Almost out of the woods?

[Jimmywaz]

Hi all, hope all is good out there, I’m a bit confused and it’s not my HE.

Just received a letter from my consultant I’m pleased about it but not sure what to make of it.

Dear mr .....

Further to you clinic visit, I have good news.

Your blood tests show continued improvement and your MELD score has dropped to 9. This is really excellent and think shows you are almost out of the woods.

Can anyone tell me what almost out of the woods means with regards to being diagnosed with compensated cirrhosis stage 4 and portal hypertension, I would ask him but it will take a long time for a response.

Does this mean by out of the woods the stages of cirrhosis are going backwards ie I might be at stage 3 or 2 now??? I’ve just had scan recently but didn’t mention what stage just MELD I know what MELD score is but still confused does this mean I can start to look to the future and make plans, I know my life expectancy isn’t going to be too good I’m 38 I mean can you get 20 more years out of a liver, I know it’s a difficult question to answer does he just mean out of the woods that I don’t need a new liver???

Ps I know a lot of people struggle reading kind of success stories but believe me I know positive things are are sometimes hard to read when your feeling low and in pain. I’m still really depressed and confused about life and where to go from here..

[AyrshireK]

Hi Jimmy, all sounds really postive.

Obviously MELD score is the model for end stage liver disease and is used to determine life expectancy in end stage liver disease (a medical tool only and only a guide). The higher the MELD score the greater numbers of patients die within a shorter time scale, the lower then longer the life expectancy. Anything over 24 seems to be the bracket where transplant is necessary. Your score of 9 is brilliant - at the lower end of things.

In UK transplant system they tend to use UKELD which is the United Kingdom Model for End Stage Liver Disease and a score of 49 is the minimum for transplant listing (unless cancer is an issue and UKELD isn't then used).

Staging your cirrhosis is based on symptoms present - obviously the cirrhosis isn't going to go away but it is perfectly possible for someone at stage 4 to improve and go back down the scale (decompensated to compensated).

Stage 1 cirrhosis No Ascites / No Varices (compensated)

Stage 2 cirrhosis Varices / No Ascites (compensated)

Stage 3 cirrhosis Ascites / +/- Varices (decompensated)

Stage 4 cirrhosis Bleeding / +/- Ascites (decompensated)

My hubby was initially stage 4 but based on current scans/endoscopies etc. he'd be stage 2 now - minor varices but no ascites.

Concentrate and living life to the fullest, don't let the cirrhosis hold you back. Hubby and I began this journey 9 years ago - he gets on with life to the best he can, making the most of good days and writing off the bad. On Friday we did a 9 mile hill walk in the snowy Galloway Hills summiting the highest 'mountain' in Ayrshire. Life is for living.

Katie

[Str8jacket in reply to AyrshireK]

Does HE indicate Stage 3?

[AyrshireK in reply to Str8jacket]

Hepatic Encephalopathy can occur at any stage of either an acute liver failure or chronic long term liver disease. It is used in calculating Child Pugh score (along with bilirubin, albumin, INR and ascites) but not a factor in either MELD or UKELD score.

[Str8jacket in reply to AyrshireK]

Sure, but with respect to the 4 stage system for cirrhosis(quite a few staging systems to keep track of, even for cirrhosis!), it was my understanding that HE, like persistent low grade HE, is linked to stage 3? It is usually listed as a symptom of decompensation. I wonder if covert/minimal HE can regress/resolve like the other major symtpoms (jaundice, ascites, varices)? I understand that acute episodes of HE can pass/resolve.

For whoever is interested, here's an interesting discussion of the various forms of decompensation, causes of cirrhosis, and some of the treatments being used/developed. Fecal transplant to stabilize the gut seems interesting, I wish treatments were approved/tested more quickly.

journal-of-hepatology.eu/ar...

As I understand this piece, AIH, HCV, and HBV seem to have the best prospects for "recompensation" and regression of fibrosis, though recompensation also is possible with alcohol. The literature has been less clear to me on whether cirrhotic fibrosis regresses in ARLD.

With alcohol, perhaps more so than other etiologies, it seems that the gut is often especially degraded (of course everyone is different). This in turn can impede the stabilization of illness if bacterial toxins keep spilling into the blood causing continued inflammation and injury to the liver, even after one removes the direct harm/cause of injury. Rifaximin seems to be good for that in addition to HE specifically (it's underutilized here in the states). The linked article notes how Rifaximin/Xifaxan showed reductions in various complications, not just HE.

[JennerLayne in reply to AyrshireK]

The process of staging brings up questions for me. Many pieces I read illustrate liver disease is often staged as 1-4, with 4 being cirrhosis. So, is the listing above meant to be a sub category of cirrhosis once you've reached stage 4? I had a 2nd biopsy last week (first in 2013) and now I'm at Fibrosis stage 3, but I already have portal hypertension (11), Gr1 varies, GAVE (bleeding of the stomach), multiple AVMS in the duodenum and jejunem, and a recent scan showed mild ascites. I'm assuming these are just guidelines given each of us are so different?

[AyrshireK in reply to JennerLayne]

Yes cirrhosis itself is split into four categories as described above. In the Metavir scale cirrhosis is F4 - stage 4 fibrosis.

The full metavir stage system reads:-

F0 - No Fibrosis

F1 - Normal - Mild Fibrosis (Portal Fibrosis without septa)

F2 - Mild - Moderate Fibrosis (Portal Fibrosis with a few septa)

F3 - Moderate - Severe Fibrosis (Fibrosis with bridging septa/incomplete cirrhosis)

F4 - Severe Fibrosis / Cirrhosis / End Stage Liver Disease

[Jimmywaz]

I’m not sure if you can put HE into stages I take medication for mine and I have missed it for a few days on occasions and my have I noticed the difference, I feel as if I get confused and feel thick sometimes my brain dosnt switch on without them.But HE can be very serious some the episodes I had in hospital I try to forget.

Basically it’s a form of brain damage I think...

[Str8jacket]

Jimmy, great news! Passing on info I've seen repeated here and other sites--as your liver disease is caused by alcohol, try to get your six months of documented sobriety satisfied as soon as you can in case your condition ever takes a bad turn.

Hope you get to enjoy/celebrate the good news!

[Jimmywaz]

Sorry so it’s fibrosis at stages until progresses to cirrhosis at stages?, I was diagnosed stage 4 cirrhosis but improving so can stage 3, 2 or even 1 be possible in time?? And can portal hypertension improve?

These are questions I should ask my consultant and I will just takes a while to get answers... thanks

[AyrshireK in reply to Jimmywaz]

Once the liver reaches F4 or cirrhosis then it is unlikely to reverse to any lower level of fibrosis (F0-F3) but you were diagnosed stage 4 of cirrhosis(F4) so the highest level of decompensated cirrhosis - it is possible to reverse this to a degree and go back to compensated i.e. Stage 1, 2 cirrhosis or stage 3 (which would still be considered decompensated)but it is unlikely that full on cirrhosis will ever go away.

As previously stated my hubby was stage 4/decompensated cirrhosis on diagnosis with bleeding from varices. 9 years later he is compensated stage 2 but still has F4 fibrosis/cirrhosis. Hope that makes sense.

Katie

[Hidden in reply to AyrshireK]

Katie, I would like to know if portal hypertension can go away? As you describe it, it's the block of blood flow due to scar tissue. As cirrhosis isn't reversible, it seems logical to me that portal hypertension also cannot be reversed, because it's the direct result. Do I get that right?

[AyrshireK in reply to Hidden]

I couldn't answer that 100% but I think it can be controlled but not reversed - beta blockers can help reduce it and procedures like TIPSS can by pass the liver to reduce the side effects from portal hypertension.

My hubbies portal hypertension improved but only because his spleen died (after aneurysms in his splenic artery were embolized) so less blood is flooding towards the liver.

Katie

[Hidden in reply to AyrshireK]

Thank you, Katie! Now you mention the spleen. When the spleen is enlarged because of the portal hypertension, will that organ get smaller again once the hypertension is managed by medication?

[AyrshireK in reply to Hidden]

Can't really answer that since my hubby never had treatment for portal hypertension. His spleen was 19.5cm when he had full blown P/H but he never had beta blockers or TIPSS.

Katie

[Hidden in reply to AyrshireK]

Thanks again for your answer. Is it dangerous for a spleen to be so large? My doctors don't seem to bother too much. They say it's enlarged, but that the old spleen size system is not up to date, especially when you're a tall person. I can't find anything online about spleens, but they say there are three classes, minor, middle and high enlargement, and mine is considered to be middle.

[AyrshireK in reply to Hidden]

They don't seem to do anything about it unless it is extremely enlarged, there are risks with knocks and bumps and contact sports but hubbies never got a mention other than on scan reports and the fact it was gobbling up platelets - hypersplenism is extremely common in cirrhosis with portal hypertension. It's what contributes to low platelets, bleeds, easy bruising and blood clotting issues in cirrhosis.

Katie

[Jimmywaz in reply to Hidden]

I take beta blockers for mine I was last diagnosed with severe portal hypertension but no bleeding with grade 2 varcies a year ago so wonder if that could be better too like anna

[Jimmywaz]

Is there a difference between stage 4 cirrhosis and F4 fibrosis/cirrhosis?sorry for all questions,Thanks everyone

[AyrshireK]

F4 fibrosis is cirrhosis (F4) which is then split into 4 stages defined by symptoms present

Stage 1 Cirrhosis - No Ascites, No Varices

Stage 2 Cirrhosis - Varices, No Ascites

Stage 3 Cirrhosis - Ascites , with or without Varices

Stage 4 Cirrhosis - Bleeding, with or without ascites.

Is that making sense.

Katie

[Jimmywaz in reply to AyrshireK]

Thanks Katie a lot clearer now...

[Roy1955]

I think F4 is the diagnosis of when a poorly liver becomes a cirrhotic liver.The next numbers are how bad the cirrhosis is.

A Dr is better placed to explain it.

[Jimmywaz]

Got to now, thanks I’m a bit slow today thanks... well on that info I think I might be at stage 2 cirrhosis... thanks everyone I’m awaiting to get appointment with consultant just had a scan recently so will probs have to wait a while...

[Fernie21]

Hey Jimmy don’t lose hope you’re not that far removed and already showing improvement I’m not going to sugar coat it and it will not be easy but you’re young and you’re liver can heal might not be perfect but I’ve seen quite a few people here and on Reddit that have poor prognosis and have bounced back I know someone who was diagnosed with cirrhosis 3 years later she’s at F2 following doctors guidelines and no alcohol that is key the body can continue to heal you have youth on your side don’t lose hope hell even if worse case scenario you do require a transplant a liver transplant give you a full life expectancy! Stay positive!!

[Str8jacket in reply to Fernie21]

Cirrhotic livers can regain some function and stabilize, especially in those liver diseases that are caught early and see more reversal of damage such as treated viral hepatitis or AIH, but they generally do not "heal."

Another thing to keep in mind--many people who are hospitalized with serious liver issues may have an acute(short term) period of hepatitis (inflammation) that can shut down their liver and cause similar symptoms to cirrhosis (i.e. ascites, jaundice, etc.). If those people make it through and their livers are not fully scarred with cirrhosis, they can make a full recovery.

As far as someone going from cirrhosis to F2 in three years, that seems unlikely if not impossible. It's more likely one of those diagnoses was incorrect (which can happen--it's hard to accurately stage fibrosis even with a biopsy which can be unrepresentative). If it happened, I hope the case is reported in a medical journal.

Still, many on here and elsewhere have shown that with determination and perhaps a bit of good fortune it is possible to stabilize and fight liver disease for quite a while. Definitely inspiring. Everyone's path is different.

[Roy1955 in reply to Str8jacket]

Straitjacket

in a few weeks you have gone from a new member that was told by Drs that you dont have cirrhosis to a prolific poster cutting and pasting what your looking up on the internet.

Your not an expert, stop giving second hand advice.

[Str8jacket in reply to Roy1955]

If in your expert opinion I wrote something that's incorrect, enlighten me. Otherwise, if you don't like what I wrote, keep scrolling.

[Onesmallstep1969]

Cirrhosis is reversible. How much depends on how damaged your liver is, how much scarring exists. The key is to get rid of the underlying condition, eat a healthful diet, walk a bit and stay positive. Give your body a chance to heal and it will. Maybe not all the way but enough to give you a functional life, unless of course your damage is too extensive. But if you are at F4, that's early cirrhosis. The first goal is to stabilize, that is to say, not get worse, then give your body a chance to regress the cirrhosis to F3, which is fibrosis, just short of cirrhosis. Who knows, maybe then you can make it to F2 or better. Best of luck!