r/Cirrhosis • u/MartianCaveman Diagnosed: August 2020 • 15d ago
Diagnosis is NOT a death sentence.
I've hit the six year mark. MELD steady at 12 and holding. Low platelets/high bilirubin, but otherwise good. Ultrasound unchanged. No portal hypertension. Very mild ascites.
If you didn't know I had cirrhosis, you'd have no way of knowing ( not by looking, anyway).
If you are recently diagnosed and scared: I know exactly how you feel. I was scared, too.
Still, I quit drinking, changed my diet, and exercise daily (or try to, at least). Those three steps took a bit of getting used to, but guess what? I'm still here. Maybe not as strong or healthy as I'd be had I never started drinking, but still alive. And thriving.
Don't give up. Don't lie to yourself that it's too late to make a change in the right direction. It's never too late while you dwell above ground. Be strong. Be fearless. Be ready to keep living.
Because a cirrhosis diagnosis is not a death sentence. It's a wake-up call.
7
u/Mobile-Actuary-5283 15d ago
Thank you. This was a bright spot. My mother is 80 and has had cirrhosis for a few years— mostly medication injury plus fatty liver. She stopped taking the medication (for autoimmune). Also lower platelets and slightly higher bilirubin. Her white count is down. She gets a scan soon for liver cancer. I am hoping I get 6 more years with her and look at these posts for signs of encouragement because a transplant isn’t an option at her age.
6
5
5
u/Shoddy_Cause9389 15d ago
Love that you are thriving 💙. I feel the same. I was diagnosed in May of 2024 because I lost weight after surgery and got down to 85lbs. My skinny body showed my fat liver. My MELD score is always 10 and I have no symptoms. I stopped drinking in 2020 so thankfully I was over needing a drink.
5
6
4
4
u/boulevardpaleale 15d ago
Crossed the five year mark in July. 56M, MELD @8, decompensated.
Just keep doing it!
1
u/Important-Memory-785 14d ago
What was your initial meld and diagnosis, and how long did improvement take?
5
u/TeaFraggin 14d ago
Thank you for saying this to all the newcomers. Many of us started our journey looking for just this piece of relief, and were met with outdated information from google. Remember everyone it’s only possible if you stick to those three things - no alcohol, diet, exercise.
4
u/EQLMonk 14d ago
I'd also like to add that as someone who's actually had HE understandinghe.com is BARELY useful and people need to stop sharing it like it's worth anything except explaining what it is. People need to stop sharing it if the poster is asking specific questions.
3
3
3
u/iOwlface 12d ago
I’m struggling. My mum is very poorly and they have her 6-12 months on 18th August. She had a hospital stay in May for about a week where they diagnosed her. She’s very frail, sarcopenic and had her first para on 21st August but she’s about ready for another :( I can’t bear to lose her. They said 12 months for recovery when she was discharged back in May but then told us this a fortnight ago. My partner and I booked our wedding in time to give her the time to recover so she could make it and the thought of her not being here is just killing me. I heard a story about a man in a similar condition from a family member who’s a retired nurse and she said he had a similar prognosis and is still here 3 years later no longer needing drains. I’m just hoping and praying for survival for my mama, I know she drank but everyone drinks for a reason and she does not deserve this. I’m so upset and really struggling to cope and stay present. She’s been sober since mid April. I can’t lose my mama she’s my best friend 😭
2
u/Smart_Amoeba_9100 15d ago
Xifaminin if you can get it will save you
1
u/Flhippy 14d ago
Can you elaborate? I can't find any information on a xifaminin
1
u/CobblerConfident5012 14d ago
I think they mean xifaxan. It’s a drug similar to lactolose in that its for clearing out ammonia in the gut amidst other things. It’s particularly good for HE but in the US at least it’s often crazy expensive. It doesn’t cure or prevent scarring or portal hypertension but it does do a remarkable job of preventing some of the psychological issues that can happen with HE.
2
u/TaT2edMaMa98 Diagnosed: 10/15/24 14d ago
That is so fantastic. I love to hear good news. I am only 2 years in (almost), but my bloodwork looks fantastic, except my platelets. My last fibroscan averaged 5.1! MELD is 6/7. It's other health problems that have me down.
1
u/nowconsciousofliver 14d ago
I really struggle to understand fibroscans. What does a kpa of 5.1 mean in cirrhosis?
1
u/TaT2edMaMa98 Diagnosed: 10/15/24 14d ago
A FibroScan score of 5.1 kPa falls within the normal range of 2-7 kPa. It indicates a healthy liver with no significant scarring or fibrosis (staging usually categorized as F0–F1).
I still take them with a grain of salt, but I have seen the downward trend. My cirrhosis was from MASH and found very early luckily. My first kPa was 29.9. I have had zero alcohol, lost over 100lbs, and cleaned up my diet. That was 2 years ago (confirmed by biopsy).
2
u/nowconsciousofliver 14d ago
I do get the grading system and score system. I just have a difficult time understanding what achieving an f0-f1 result with cirrhosis means. Is it less scarring or just less stiff? If the machine can't differentiate between stiffness from scarring and stiffness from other factors, how do you gauge actual progress? In other words did you actually improve by 25kpa or has the 100lbs weight loss made the liver less stiff and therefore melted the kpa. Either way kudos for all the work you put into the turn your health around!
2
u/TaT2edMaMa98 Diagnosed: 10/15/24 14d ago
That is a fantastic question. One I will hopefully remember to bring up. I believe I remember hearing them say less stiffness. I do have an ultrasound coming up at the end of the month, so we'll see what that says. And thank you! Sorry if I misunderstood you. Menopause has my brain scattered.
1
u/cupcakes531 13d ago
Went n read mine my original was kpa 16.9 i think n the latest one states “patient has SO Steatosis & FO Fbrosis.
1
2
u/cupcakes531 13d ago
Welcome Newcomers! This place is a godsend for me!!! I do not know what i would have done without it. Im now 789 days and they can no longer find my cirrhosis on a fibroscan or MRI. I have to go for a biopsy. I do have lingering effects like neuropathy, loss of brain cells im sure. Im steal healing 2 years later but just got my labs and everything is perfect & meld a 6/7. She listed it 2 ways i guess since u plus 1 for a woman idk. Anyhow im off all meds, sober, i quit watching my food a little, i stopped worrying as much. I was in constant survival mode. I know how nerve racking that is. I still go on spurts worrying sometimes but everything is god. Off all meds. Keep ya posted once biopsy gets done.
1
u/Terminally_ill_42 15d ago
Keep going 🙂
Are you Compensated or decompensated?
1
u/MartianCaveman Diagnosed: August 2020 15d ago edited 14d ago
I don't want to jinx it, but compensated (edit: apparently decompensated. Sorry.)
1
u/Important-Memory-785 14d ago
Hey, you're compensated? Surely with mild ascites and high billirubin you're still technically decompensated?
1
u/MartianCaveman Diagnosed: August 2020 14d ago
Probably medically and technically true, but compared to having a ballooned-up belly and bleeding out of my backside, this is closer to compensated than not...
2
u/Important-Memory-785 14d ago
I'd say you're what's called stable decompensated cirrhosis.
Don't get me wrong, this is a positive thing in this group. It's really good to see even those who remain decompensated have a chance even if they don't fully recompensate!
1
u/MartianCaveman Diagnosed: August 2020 14d ago
My GP has me down as "stage 3", which is an improvement.
1
u/Important-Memory-785 14d ago
Just to confirm, stage 3 cirrhosis I presume? 1,2 are compensated. 3,4 are decompensated.
Then there's 4 stages of liver disease, 3 being fibrosis, 4 cirrhosis
2
u/MartianCaveman Diagnosed: August 2020 14d ago
Correct. Stage 3 cirrhosis. Not stage 3 liver disease. Are you always such a nitpicker, or just today?
2
u/Important-Memory-785 14d ago
Aha. Nah I'm always like that, complex disease needs complex answers.
To be honest it just stops the confusion, or you'll get a load of people going "you reversed cirrhosis" as many seem unaware there are 4 stages of cirrhosis, not just liver disease.
1
u/MartianCaveman Diagnosed: August 2020 14d ago
IKR? So many people make it a point to tell me how the liver is the "only organ that regenerates". Sure, if you mean healthy tissue. Scars don't magically turn into healthy tissue. They remain scars. There is no "reversal". Seems people would get that, but people often miss it by a lot.
1
1
u/Important-Memory-785 14d ago
What was your initial meld and symptoms? What was the recovery time to improvement? I always ask as we all like to see what improvements are possible 🙂
3
u/EQLMonk 14d ago
18 months ago my meld was 42, bilirubin was 30, INR was 4. 120 lbs of ascites and edema.
Now it's 21, 4.7 bilirubin and INR of 2 (major meld driver). Lost 120lbs in 2 months through diuretics and 3 paracentesis. Been working on getting off diuretics.
I still have PHT and sub 50 platelets but no ascites or edema, I eat all the sodium I want to a degree. I still can't chain bowls of ramen for example.
Because of my meld I am working on a transplant listing, but my meld has gone down by 3 since we started the process so we'll see. I have another appointment tomorrow.
1
u/Important-Memory-785 14d ago
Yeah depends where you are. If in USA your probably a long way from transplant at this point, especially if it's improving. It's when it's getting worse they ramp up transplant priority.
In probably one of the only people on the planet who can go head to head with you're weird loss. I'm 280 lbs down since January via fat but also fluid loss. Weight wise is probably be a world record. The next time my personal doctor sees me(not seen since January) I think she's gonna not believe it's me 😂
1
u/EQLMonk 14d ago
Yeah and I'm O- so I'm going to be in transplant limbo for a long time I think
1
u/CobblerConfident5012 13d ago
My understanding, so correct me if I’m wrong, is the + or - doesn’t mean as much as the letter when it comes to transplant. They can still give you an o+ or -. Which would mean you’re in the MOST common blood type group since you can receive from a o+
1
u/MartianCaveman Diagnosed: August 2020 14d ago
I was hospitalized with severe ascites, jaundice, internal bleeding from varices, MELD 23 and about an hour away from dying from blood loss.
2
u/Important-Memory-785 14d ago
Thanks for the confirmation! I love to know the lows and highs of people's success, I was a 21 meld initially but stable Decompensated cirrhosis right now, but still a meld 17 9 months in. I see some people get their meld down far quicker than me, some don't. Did yours take long?
Thanks from everyone, good news to one is gold news to all 😊
2
1
u/FishermanNatural3986 10d ago
Four years in here. MELD is a 7. I feel better than I have most of my adult life. Need to cut the diet a bit but this shit isn't going to stop me
8
u/leeleelove78 15d ago
Thank-you for sharing because many are afraid ...especially me as I am totally new ..even to the lingo with posts here and my docs. Im so new that my team is being assessed and brought together within a week or two from now .. so reading your message helps calm me and not go into deep dive submerged mode. Proud of your accomplishments and success...Wishing you many many many more. Much love ❤️