Good morning, hope you are all as well as you can be right now.
I have been a bit down in the dumps all weekend following a disasterous job interview on Friday. I normally manage to stay fairly positive but definitely got the blues at the moment and have been fretting a bit about my health.
I actually feel fine, eating well, no pain or dizziness and sleeping most nights. I try to do my 10000 steps most days but do have some low energy days which I am trying to address through a better eating plan. Bloods are slightlly abnormal but vastly improved since I became abstinent.
I know I must be in the decompensated category as I had 3 varices show up on endoscopy - no bleeding so not banded but started on Carvedilol. I suppose my question is am I permanently decompensated ? I actually feel compensated if that makes any sense but once varices are present, presumably they never go away and even with banding or medication they are still there albeit with lowered risk of bleeding ?
Sorry if it's a stupid question but having a bit of a wobble this weekend.
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jacobsmum24
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Hi jacobsmum, varices arn't necessarily a sign of decompensation.
In the stages of cirrhosis, varices appear at stage 2 (compensated), it's only when they bleed or occur at the same time as ascites that you would be considered decompensated.
My hubby presented with 7 burst varices in April 2012 and underwent two full years of intensive banding ending up having 42 varices banded in all. He is currently very stable and compensated, only barely visible varices evident on endoscopy and never any ascites.
Stages of cirrhosis are defined as:-
Stage 1 No Varices, No Ascites
Stage 2 Varices, No Ascites
Both classed as compensated.
Stage 3 Ascites +/- Varices
Stage 4 Bleeding +/- Ascites.
(These are the decompensated stages)
Hope that puts your mind a bit at ease, keep up the sobriety and the good work re. diet and exercise and you might even manage to decrease the level of damage to your liver. My hubby went from Stage 4 to now stage 1/2 so it is possible.
Don’t think of the recent job interview as disastrous. Actually it afforded you with very positive opportunity to learn, improve and move onto the next one with valuable knowledge. This will give you a much greater chance of feeling much more relaxed and better prepared for the next one.
Indeed. I went from 4 to 1-2, then 3 and worked back to 1-2. 4 was 10 years ago. For the past 2.5 years I have been weight lifting, heavy weights too.
Hello there. Newer to this board too. I had the same question about decompensated vs compensated and many other things so I am glad that you asked and I found your post.
It's encouraging to learn that a decompensated liver can improve to a compensated status!
That you feel well enough to do so well with your exercise and diet plans is great news! And seek employment to boot!
Oh, the dreaded job interviews. Perhaps you did better than you think. If not, I hope they get easier for you.
We were never told if my husband's liver was compensated or decompensated but from what I had read, I thought it was de.
We were def advised Stage 4 cirrhosis, and a dr. I thought or now I am wondering if I just read it somewhere on line; everything is a bit of a blur it seems, included that he had ESLD.
It's just been one month since the diagnosis was relayed after the endoscopy although the CT scan a month earlier showed the scarring, the ascites, other things such as hernias, some lung abnormalties, etc...
My husband does have Ascites. Just drained for the second time.
He isn't able to take diuretics at this time.
He does have a large gastric varices (not esophogael). Non bleeder at this time.
He does have edema in his feet and ankles. Better than it was.
Obvious muscle wastage.
Severe itching.
Major bruising.
Fairly new leg pain.
No HE.
He is weak but improving quite a bit.
His appetite is much better as well.
He does have B1, B12 deficiencies (although his B12 went extremely high as per last set of blood work and those injections are on hold at this time). I did buy sublingual B12 tablets for next go around - approved by the dr. And dissolvable B1s instead of the injections that I must get him to take - not Dr. approved yet.
I'll have to better understand the staging, comp vs decomp., so many other things when we next see my husband's dr. It is my understanding that there will be "a team" assembled at that point next month.
I wish you continued healing and abstinence! Good Luck with the job hunt and interviews!
ESLD (End Stage Liver Disease) is just the description given to Cirrhosis - cirrhosis being the last stage of fibrosis or last stage of liver disease.
The symptoms your hubby has would definitely indicate stage 4 cirrhosis or the more serious end of cirrhosis - ascites and oedema are symptoms of decompensated cirrhosis.
Hopefully doctors can get your husband more stable and if transplant is a potential option start progressing that.
The Gastro Specialist started to mention a Liver Transplant after the Endoscopy when my husband said No and then he said, I agree - not exactly but close enough - not likely going to be a candidate for one idea. Perhaps because he was indulging or maybe because of heart issues and/or other things.
It is quite possible, too, that my husband doesn't remember saying No as he did not recall our being told Stage 4 or being given an approximate time frame. I guess the sedation had not yet worn off during the brief conversation after the endoscopy. He truly appeared shocked when his GP told him a few weeks later how serious a condition he was in.
I have SO many questions.
But here he sits with me seeming quite well! Thx again!
Sorry to hear about your husband but it sounds like he has great support from you.
I feel fairly lucky that although I do have some symptoms that come and go, none really prevent me from leading a "normal" life apart from if I have a really low energy day. I have no ascites (thought I had initially but turned out I am just fat lol).
When I was drinking, I did get bruising, nose bleeds, itching and leg cramps but thankfully that has all resolved. I have never had HE but do sometimes wonder if I would actually know if I had gone doo lally 🤣🤣🤣
Please keep us posted about your husbands progress and do hope he continues to get stronger x
That's wonderful that you are not drinking and that your symptoms, by and large, are at bay. And, that you do not have ascites! A little extra weight is preferable and irons out some wrinkles for some!
It certainly is helping that my husband is finally cooperating!! It only took 3 decades but here we are.
I so feel for partners trying to get their significant others/loved ones to want to get better and seek help. No easy feat! One can be left feeling pretty ineffective!
Thank you for your lovely poem it really puts things in perspective and is a great encourager. Would you mind if I copied it and sent it to my friend in hospital who is struggling with a long term health issue, to brighten her day as she has been there for a long time ?
Hi Jacobsmum I must admit I was rather worried about a recent scope that showed grade 1 varacies plus mild PHG ..but after reading up on it it's actually very common for people with cirrhosis to have varacies..sometimes they grow or remain the same or even disappear in time should everything improve..hopefully in time if the liver continues to improve the symptoms can and do disappear..it's encouraging to know that it doesn't necessarily mean things are getting worse!
as your cirrhosis was from alcohol and you are now abstinent, you are in abetter position to make some recovery than some because the cause has been taken away. I was decompensated but within 6 months of eating healthy and staying off the alcohol I became compensated.
I had level 3 varices, which I had no idea I had until one of them burst. After the first episode I was having bleeds every three months for a year. My health was on the decline yet my liver was doin it’s best to keep me alive, however I knew one more bleed could be it. I felt it.
My Hepatologist, recommended I go under the proceedure of getting TIPS, not only was the procedure successful, but it has allow my liver to compensate. Now I sleep normal, eat normal my ammonia has become normal and better yet, my Hepatologist did an endoscopy and states my varices are all gone.
My case was concederles worse case escenario of varices due to my case.
Have hope, you
Hi Jacobsmum24. Short note before computer shuts down! Why didn't it do that when I was drinking?! Just wanted to say that I hope that things are improving and to let you know that I believe that my husband may now be in compensated state!!! So, it does appear possible! Things are going well here with abstinence, vitamin supplements, proper diet, diuretics (re-introduced) at this end. Blood work results from yesterday are fantastic. Better than we could have hoped for. Wishing the same for you and all here. Take good care!
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