Im totally worried - I think my outcome will be straight onto the liver transplant list (if I am lucky). So not a good future to want a confirmation from a doctor on.
So - ive read tonnes - seriously - tonnes of websites and pages - I have read all about the devastation of Cirrhosis of the liver, the slow painful deaths, the ups and downs, MELD, ChildPugh scoring, the lot - and still I do not know where I am up to and what I need to do.
I have red palms and finger tips - basically all palm prominences are red/pinkish.
Im tired a lot (in the late afternoon but great of an evening - quite lively at 7pm+) - it takes me 2 hours to fully wake up in the morning.
I have a beer belly - but it seems "watery" now - but whilst I have had it about 2 years - i dont know if its always been "watery" sloshy.
I think ive got the odd spider nevi - pinhead sized or slightly larger - about 8 of them.
I feel slightly nauseous on and off every other day or 4.
I drank 70 to 80 units per week for 8 years - I stopped 3 months ago totally with no trouble at all. I lost my job and career in extremely bad circumstances and hit the booze big time and didnt stop - I suppose thats not an excuse really but its the way it happened and I just went along - I still havent got over that episode things were so totally unfair and unjust - but hey.
Will I need a transplant even though Ive stopped drinking?
Can I help myself without seeing my GP whos a friend of the family?
What are my chances of living a year? 5 years? 10 years? if I never drink again? or am I basically doomed?
I think you really need to see a doctor- can you register as a temporary patient with another one or just face the Dr you know- if they are a friend of the family they probably know that you used to drink a lot. I don't think you should convince yourself that you have cirrhosis if you haven't had any blood tests or a diagnosis. I don't know about the red palms etc but you really must see the Dr and see if there is a problem- there might not be and then all your worrying will have been for nothing, be brave and face it head on
Well im still alive but feel pretty rotten most days - feeling nauseous more this week and last week. Palms still red aswell. When I lean on them they go shiny aswell where the redness is - almost wet looking and smooth.
6 months of no booze coming up on the 15th this month - but I had hoped to feel a bit better by now.
No docs - I dont need one yet - lets face it theres nothing they can do other than put me on a transplant list. And I think in all honesty my meld wouldnt be high enough.
People ask me why I dont go and see the doctor. Theres lots of reasons - but when people say I should go to see a doctor because there may be nothing to worry about and it may just be something else - then I know its nothing else. Its cirrhosis.
You see I know enough about medical topics to diagnose this - whilst I cannot get to the bottom of my blood results and what they would be - I dont need to. Its like this - If I allow a car to run over my leg - and it breaks - I dont need a doctor - I have enough knowledge to know that what I have done - and what I can feel - and what I can see all adds up to a broken leg.
It is the same with cirrhosis in many respects - what I have done (drink 50,000 units of alcohol in ten years) - what I can feel (nauseous, tired all the time) - what I can see (palmar erythema, spiders, yellowish eyes) adds up to cirrhosis - blood work would simply be added to the list of things I can see.
I cant believe im here - what a mess.
Whats good for the diet then? I like salt and I eat it because I dont have ascites yet. Whats so bad about red meat though - beef in particular?
Should I go on a veggie diet maybe?
I am just trying to delay the onset of decompensation once that happens Ill go to the doctors and see if I can get a transplant.
red meat and the higher protein in it that will eventually break down to actual ammonia is THAT problem. ammonia attaches very readily to brain cells and can cause its own level of damage too to the brain so higher protien should be avoided with any type of liver disease. this matters MUCH more if you are actually in what is called portal hypertension? this is where your portal vein closes off completely from scarring and the blood that would normally flow thru it, which IS when, in a normal situation/liver, ammonia would be filtered out of the blood becomes a bigger issue. since it can no longer even BE filtered since it closes off at that point, it does build up in the blood and also will go right to the brain itself as well. but there ARE ways to actually lower overall ammonia too but they DO require you see a doc and get onto the appropriate meds.
honestly tho, i DO think you are wayyyy ahead of yourself here as far as actually already Dxing chirrhosis way before even SEEING a doc for some bloodwork and a very important ultrasound? expecting to simply get popped onto a transplant list and get that new liver when it 'comes to that" is very very unrealistic,and the whole time really doing nothing to even hold that stage off, like even seeing an actual doc for full function tests to even find out where you are at here, and possible treatment otions to HELP you? what my son went thru(as a mere kid) to try like hell to avoid that Tx at all costs, i also think you are expectating way too much and also are being rather selfish considering? without the ongoing monitoring of a doc who is looking at your numbers and doing things to also decrease your overall risks of having liver failure now vs MANY possible years down the road just considering all of the very good possible interverntions they do on patients these days is a bit gloom and doom.
when my then 12 year old son needed a transplant when it was found that he had been born with tiny fibers simply growing in his liver and creating a TON of scarring that actually played out almost identiacally to chirrhosis only becasue they both scar the liver. he had absolutely no jaundice despite being down to only having about 20% of his liver function left at Dx and also IN full portal hypertension too. so we really had to watch that protien.
i just am a bit shocked that you have already Dxed yourself on the internet based upon symptoms that you have no real clue as to what is really creating them(they just can have MANY different causes than automatic chirrhosis, trust me. the upper GI functions as a whole determines soo much with symptoms since everything is simply attached to each other via bile ducts running within the liver) and have NOT yet even SEEN an actual even primary doc for the basic bloodwork needed and a good look at your liver with one of the best ways to even see the liver and what is actually still flowing thru it as blood supply with one simple ultrasound using doppler. you are merely 'guessing' an outcome here that has not even BEEN determined by what IS simply needed to actually even do that. you simply CANNOT obtain the true real level of possible liver impairment and ways to help "fix" certain problems by reading stuff on the internet, its simply not possible since you have no real clue yet as to how much real damage has been done or any possible treatment options, but just want to do nothing and expect a very scarce liver needed by MANY, when its 'your time'??
i can tell you right now, by keeping the additude you are right now will NOT help at all when that time comes, vs someone who has gone thru and done every possible option to actually just 'try' and make things last longer, regain some potential function by actually kicking some *** here by 'doing' something to actually help themselves will. that transplant committee when making that who should get what organ decision, takes into account EVERYTHING about that patient,trust me.
i TOO have both a liver and kidney disease and will need both transplanted one day, kidneys much sooner more than likely. and i am busting my butt trying to stave off the eventual outcome, getting my labs and USs every year and simply 'trying' to save myself and time here before my tx will be needed. and you doing nothing, giving up when you truely have no clue what is even realitically "going on' and 'expecting' a brand new organ when you eventually start to really lose total function mostly becasue you did nothing REALLY makes ME and the other people in my shoes kinda ****** off, ya know?
believe me, i am not trying to sound like or be a witch here RP, but dang hon, sitting by and "allowing' any disease process to overtake what still 'could be' a somewhat healthy organ and having the expectations you do too, its just soo not right. make that doc appt to actually even find out what you have and where and how bad, THEN follow whatever Rxed treatment plans your docs tell you you simply NEED to keep 'normal' as long as possible. you simply cannot give up or give into ANY disease process like you are and expect others to give up an amazing gift FOR you when there is such a huge lack or supply vs demand out there. if my son had not gone up in status when he did from only regional to national and also listed in 'grave' condition, he would have died waiting. it was a sheer total miracle that he was granted that organ only hours after being placed nationally since his liver came from three states away from ours and not at all within "our' region per the UNOS standards dictate when you are "only" under status 1A(that 1A just IS the very highest status on that list and only given when they feel if any given patient who needs tx, if they do not obtain that needed organ within the next 72 hours, will more than likely die). we had even discussed what we(me and hubby) would do with my sons organs 'if' his miracle was not going to happen. thats now bad things were. but that 'child' fought like hell against a disease process that no matter what HE or the docs did, was going to KEEP progressing til failure. that is the only real difference between chirrhosis and what he had as "congenital hepatic fibrosis" which has no cure. my disease within my kidneys and liver does not have any cure and is unstoppable too with eventual failure/hopefully tx being MY only future as well from polycystic kidney/liver disease.
stopping that 'toxin' of alcohol will help someone with alcohol induced chirhosis, thats a choice he did not have(stopping progression of disease from whats attacking the liver?) but you already DID that, and for that i DO totally sincerely commend you on since it shows(will show) any given transplant commitee that you DID at least stop THAT part. and that will also matter when even getting placed on the tx list too. you simply HAVE to maintain FULL and total sobriety to even be on that list and maintain it thru out the process,and most certainly after. it used to be the patient had to be totally sober for at least ONE YEAR before they could even be allowed onto that list? i do believe that has recently been changed tho to six months? but they CAN most certainly tell if someone has been drinking by doing one simple blood lab called a GGT? this WILL pick up ANY alcohol consumption since it is just one of the most highly sensitive tests for detecting alcohol consumption. so thay DO and can tell someones commitment to their own sobriety too.
but you have already seemed to have given yourself this sort of 'death sentence" with the "option" and full expectation of transplant without EVEN KNOWING exactly where your function numbers are even at yet, or what, in your upper GI is even actually affected that could also explain symptoms you have as well? or what your liver even looks like? you just seriously NEED to get that liver and your overall condition FINALLY evaluated before even goin down that road you have placed yourself on here already. any given transplant is never an 'automatic' thing simply because someone is litterally dying. its much much more involved and way bigger than that when organs are simply so very scarce to even begin with. but trying like hell right now to first find out where you are actually at, then doing everything possible to fight to keep what you still have, well that does take guts much more than you can even imagine. but its also something to be proud of too. you DO have some chances here my son did not,nor do i. you also have to find out what you are really dealing with tho before anything else, and where your actual functions just are at too. you just do owe this to not only yourself, but to the people who love and care about you and the many many others who are waiting already on that sick 'list' of what is usually around like 90,000 to at this point probably well over that number now(i have not checked the UNOS liust numbers lately)? there were that 90,000 people also waiting for various organs with kidneys and livers being the most needed when my son just happened to obtain his 'total miracle" back in 2000. that just IS the reality of the "list" you are dealing with and i will be dealing with too.
transplants DO NOT come easy let me tell ya. so it is up to the patient themselves to really TRY anything and everything to keep as healthy of a liver as possible to avoid that need for tx that seriously can be placed much further down the road than you appear to even think or know here, ya know what i mean? organs are just so scarce that many many patients, even children die while simply waiting and in some pretty awful conditions, for that 'magic gift" of the needed liver ever actually occurs for them and its also one HUGE 'if' as well.
the reality here is your choices and decisions will very much impact and affect many many other people at some point down the road whe placement on that list may become an absolute. so you just do HAVE to buck up, make that appt with your doc to really find out what in the heck is even going on with your liver and other organs that CAN also create at least 'some'the symptoms you are having too depending upon how they are being involved as well? certain procedures can totally change YOUR overall picture here too if you simply seek out help from your doc and find out needed info. if you seriously have not yet started to litterally vomit up blood from portal hypertension then you ARE in a much better place than you may think. this WAS my sons 'presentation" of his disease we did not even know he had, the blood vomiting because his portal vein was completely closed off and causeing portal hypertension. but he was able to have a procedure done that got rid of that hypertention part so there just ARE certain things that really CAN be done for you once your docs simply know what IS going on with you. but YOU have to take that very first step here RP and get yourself evaluated and blood labs at least done first. thats just the crucial part right now in truely seeing how impacted things actually are in you. once that gets done, whatever your numbers and an US say, that will dictate treatment. but you just cannot give in and give up right now. you also owe fighting this disease appropriately to those children you have there who need you to be here. that IS my biggest motivation for me and my insane situation, even with my depression i just have from dealing with spinal cord injury crap on top of my liver and kidney crap too, i want to see and get to actually know my eventual grandchildren now that my kids are over 20 and living their lives. my kids have ALWAYS been my biggest motivation as i have gone thru some really crazy off the wall crap over the past ten years here.
i am just wondering exactly where your 'nevis' is actually located(the face, or some other place?) and if you could describe that exactly as to what it looks like(the whole area), that would really help me to help you.
just PLEASE, DO get to your doc for that very badly needed eval and testing. you simply HAVE things, people, children you NEED to do this for if not for yourself right now. i DO wish you luck that this is simply not as bad as you seem to think. just get things moving here RP. only YOU even CAN get this moving yourself. trust me, i DO know how you feel here. and i am here for you if you need me, just do what you now KNOW is the best and the right things now and not wait any longer, K? Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
I would like to say that I am NOT expecting a transplant - I know how hard it is to get on the list - I am NOT an "expectant" or demanding type of person. Im just not like that at all. This is why I said "I will see if I can get on the transplant list".
In reality I really dont think I will be allowed on it because of my drinking history.
They will take one look at me and use the excuse that I will start drinking again to stop me getting on it. They are right to do this - not because I will drink again - I wont - ever. They are right to stop me getting on the list because there are people out there who did nothing wrong to themselves and ended up needing a transplant - whereas I did this to myself. I dont deserve a transplant - others do.
So please do not assume I am expecting and demanding anything - I am not like that as a person. Maybe I should be pushier - I dont know.
It isnt that I am doing nothing - I havent had a drink now for 6 months (on the 15th) - whilst it is easy for me luckily to give up booze - it was still a big life change but I did it. I was already cutting back before I found out I had palmar erythema.
I havent a cat in hells chance of a transplant - and the only thing I can do is try and help myself because doctors wont help me - why should they? I basically did this to myself and I am the only one to blame. Although I do blame my dismissal from work 8 years ago which tipped me over the edge. It is still my fault.
I hear about people doing vitamins, good diet and all - I just want to learn more about it so I can try before I go to a docs.
The Nevi - I have some on my chest - close to my neck but below it - they are around a pinhead in size. They are part of my skin they are not raised at all. there is a tiny red central area (around 1mm circle) and there are then two or three "legs" on each one. Each leg is around 1mm in length to 2mm in length.
There is one on my bottom lip - it is on its own - it is on the skin right up against my actual red part of the lip. It is the same in size as the others.
I would say the skin around the whole are of my very very upper chest seems normal - as does the skin no my lip.
If I look through a magnifying glass at the "legs" they seem to follow the formation of the skin - like if there was one on my finger it would follow the fingerprint lines - as an example.
the mere fact that these are NOT actually 'raised op) and very very bright red, means there is much lower pressure underlying within that upper GI area so chances are that you still DO have some good flow thru that portal vein(and that one thing in and of itself IS crucial and very telling about progression of possible disease process thats underlying here). my son had this one and only one on his upper cheek,right below his L eye for years, that we had NO clue as to what this lil sucker was or even why it was there. even his actual ped doc did not appeear to ahve a clue either.
RP, you just really seriously ARE 'asssuming' soo many things that may or may not even be true or real to the extent you seem to think? and that DOES inclue your right as a potential liver patient who may need a tx one day too,to eventually be placed on the list for a new liver. the mere fact that you actually QUIT DRINKING tells ALOT about how much you want to be able to get this all found out and dealt with, as opposed to people who just are and have been almost lifelong and very chronic alcoholics who are in a totally 'different' catagory than you simply becasue they KNOW what alcohol has done to their livers and is STILL doing as the continue to drink away anymore liver function or that possiblity of ever actually being able to qualify to get on the list. in that respect alone RP, you ARE different since you simply stopped introducing that liver toxin once you started to even suspect a potential issue going on with your liver here, ya know what i mean?
but along with simply getting the liver functions tested, that one test i mentioned called the GGT will also help to establish on VERY important thing. that 'onset' of total sobriety. this just HAS TO be documented as asp so they will know you did the right thing right away,sut they will also have to go by what are the 'documented" numbers too that truley tells them no alcohol has been reintroduced into your system too. they cannot, for many reasons simply take anyones 'word' for it, so that establishment of your sobiety here witht hat test just really IS 'their' only real proof that you are and will remain sober,ya know what i mean here? sog getting the functions tested along with the GGT will be your 'starting point'. so the sooner THAT one thing even gets documented, means alot for you in the future. trust me here RP, you are NOT the first person who succumbed to alcoholism and needed a possible tx and you wont be the last. but it IS your overall commitment to helping yourself by establishing function levels and that sobriety NOW that matters most now and down that road should that absolute need to Tx should occur too.
it would not suprise me at all that your overall damage and fucntions are simply not as bad as you may think here. genrally, as i stated above, it usually DOES take alot more than 8 years of heavy drinking to truely 'bring out/on a solid level of chrrhosis in most people. you have NOT been doing this for like 20 or 30 years here RP, only 8? and THAT does matter as far as real underlying damage too. the liver CAN regenerate new and healthy liver cells as long as that TOXIN is stopped here too. so you DO have that going for you as well.
and like i mentioned before, without even having any of the hepatics and metabolics tested in you and seeing all the many different organs within that upper GI that CAN very easliy also show the very same "types' of symptoms in someone, you honestly just do NOT know right now exactly what IS creating what, ya know what i mean? for example? anything that blocks a bile duct like a gall stoneor 'sledge' from the gall bladder can and will create a much higher set of function loss numbers simply becasue the system as a whole is not working as it should. removing that stone from blocking will bring that level of normalcy back. you see what i mean? it not ALWAYS or ONLY "THE" liver itself that can create the types of symptoms you have. that is the bigger reason to just go see your doc and get this whole process of Dxing real impact or any real damage found oput and possible treatments and or procedures(depending upon just what IS impacted in there) started to help give YOU back to your family, and esp those children you have who you just really DO owe keeping you here as long as possible to too. you totally 'deserve' getting help and treatment just like anyone else does RP. the fact you quit any drinking,like i said, places YOU in a totally different place than the ones who find out they have sever liver diseasefr from just wayy too many years of alcohol consumption and STILL continue to drink themselves to death. they figure, why bother. this is where you kind of "are" here too, 'why bother its futile"? that is what i am feeling from you anyways. and its sooo not futile RP. to NOT even know what IS truely creating these symptoms you feel you are having,then Dxing youself with somethiong that ypou also do not truely even KNOW youhn have hon, to me just seems a bit crazy,ya know?
let me ask you this. when you say you have actual jaundice, yellowing of the whites of your eyes? is this a "slight' appearance that you think/assume is yellowing? do yourself one thing. take a mirror and actually go outside and into the daylight, then look at those eye whites to really really see for certain that they ARE indeed actually yellow. the one really huge thing i found out with my son and when his jaundice set in out of the blue one day, you cannot actually always even see the yellowing really well even in strong indoor lighting? i had spoken to my son right before we were leaving for a lab appt but in our kitchen that has some pretty bright lighting, and never ever actually saw his yellowing there while looking right directly AT his eyes, but ONLY in the house. it was not til we were actually outside and walking to the car that i had asked him a question and when he turned his head to answer, BOOM, it was right there the whole dang time, even just the few minutes before while actually looking AT his eyes. kinda shocked me that it took actual outside daylight to even see this when it popped in about two months after his initial Dx was done. but DO try that and REALLY SEE what those eyes look like. jaundice just IS very MUCH a definite "yellow' and not anything you would have to look at and 'try" and determine when actually present. its just THAT 'there". if you do not see that very yellow whites of your eyes when outside, then you may not even HAVE true jaundice at all. it IS simply THAT really distinctive.
all i am really trying to tell you here and for MANY real important reasons, is just get yourself to your doc and get any possible function loss actually found out. and establish your own sobriety there too. you just wont klnow what IS impacting what til the testing gets done. there just ARE certain levels of progression that you DO still have the ability to fully stop or slow doen right now that will not even be options further down the road,depending upon just how much your actual liver is even being impacted here too? you owe this to yourself but mostly your family and those kids RP,you just DO have that level of obligation to them to BE there for them now and in the future too.
can i ask just why you want to seek out another doc other than the one who knows you and your medical history the best? i have just been wondering about that one since you mentioned this earlier? just please DO what you know simply NEEDS to be done. things simply may NOT be as bad as you think esp when looking up the horror crap on the internet that are soo much more involved with key things not always mentioned either? likje, what 'could have been" done BEFORE someone got to a particular stage kinda stuff? just see your doc RP. i AM here to help you, but you do need to find out alot of things right now and establish your baseline sobriety with documentation too, and that really IS critical asap. good luck RP, just do the 'right things" here,K? take care, marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Its just about 1 year now since I stopped the booze totally - I havent had one mouthful of beer - absolutely none.
My hands are still red - maybe even slightly deeper red now.
I dont feel sick anymore
My stomach is swelling some - I have put about 12lbs on since xmas 2010 - a lot for me.
My spiders are exactly the same visually - not worse - not better.
I am not as tired now as I was - nowhere near - not brilliant - but almost normal.
A new symptom is I have lots of spots on my upper arms - hundred and hundreds of tiny spots - some raised some flat.
My bed smells of sweet fruityness!! after I sweat.
Sometimes - sometimes not.
What does all this mean now?
Any comments are appreciated.
Last edited by Administrator; 12-09-2011 at 12:52 PM.
The spots started around 7 months ago to the best of my memory.
They started on my outer biceps and have slowly wrapped around the back of my arm to around the middle of the back of my upper arm - they thin out there.
They occassionally (6 or 7 spots) seem to make it to my upper forearms.
It is white if I use my nail to scrape at the skin until the surface breaks - bear in mind they are 2mm.
They dont itch at all - unless one gets too large maybe then I get a slight allergic reaction around it - as though like a nettle sting bump if that makes sense.
Both arms are equal in distribution and quantity of spots.
My BMs are up the shoot - sometimes runny - not finishing feeling but cant go anymore. Rarely a "healthy" stool. Gas - not really more than ever before.
My diet is appalling.
Chops and onion rings and chips - no veg. 1 massive meal a day at 9 in the evening due to work and kids. I snack on rubbish here and there.
This could be why my BMs are poor.
Could this be why I have put weight on since xmas? Is that possible for someone to do? My weight is 12st naturally (or was)
Last edited by Administrator; 12-09-2011 at 12:54 PM.
If I look at the whites of my eyes, I can see no yellow - except when I turn my eyes inwards and look at the "ear" side of my eyes - there it looks very slightly yellow. I have compared this to my wife - hers are not as yellow there - but are not brilliant white.
I would say that there is no visible change in my eyes over the last year since I started looking into this.
There is no visible yellow in any skin on me at all.
Last edited by Administrator; 12-09-2011 at 01:01 PM.
When I have just eaten - my abdomen is more taught than when I have not eaten.
In the morning, my abdomen protrudes less when lying down - and if I tap it on top it does seem wobbly. Wheras after eating a lot - it is taught and seems bloated - thus it doesnt wobble.
I have tried to examine myself for shifting dullness - but I am inconclusive on that because I do not understand ***exactly*** the sound I am listening for.
I tried taking dandelion - because I am too worried about the truth - to see if I could cause diuresis? but could not. I took a lot until I got to the point where I was 4x the max dose on the bottle. Nothing happened.
If it had - and I had lost weight and girth rapidly - then I would have been forced through knowledge to go to the doctors and get the ball to my death rolling.
Its dreadful living like this - but I do honestly think that if I went and got a prognosis < 3 yrs it would kill me.
I guess I am trying to string myself along.. Im confused at the end of the day.
I would - with my own limited knowledge - say I am borderline decompensated - or rather - if I have ascites, just now decompensated.
Around 1 year before I stopped drinking - the skin on my forehead between my eyebrows started to become flakey and red. I used hydrocortizone cream and that would clear it up - but it always came back a week or two later.
This went on for about 20 months - but 4 months ago - it cleared up and has not come back.
I also suffered terrible dry scalp aswell with dandruff falling off and visible flaking round my hairline. This has also eased somewhat over the last 4 months.
I also have a dry mouth quite a lot. Especially at night in bed.
My night vision - I have not noticed anything problematic in that area.
I have never exfoliated properly - this is something I will look into - although Im wary of curing the spots but not the cause if its liver related.
Our NHS system here will likely treat me like an insect as this was done of my own accord. (Although I debate in my favour as I thought this only happened to 75 year olds in the gutter with a bottle in a brown paper bag) and it never once entered my head that a 40 year old could die of drinking problems.
I found out a guy died mid 40s who was a friend of the family. My hair stood on end on my back. Because I knew then that I was in danger. My first reaction when I heard he had died of "drinking" (I knew no detail) was that he had committed suicide - died of alcohol poisoning (acute rather than chronic which of course I knew nothing of at the time either.
So looking into it - I noticed things like lists of symptoms - Palmar Erythema being a noticable one. I looked at my hands and almost died on the spot - there it was.
The previous day was my last boozed up evening/night.
Since then - I have learned what I know - not scientific by a long shot - but the basics.
As you say - my symptoms appear to be textbook along with the cause itself.
Having been on here with you tonight - I have some serious thinking to do about the future. In essence - you have diagnosed me - being as you are medically educated. You have in fact pretty much given me a prognosis - as I know enough to read stats from the right websites online. These would be inline with MELD scores and Child-Pugh scores - given symptoms at various levels. Whilst I dont know my LFT's or Prothrombin time and a few others - I think its really safe to say that I am on the scale - and the cirrhosis will likely progress.
I have often wondered whether they are more geared towards viral Hep though - with the liver still under attack - rather than a liver no longer under insult.
Youve explained for the first time how cirrhosis can progress of its own accord. I think its pretty much at that stage when ascites is present from what I read - and also - before ascites is present.
You are a good bloke for listening to me - non-judgemental (at least not revealing)
For that - I thank you deeply.
It is almost 4am now here - day/night reversal is another symptom Im told - and here we are!
What is needed now is action on my part. Whether I am ready to face up to this yet is unclear - but a step towards my doctor is looking more imminent by the day.
I do sympathise with the US patients. I have read a lot of horror stories. I am under the impression (maybe wrongly) that Obama is sorting that out?
For now - I must go and lie down and think hard.
I will try and get some pics of my symptoms for you - a case study
Although with the way society is - and your field of training - I suspect I will be one of a many many people you see in this mess over the coming years.
RP? the one thing that i just DO highly doubt in your particular situation AND the mere fact that you DID indeed quit drinking, is that you would be treated anything less than the human being you are. you simply DO need help here that ONLY an educated GI or hepatologist can give you right now. i am glad, soo glad that it appears to have decided its time to simply see the doc and get some testing done? and a huge congrats on your sobriety year, that IS a huge huge deal and more than likly IS the main reason that things have not progressed to the point they easily could be at this point too, so give yourself a huge pat on the back for that.
luckily, you have gotten some really great advice from DD here thru this. i am not too certain as why i have only gotten one mail sent to my inbox with this many responses tho. but i am here only becasue i DO truely care about you, your condition and what this does and can do to a persons family. you HAVE made some really good solid choices for yourself RP, but getting that ball rolling with simple baseline testing is critical for alot of reasons. everyones disease processes do NOT always play out in the very same ways since there just are so many different variables involved. so some things that you feel may be really bad, may not be as bad as you might think, and some things you will just find out as you go.
simply obtaining that very basic labwork done on you along with a needed UA to check for any traces of actual ketones since you are now mentioning friuty breath? are needed. they can also check your portal vein flow velocity by actually doing one simple doppler ultrasound. trust me, that doppler, which is just a small kind of flat wand that is simply run over the over the outter abdominal, sides and partial back(by the tech) at various angles really SHOWS all vascular flow including not just P vein flow velocity based upon among other things, color changes with that doppler system(its kinda like watching the weather channel), but also the overall texture of your liver/scarring, and how your actual blie duct flow is, size of your liver too among other needed info. it would also allow checking of all other organs in your upper GI too just to see if anything else is also involved, or more responsible for particular symptoms not directly related to the actual liver. i get one of these every single year to help monitor my own liver and kidney diseae. alot of info in one very simple non invasive test.
once they have done the very basics that will at least allow them to know the basic function levels you still have and how much critical bloodflow is also still going thru the very needed P vein, then they will more than likely want to that liver biopsy. while it does sound kinda scarey, it truely is not that bad and allows much more detailed info on the more 'inner cells' and how impacted "they' just are too. how those cells simply 'look' under a microscope will give them a ton of good info on YOUR particular liver disease process. and they DO numb you up really well before they do this too and also if you need or want, they can use along with the lidocaine for numbing, a combo of what is usually fentanyl and versed to help ease any other pain and help relax you too. my son has had five at this point, with that inital one done when he was first admitted since they assumed before all testing was done that he was going to be an immediate 'placed on the list' candidate, he wasn't at that point since there just were certain things they could actually still do for him. despite him already having a completely closed of P vein(he was vomiting blood VERY heavily from that then) upon US and being done to only about 20% of his overall liver function ,and NO jandice yet either which just totally freaked me out. if you are NOT at all seing anything in your stolls that appear to look almost exactly like coffee grounds or are not vomiting up any blood and are feeling faiurly clear headed as well(tho high blood sugars can also kae a person feel 'off' too), chances are that your own P vien has NOT yuet closed itself off and is still clearing the ammonia that is done when any blood merely passes threu that P vein. that would be a huge indicator for P vien compromise. using lactulose now just to keep things moving would NOT actually be a bad idea either. you WILL be placed on this liquid med if that P vein DOES close off from scarring tho. its just very needed at that point to get that backed up ammonia thru the intestines where the longer it sits there, the more ammonia gests absorbed even thru the intestinal walls, and then of course attaches to the brain cells. but hopefully you are not there yet. but simply reducing, as dd mentioned, your overall protien intake ESP when it comes to red meats which DO contain and create a much higher level of protien/ammonia down the road would really be a good idea too.
what concerns me the most right now is your mentioning of the fruity breath? as DD mentioned, this can be impacting how well the pancreas is also working along with the livers job too when ANY liver disease is also present. you just DO need to have your blood sugars tested to see where they are too. if your BS is way too high, it also would place you at very high risk of going into a ketoacidosis or whats usually called a diabetic coma(this just IS the more common cause, hence the name)? at that point, you would really NOT even have the ability to say no, do not take me to the hospital. that choice gets taken out of YOUR hands anytime you become unresponsive and not able to tell what YOU want done. then you would also risk having a siezure and brain cell damage too. it all really depends upon how high the overall BS is at the time. overly high BSs/fruity breath are just not to be taken lightly either. they very much can do their own levels of real damage if not appropriatly treated within a certain timeframe. you just seriously DO NEED that blood sugar checked along with everything else, and the sooner the better RP. the bigger problem when you wait to even find out just where you are at with ANY level of liver disease is it does start to really impact the other GI organs too. so you just DO seriously need to make up your mind to go to your doc and get this all started hon. your kids DO deserve to have their father around for as long as they possibly can. and you are NOT any 'less' in anyones eyes becasue you succumbed to something that DOES affect billions of people when they are usually trying to 'cope' that results in alcoholism. you did something, you found out you have a liver problem and quit the toxin from even being reintroduced into your system. now you just need to make the appropriate choices to give yourself back to your family RP. what you did was admirable(and the absolute BEST possible thing you even could have done considering) and most certainly is nothing to be ashamed of. now if you simply did nothing and did NOT FIGHT back for at least your kids sake, that would be the bigger tradgedy in all this. you OWE them YOU.
i KNOW you have been in and out of denial over this and were hoping there was some possible way of changing things be doing anything that you could at home. but you realistically NEED the ongoing testing and expertise of the specialists right now to get your baseline estabilised, and that critical GGT that shows them you have not been doing any alcohol consumption either. this just realistically should have been done wayy before now so 'they" already were aware of your sobriety date. but doing this now would still take care of that part and document it. its just critical to have that sobriety established in this type of situation, the sooner the better.
just one other thing i needed to mention to you is reguarding what if any potential OTC type pain relievers to take? while that particular choice should really be up to your doc and him knowing where your particular labs are. taking a small amount of tylenol is not a seriously 'bad thing' like you may think compared to what can happen with ibuprofen or any other types of NSAIDS that also tend to thin out blood as well. when NAPQI actually even gets generated, its ONLY when a needed chemical that is in the liver called 'glutithione' gets too depleted. THEN you have a toxic situation, but ONLY if no glut is availiable? the thing is, that same exact chemical is what also metabolized ALL of the alcohol you consumed as well? this is the biggest reason there is finally a big warning about taking tylenol along with alcohol. once that glut is gone its gone til it has time to actually replenish itself with NO toxins being introduced for like 24 hours, but that is when the NAPQI gets created. it simply will not metabolize anymore alcolho which goes to the brain and can create alcohol poisoning and pretty severe liver damage all in and of itself. but with NSAIDS, and ONLY becasue you really have NO CLUE as of yet just how your blood is clotting, taking anything that may thin it even more, esp if you end up with a ruptured varice,can really create much worse overall bleeding than if you had not taken it? thats what i see as a potential issue here.
we were told when even my son being down at the 20% of liver function left, that in THAT type of situation, its simply 'safer' to use a smaller amount of tylenol and NO NSAID type pain relievers. but this DOES need to come from your doc ONLY really once he knows where your overall labs are at and more importanly what is still being generated in your liver as enzymes/chemicals along with of course clot time. there ARE also a few narcotic pain meds out there like roxicodone(it is basically like percocet without any tylenol? just 'plain' oxycodone) that also can be used that would NOT include any tylenol or any NSAID what so ever too. these types of narcotics are simply used more for chronic pain patients which i am unfortuently one of too, becasue we HAVE to take soo much of this crap on a daily basis. but these types of meds can also be very beneficial for you too if actually needed. there are also 'long acting' narcotics out there too that you only have to actually take like two or three times per day. but like i said, getting all of your labs done and levels/functions known right now, is really critical.
as much as certain things may 'sound' like specific conditions with symptoms, there realitically is no true way for anyone to fully dx anyone with anything over the net(just good educated guesses til certain things are known). there is just not enough real solid info availiable that your doc can obtain. and also seeing what the patient is acting like, looks like,and esp palpating that abdomen also IS part of the overall exam as well.
i just truely hope you can do this much sooner vs later, esp with the latest newer symptom. that just HAS to be checked out asap before something else happens that will take the doc decision right out of your hands RP. we just want you to have the best possible life here with what you are dealing with. and for your kids to NOT lose their father either. i lost mine just a few years ago and i am 50. it still absolutely killed me inside since it was soo sudden and unexpected too. just DO what you now KNOW are the main things needed for your best interest and health, K? good luck RP, and DO please keep us posted. we DO care about you or we would not be here or so concerned. just please keep THAT in mind too? marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Hi Marcia, Thankyou for your post - I will try and give you some info.
My breathing doesnt have the fruity smell it appears to be my sweat - in the night. Its the top of the quilt which has the odour - some days - some days not.
So things maybe not so bad ......yet?
The pills - for years I took ASPIRIN daily (an NSAID) - I took it for a neck injury - the pain comes and goes with it. I would take a lot - upto 1800mg per day. This would be mixed with alcohol - naturally I dont know if this has made things worse. Do you know if this makes it worse? I take NOTHING now - and havent for around 6 months. Not one single pill.
I will have to check whether we can do portal vein flow and pressure with non-invasive technology here - I havent heard of that before. It sounds impressive.
My GGT levels wont change now if I went to the doctor. Lets say I was still drinking and I got my GGT then next month it would be less if I stopped on the first test. So now if I go - it will be a fixed number from hereon in - SURELY this can prove I stopped to them. But I can see they wont know for sure how long. Well I know anyway - its a year on May 15th.
I know I should go.
I really want a way to kick myself in the rear side so that I can be forced into it. If I could get my weight to fall by 6 lbs in 10 days then that really would proove to me that I have ascites and that scares me to death.
I was saying to ddfreedom last night that I had put weight on since xmas. But I mentioned stone as my unit of measurement.
So to clarify - I would like to know if this sounds like ascites.
At christmas last year my weight dropped from 180lbs to 171lbs in a week - it is now 182Lbs
So an 11Lbs increase in four months.
Well - my abdomen is where it all seems to be - I look pregnant. But I have put on SOME subcutaneous fat aswell - I can tell.
To me that weight change could be anything - but - the sudden drop at xmas really bothers me A LOT.
Now that I have reached that 182lbs I am worried again. BUT I read things about people with ascites and my own weight gain is very very slow it would seem. So maybe its not ascites?
This is why I am so desperate to prove myself WRONG. I want to prove to myself that I have it - and I HAVE TO GO - NO QUESTIONS ASKED - GO.
How can I prove it? Is there a natural diuretic? Shall I get my hands on the potassium sparing pills online and give it a week.
If my abdomen shrank - I would shoot to my doctor right now - because then with the facts in hand - there is NO DENIAL.
I know im a joke. I dont want pity - I think I just want logical facts for myself to kick me into gear. It just the way Ive always been - like the dentist - forget the checkups and go when the pain is too bad. Must be a gene or something