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.