Why does it take so long

[Johnhstn]

As a bit of my history, I was admitted September, 2017 with decompenated cirrhosis and a meld of 42. I was considered a goner with my labs all out of whack, HE and ascites. I have been fortunate to improve greatly and now have a meld of 10 and child Pugh A. My diuretics have been stopped for 6 months and off lactulose since January. I feel good and am eating well, exercising and no alcohol sine September 21,2017. Latest labs are good and very close to normal but sometimes I get impatient and wish improvement was quicker. It has been 13 months and I wonder if improvement is going to continue. Has anyone had a long course as me. I am grateful though.Jds

[Hidden]

Hi and welcome to this wonderful forum john

Can you please explain (to me - others probably understand!) what further improvements you are looking for?

Miles

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[Johnhstn in reply to Hidden]

Hi twos miles,

I guess in my mind I thought improvement would reach a stable point much sooner. Instead I have small decreases in lots still and wonder when they might reach a non changing point. I still have cirrhosis and portal hypertension and those won't disappear. I am hoping to live a relatively normal life and hope not to need a transplant. As I said I am fortunate to be as active as I am. Am just trying to live with this disease and happily put up with the Drs appointments and meds and scans. All this happened to me very quickly to me one night (but not to others who were around me) and ended up with 31 day hospitalization.

John

[Hidden in reply to Johnhstn]

Aha

OK thanks John.

I can’t say because you had - apart from I didn’t do 31 days first hospital visit (although consultants told wife - but not me fortunately - that she didn’t expect me to be still alive after she got back from her hols lol) and my body was not as good at recovering as yours!

That’s an example of how not to write a sentence. In not more than twenty five characters explain what was wrong with that sentence...

Congratulations you got a grade 9 ( I believe that’s the best mark in the Goverment’s example of “now what can we do with all these government “employees” we have ? Ah yes I know, lets pratt about with education - noone seems to mind that - and give exam marks like we used to ; numerical results and not alphabetic results, and now wait for it, wait, lets give the marks from 1 to 9 where 9 is the best - SO much better than 30 years ago when it was 1 to 9 but 1 was the best. There you go - jobs for the boys for another few years. But wait, what about all the school computerised systems which will all have to be changed? Well school folk don’t have much to do, they can sort it instead of having all those holidays they don’t deserve.....

Oops I digress!

I ended up with a tp, best thing since sliced bread and definitely worth a Grade 9. 😁😁

Miles

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[Hidden in reply to Hidden]

Miles - that was a rubbish reply and didn’t help John at all...sorry John!

Miles

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[Melita17 in reply to Johnhstn]

Hello John, is your disease the same as liver cancer? My brother has been told he has a few months to live, tries to eat but brings everything up so losing weight rapidly. Did you experience this?

[moonbeam4]

I Undertand Totally. One Doctor finally said to me, ' look, it took you a long time to get like that". I can say that in my case apart from the cirhosis etc, i am back to normal and it has taken approx 2 and a half years. Healing was, even with exercise and a good diet, very, very slow!. At times i nearly dispaired, it was waiting and wondering if the swelling would ever go down that I found the worst, for a year my liver was so inflammed it was more comfortable to sleep sitting up, slumped forward in an armchair. You will get there, just remember how long it took for you to become so poorly, and be patient. Not easy I know, but one day you will suddenly say to yourself ' actually I feel quite good today". ☺

[KarenKLW]

Sounds like you’re doing amazingly well, good for you. I was diagnosed in 2013 with end stage cirrhosis, but with a very clean diet, stress control and exercise, I am also at a meld score of an 8-10. Never expected that to happen or to even be alive 5 years later. I’m on the transplant list but hopefully will never need it.

Now who knows? Lots of power green vegi drinks, supplements and organics make a huge difference in energy. No matter what, we have to be vigilant for the rest of our lives, but it’s worth it. Best of luck with your continued improved health.

[Centralperk in reply to KarenKLW]

Hi Karen,

My 16yr old Son has AIH with Cirrhosis. Can I ask which diet & drinks, supplements you use please.

He seems much more tired, & hasn't much of an appetite at the moment. Any advice you could give would be greatly appreciated.

He's going for an MRI SCAN tommorow& had his bloods done today.

Thank you in advance.

Naz.

[Marwan76 in reply to KarenKLW]

Hi Karen

it looks you do well , May you help to know which diet & drinks, supplements you use please.

[Hidden]

Everybody is different, With me it took 8 years from being really bad to transplant with years of remission where I managed to get on holiday although I at no time felt really well.

That have only happened after the transplant, if you still have cirrhosis and portal hypertension, it really impossible to predict, take each day as it comes, do what you can,

You are at least of the cliff edge.

Good luck I hope you road is short and end at a nice place soon

David

[Hidden]

With bloods all out of whack like that sounds like you had alcoholic hepatitis. A bad case of it presents exactly the same as decompensated cirrhosis. Has the Doctor ever mentioned that?

[Garyvh]

I agree with what Phoenix said. It does sound like you had alcoholic hepatitis.

I had this, and the serious symptoms (the same ones you had) came on fairly suddenly for me. While I was hospitalised they found I had cirrhosis too.

I think any recovery at all after an incident of acute alc hep means you are on the right path, so try not to be too impatient with yourself.

I've read that the first year after an incident, and how, and indeed IF, you recover in that first year can be used as a rough indicator of morbidity and life expectancy, so any recovery at all is something to be thankful for, you could've quite easily gone the other way (same for me too).

G

[Johnhstn]

Hi all, I did have alc hepatitis and decompensated cirrhosis. Had the HE and put on mess Still take xifaxin but hope to go off at next dr visit. Also portal hypertension and as cites. Was drained 4 times and then placed on diuretics. Couldn't earlier because kidneys didn't like what was going on. Have been off spiro and gyro since April with no recurrence. What a change in lifestyle. Hi Melina, no HCC yet. Hopefully never. I get scanned every 6 month with ultrasound MRI or Ct. I thank everyone for help here. I have lurked for some time. It's amazing how this makes you read and reach out.

[Hidden]

As someone has mentioned above, it took a long time to get into this condition, so you should really expect that it takes a while to get better. The fact you have improved so much in such a short space of time is miraculous in my humble opinion.

As an easy analogy, if you bent pipes over your knee every day for 5 years, you wouldn't probably notice much on a daily basis and then one day, you might feel something "go". Conclusion, "I was as right as rain and then it just went". The reality is, it didn't "just go", wear and tear happened over a long period of time and eventually your knee couldn't take any more. Just as it took 5 years to get to this point, it could take equally as long to "fix it". This is true for other parts of our body too. You look at your face every day and notice tiny changes,, but over a 10 year span, those tiny changes add up and suddenly you realise you look different, but think "How did that happen?" Your liver is the same- hopefully you get the picture. To expect a shorter fix is a tad optimistic. I think you should be looking at how well you are and celebrating that (without alcohol obvs), rather than thinking about "How much longer".

I'm afraid this may seem like a bit of a lecture, but I for one would be enormously grateful if my liver damage went into reverse. However, since my immune system is attacking my liver, this is not going to happen. If someone told me it could take 2 years to get the results you're getting, I would be shouting "Woohoo" very loudly. A lot!

Hope you can take this in the spirit (well it is Hallowe'en) it is meant and I wish you well on your road to recovery

[Hidden]

Hi Johnhstn,

My husband is still improving bit by small bit to his liver doctor's great joy after liver and kidney failure [the doctor team said most people in his condition did not walk out of the hospital] in Nov 2015.

He sees the doctor every 6 months for check ups and is still on diuretics and lactulose, and his doctor has said he can probably live at least another 20 years [we are in our late 60's] so it sounds like you are doing very well.

If you are concerned that it is taking too long you should talk to your doctor about your progress and how he thinks you are doing - then take what he says to heart.

Best wishes,

Mary

[Johnhstn]

Hi Mary,

Thank you for your words and glad your husband is doing well. I know you are in the cold north and I too am in the states but in Texas. I really fel am I am a walking miracle and have a great hepatologist and help from above. As I said my cirrhosis and p hypertension won't leave me but I really feel pretty good. My lifestyle has changed significantly and I just try to follow the Drs orders and take care of myself. I would hope to live that long as well and hopefully without a transplant. I too am in 60's (67). I have learns a lot from this forum and read it daily. Thanks for the words.

John