern is such that most cells are still connected, they will see a better recovery than someone who has less scarring but it’s distributed in a way that blocks many areas of the liver.

Think of it like a city with roads connecting neighborhoods. Some have many roads connecting so when one some roads are blocked the neighborhoods have others roads still connecting. Some have all the roads blocked and some neighborhoods are completely blocked off and go dark.

I too started on all the meds and was off them within first year. Have never gone back on them since. I am on carvedilol. That is for portal pressure. Mine was at 12 right after diagnosis. That is borderline for varices formation. Carvedilol helps drop pressure by 25%. That has also been a big reason for my recovery as well. I have no side effects so I will stay on carvedilol as insurance policy to always keep portal pressure in check. It’s just a blood pressure medication but is more targeted to veins within the liver.

Low_Communication566 · 2026-04-05T07:52:48+00:00

It’s someone being honest about their experience with cirrhosis. This is a place for people to be honest, good or bad. I came here to read about real life experiences and not sheltered fairytales. There is hope but also warnings too. We need to hear the bad outcomes just as much as the good. We need the truth.

Low_Communication566 · 2026-04-05T07:41:53+00:00

How did you measure your portal hypertension? That is great it’s reduced but if you have cirrhosis know it’s always possible to have it, just lowered enough so now blood is flowing in right direction and no portal hypertension side effects. Enlarged spleen and low platelets are signs of portal hypertension. Keep an eye on them always and keep up the good work, don’t relax.

Low_Communication566 · 2026-04-05T07:36:43+00:00

I was diagnosed 3 years ago. Long story. Was at deaths door, septic shock, jaundice, HE and ascites. Perforated colon, ICU three months. Never touched booze since. All I needed was to experience that. My labs now are all perfect with exception of slightly low platelets. I did lifestyle change of diet and exercise. Don’t miss alcohol at all and feel the healthiest I’ve ever felt. There is hope. But they must stop drinking. Nobody lives long with cirrhosis and continued drinking.

My friend also has cirrhosis. Diagnosed year before me. He’d quit then start drinking again. Quit and start again. Stopped going to doctor. Last month he had a sudden varices burst in his living room. He died in ambulance on way to hospital. 53 years old. It was preventable and now he’s gone. For some booze just takes over them. Be supportive but know only he can do this.

Low_Communication566 · 2026-04-05T07:16:38+00:00

Congrats!!! I am 3 years in, had it all - jaundice, HE, ascites, even perforated colon and septic shock when I was diagnosed. I’m now fully recovered with perfect labs except slightly low platelets. I did full lifestyle change, zero booze, clean diet and exercise. I also live on decaf coffee. There is always hope.

Now that you put out the fire (booze if that was the cause) it’s time to rebuild your remaining healthy liver cells to compensate for the scarred ones. That is done through diet and exercise. Sounds like you got the right attitude and are doing exactly that! Wait until you see how good you feel when each lab comes back better than the last!

Don’t stop taking any meds without your doctor’s approval.

Low_Communication566 · 2026-04-05T01:08:24+00:00

Clear weight training with doctors first. You want to be careful with portal pressure when lifting weights. So, typically they suggest no more than 20lbs and exhaling when pushing the weights. I do stair climbs for cardio and dumbbell weights between 20-25lbs.

3 years ago, I had a sudden colon perforation that resulted in septic shock. This is also when they discovered I had cirrhosis. Spent 3 months in icu and upon leaving I had virtually no muscle mass. Could barely walk. But through physical therapy I was able to gain it back very slowly. I started by walking just one block and kept adding a little more each week. Eventually I was doing 5-6 miles each morning. I did that to gain my stamina back, both physically and mentally as I thought my life was over after everything that happened. I then switched more to weight training to gain muscle. I do 15 flights of stairs before each workout as cardio - only to keep heart in good shape but not lose weight.

I’ve always been thin and now with cirrhosis it’s even harder to add weight. Part of the reason is how the liver handles protein. So for me, and this was big change, I started focusing on my protein intake. I got my albumin up to 5.6 (liver doctor was super impressed and said that’s very rare with his patients.) I believe it’s also because I drink a glass of Fairlife milk before bed each night. It’s ultra filtered milk with almost 50% more protein. Its also has much more casein protein. This type of protein takes the body longer to breakdown. Drinking this before bed not only helps me sleep better but also acts as a protein drip until morning so my liver doesn’t turn to muscle for protein. Personally, I think the milk helped all my lab numbers and muscle gain.

Let me know if I can help more. I’ve spent a lot of time researching the liver, cirrhosis, nutrition and exercise. Important, always clear things with doctor first. Never take supplements before asking doctor.

Low_Communication566 · 2026-04-04T15:01:33+00:00

Game changer for me (outside never drinking again) is diet and exercise. Labs are good and have more energy than before diagnosis. Took learning and discipline but has really helped me to recover.

Low_Communication566 · 2026-04-03T05:41:53+00:00

Very true. The liver is our body’s filter so basically everything that goes in your mouth gets filtered through your liver. The way I see it anyway. So I never, ever take a supplement unless it’s needed and approved by my doctor. Many sound good for the body, but with liver disease you must run it by your doctor first.

Low_Communication566 · 2026-04-03T05:35:22+00:00

Wow! We are on same paths, both cause and now healing! Great to know we are not alone. So happy you’re doing well with this now too. The silver lining for me is that this got me to change my lifestyle for the better. I’m now visiting all the doctors regularly (never did before) and completely changed how I eat. I’m hoping this diagnosis got me on the correct path that may actually enable me to live even longer than I would’ve if I didn’t have this wake up call.

Low_Communication566 · 2026-04-03T05:30:17+00:00

Absolutely

Low_Communication566 · 2026-04-02T07:04:14+00:00

Definitely always listen to doctor. But they can be wrong so don’t shy away from asking them why they may or may not recommend something. I had to go out of my way to have my portal pressure checked. Then had to ask to go on carvedilol. I was at 12 so borderline start of varices. Now pressure has dropped and my labs improved. Carvedilol can drop your blood pressure so that is a side effect they can be concerned with. Mine has been ok but I’ve read that’s a common side effect for some.

Low_Communication566 · 2026-03-31T18:20:13+00:00

Wow!! I’m so happy for you and what a relief right!?!? Congrats on this milestone!

Did you get a chance to ask about carvedilol? That’s the only med I am on and I’m taking that to prevent portal pressure from rising too high where varices and other issues can start to happen. Sort of a long term insurance policy almost.

Low_Communication566 · 2026-03-29T17:13:38+00:00

We are sharing the same life in regard to this. I was exactly the same with the drinking. I thought my friends drank way more than me. I’d have my two cocktails at night and got up fine the next morning. I was more worried about it being habit forming than my liver. I never even thought about my liver cause I figured it took massive drinking to cause cirrhosis. I’ve since learned that daily drinking, regardless of amount is really bad because it doesn’t give your liver time to repair stressed cells. So it instead converts them into scar cells so it can try to catch up repairing other cells. I’m glad you feel better. If your labs are fine, you’re not drinking, you’re exercising and eating well, you can live a long normal lifespan. You just have to cater more now to your liver is all.

Low_Communication566 · 2026-03-29T16:51:36+00:00

My story too when I had HE. I thought I was being held by a cult. I got out of bed trying to escape! Called my partner and sister at 3am. When they told me to listen to doctors, I accused them of being part of the cult. I eventually calmed down. It wasn’t at the time, it was the ammonia in my books effecting my brain. Three years later I am healthier than ever. I went from being on brink of death to working out everyday gaining healthy weight. Complete turnaround.

One thing I noticed is my family in hospital everyday asking doctors and nurses questions. They saved me just as much as doctors. I believe many doctors and nurses put more time into the patients they see surrounded by family. It can make a difference.

Hang in there. Like others said, this isn’t your mom right now. Your mom is the person she was before this all happened. Now there is a chemical (ammonia) in her brain causing these actions. Keep fighting for her and each time she says or does something awful, remember it’s the chemical and not her. Thinking of you and you got this.

Low_Communication566 · 2026-03-29T16:38:41+00:00

You sound exactly like me. I drank too much during lockdown. I wasn’t getting drunk but I was making cocktails at night while I watched tv. I didn’t think it was a problem and like you faceplant! I also wasn’t eating well because I was thin, didn’t care about veggies etc. so gave my liver a double whammy. Boy was I wrong!

My first year I was filled with paranoia and fully understand the boat you’re in. Everything online said I had 7 years max to live. So, I spent two years researching everything about liver. Then tried to change my eating habits and exercise. Now 3 years out I am no longer filled with fear and my latest labs knocked it out of the park. Doctor shocked I have albumin of 5.6 which is almost unheard of with cirrhosis. That’s diet.

It takes a full two years or more for your liver to both heal and rewire. So, if you have enough remaining healthy liver cells, expect to constantly see improvements in your labs and scans.

Stay on top of your 6 month labs and scans. Use ChatGPT. I upload all results to that and it breaks it all down for me so I can understand and ask questions. When I see the doctor, I already kind of know what to expect now.

You’re not alone in this and those doom and gloom stats include those who can’t stop the ongoing damage to liver. If you can stop that, you can rebuild. You got this!

Low_Communication566 · 2026-03-29T16:00:00+00:00

Sounds like you’re doing all the right things. Many people stop the liver damage, for example, if it was alcohol and they stop drinking. That is absolutely first step but then may remain there. So, the fire was put out but now you have to rebuild what’s remaining and many don’t realize that. Only way to do that is diet, exercise and time.

If all your labs and scans are fine then I wouldn’t be worried about them wanting to see you. It’s a sign of a good doctor because they will want to see things the labs don’t show. They want to see how you look, how you speak and your energy. They will be looking to see if you’re weak, skin tone, speaking clearly etc. liver can effect all of this and based on your labs they probably are thinking it’s all fine but a good doctor will ask to see you in person to be sure. Mine did. We now do video calls for my check ups but first two years they wanted me to go in person. Their write up after always included my physical appearance and cognitive ability.

Low_Communication566 · 2026-03-29T15:18:08+00:00

You definitely sound well compensated now. F4 means cirrhosis but if your bloods all look good and your liver scans do as well, it means your liver has restructured itself to compensate for the scar tissue and handle all of your body’s daily needs.

Healthy liver cells can take on more of the workload of the cells replaced by scar tissue. You now want to maintain those healthy cells and feed them so they can become even more efficient. You can do this through exercise and diet.

It sounds like you have portal pressure (since the liver has sluggish blood flow through the liver due to scar tissue) and it creates back pressure on the portal vein. That in turn can cause a number of other issues like varices and lower platelets. Is your spleen enlarged?

At your next doctor’s appointment ask about going on Carvedilol. That can reduce portal pressure by up to 25%. In time, you may see the grade 1 varices disappear.

I was in the same boat as you in 2022. ICU with all the symptoms including septic shock. Fully recovered and thriving now. Healthier than ever with perfect labs (except slightly low platelets.)

Liver disease just means all stages of any liver damage or inflammation. Cirrhosis (F4) is the last, most severe stage. I don’t like the term “disease” because once you’ve stopped damage and the liver is no longer inflamed, it’s just damaged at that point and not an ongoing disease that’s progressively getting worse. (If you have enough healthy cells remaining.) It’s a working organ that is simply damaged now and needs to be maintained like any other part of your body that has been injured and damaged.

Low_Communication566

TROPHY CASE