Being diagnosed with cirrhosis!

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Permalink Reply by peter trainor on October 18, 2009 at 4:15am

I guess you have cirrhosis not caused by alchol. maybe hep c, or had a genetic pre disposition to it.
It depends what stage your doctor says you are at. For example if you have cirrhosis caused by fibrosis and its scattered and not too severe this is known as "early" cirrosis or "compensated " cirrhosis, this means that you have no symptoms. It is possible to remain symptom free for the rest of your natural life and still , of course, have cirrhosis as long as you stop doing the damage to your liver. If it is drinking. Stop. If it is through "innocent" processes then do what you can to mitigate the damage.
I've early cirrhosis caused by drinikng after my divorce. I drank for five years, about a bottle of wine a night and sometimes half a bottle of spirtits. My doctor says I have "early" cirrhosis and that I have permanent damage to my liver.
There is also a lot of research going on just now
- dr buck with stem cells I believe
- also sapporota universit japan and so on. Every so often there is more encouraging news. To take an analogue for a moment. AIDS was once thought incurable, but is now manageable. Cardiomyopathy (heart failure) now has drugs to mitigate a

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Permalink Reply by peter trainor on October 18, 2009 at 4:20am

For some reason the site cut me off. Take your time and write down what the doctor actually told you. what was your alt reading (the most important liver enzyme reading) where did he say you were at the moment stage-wise with the disease. I had a brother who had cirrhosis for ten years in the decompensated stage - and he still drank!
so the key thing to do is take a breath, take stock, know that you are not going to die tonight or tomorrow and so live and enjoy your life and times.
Live with it , don't live every moment in fearful introspection. Where there is life, there is very very definately hope, nowadays with liver disease.

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Permalink Reply by Tina Johnson on October 18, 2009 at 9:32am

Thank you so much for that. I really needed to here that. I have another dr. appointment on the 29th,& I'll sit down with the liver specialist and go over all my test results. The way I found out about the cirrhosis is through my primary caregiver ordering a series of ct scans, mri's, and a neuclear medican liver test. And from those preliminary test results, she found heavy scarring to my liver. But I'll keep you posted as to what my exact numbers are after I go see the specialist.

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Permalink Reply by peter trainor on October 18, 2009 at 9:48am

thanks Tina. There are a number of indicatiors that they use, alt, ast, ggt, and other tests which can show quite a lot of what is happening with you. Then there is a biopsy that can be done, though some criticise the whole biopsy process as it shows the degree of scarring only in the bit of the liver where the needles goes in.
What to do is go prepared to liver specialist and use , what kipling called his six soldiers.
Who
What
Where
When
How, and that will keep you right. It might be an idea to take a friend to your specialist as your mind is likely to be coping with all the questions and counter questions you want to ask this person. So a friend beside can support your own memory. It's horrible, but you never said whether you drank a bit or not. The reason I ask this is because it is easier to remove the source of the scarring if it is caused by an identifiable causel agent. Say alcohol, or tylenol or some other drug. Anyways. The good news is that your appointment is quite soon. I don't know if you are an american or what. I live in glasgow scotland. And the support for alcohol dependancy and liver problems generally are not what they should be.
Any hoo. Don't go rushing off and buying milk thistle and all sorts of panaceas out in the web, see if your liver specialist can recommend you for drug trials, that are suitable for you. The time to start taking charge of your condition is now. Tonight, by refusng to let it be a fiend in the corner of your room that you have to feed your anxiety at regular intervals, for it has an inexhaustable appetite will never tire of you. And particularly starting the 29th. Get yourself ready. Where am I with this condition. Given such and such a response from me, what is the likely progression of my condition in your experience as a liver speicialist. Hopefully he or she won't hum and haw and refuse to be drawn. What you are looking for is the truth and the worthwhileness of all the options open to you.
okay
Night Night Tina
as they say in glasgow
Orrabest.

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Permalink Reply by Tina Johnson on October 18, 2009 at 2:53pm

Oh Peter, you are so funny! Thank you for this encouragement. To answer your question asking is it alcohol, or aspirin, I can tell you honestly it is alcohol! I am in the US and I would not necessarily drink everyday, but I did on the weekends. For the past 11 years we(my friends and I) would go out and really pour it on. And my drink of choice is beer! I absolutely love beer. I was horrified when I found out I couldn't drink anymore. I just felt like I'm not gonna be able to have anymore fun. LOL! As for your suggestion of me taking a friend, I think you're right. And I'll be sure to ask the who's, what's, the when's like you said. Thanks, hope to here from you soon.Take care.

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Permalink Reply by peter trainor on October 19, 2009 at 4:25am

hi tina
It sounds like you are not experiencing the symptoms yet. Though something made you go to your Care Practicioner ( I take it that's a doctor) If you are not experiencing symptoms caused by your liver, even though you have cirrhosis, the prognosis is a lot better. I just know this because I've read quite a few sites and the consensus is that if you are not experiencing symptoms then the scarring on your liver is like a scar on your hand. It will always be there but will not necessarily get worse. The trick is not to drink again - ever. I've done that for 18 months but xmas was a nightmare, the first xmas that is. And sometimes too your mood can ambush you. "I feel good, I've had a stimulating day, I need to sit and mull over it and relax. "Then you have a bad day." I feel bad, I've had a shit day. I need to sit and calm down, mull over it and relax "- with a beer of course. I am still amazed at the intricate ways I can convince it is okay to take a drink. This is now a no no. Let fear be the key.
Now I can't imagine drinking at all, but I don't kid myself that there is not a wee ambush awaiting for me from my self-deluding side of my nature. Got to just recognise it when it tempts me for the imposter that it is. Drink is not our friend, Tina. It is not even our enemy. It simply doesnt care about us.
I even went to the AA to try and give up for I sneakily knew I was pushing it, but I couldn't relate to the stories about violence and losing jobs and so on. I work as a business development exec in a college of further ed in glasgow and never took a day off work from drink, or hangover in all that time. What I did was become very good at arithmetic. I'd calculate around five at night, that if I started drinking now and consumed 12 units by say 10.00 at night that meant I should be free of alcohol by 5 in the morning, that would keep me legal to drive, and make sure that I was not too groggy for my work. The hellish thing is it worked. Worked until my body remembered what I had been casually doing to it over the previous decade and gave up baling me out by healing me. I am not in the huff with my body. It is me that let it down. By way of apology I promise it not to put it though any more and hope that it will forgive me by keeping the symptoms away. Sounds like bargaining. It definately is. So my story is no disimilar to yours Tina. I was not some derelict. I am a sentient compassionate witty person but with all that going for me I had to go and arse it up. But the good news is, repentence aside, we can acknowledge our hedonistic side but displace it into other things like eating better, spending time, by that I mean real engaged attention ,on those faces that orbit our life, that we maybe took a bit for granted. I am enjoying my life so much more that when I was drinking. Again, like you, not drinking a mega lot, in our humble opinion, but more, sadly than was good for us.
So, In a way, I've got to the stage where I feel its quite good to be shot of all those nights of my life that I wasn't truly living it, and sore heads of course. What we call in Glasgow a "sorry heid".
do take someone with you whose opinion you respect to your specialist, particularly if they have a good memory and are of sufficient stuff to not let you put your own spin on what the doctor has just told you. You need someone to reflect the truth from the doc onto you. Then you will be more careful and have lots of adventures in you yet.
adious for now
pete

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Permalink Reply by Tina Johnson on October 19, 2009 at 5:59am

Hi Peter. At first, the feelings and symptoms I was having, I didn't equate it be apart of the cirrhosis. But after I quit drinking, and went to the doctor I began to feel better and I mean almost instantly! The chronic weight loss, the loss of appetite, the horrible stomach aches i was experiencing were gone for the most part. No more was I waking up with red eyes having to use visine to clear them up because god knows I couldn't let people at work see me with them. I have much more energy than I've had in a long time also. Enough energy to start back going to the gym! I say all that to say when I weigh my pros and cons about drinking again, the good out weighs the bad. Now. Like i said in the beginning i was horrified to find out that i'd never be able to drink again, but what i've found out that works for me is to not to think about it in long terms, i have to think about it day by day and continue to remind myself how good i feel. The knowledge of finally knowing what was the cause of all my symptoms. I thought i had irritable bowl syndrome, or I had a low blood count and that was the reason i was so tired all the time.I truly had no idea that i was drinking way too much and i needed to stop completely. I don't want to be delusional or naive so i never say never, i just try to take it one step at a time and i know i'll be okay. Again, i'm just happy to know the root of it all finally. Tina!

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Permalink Reply by peter trainor on October 19, 2009 at 11:49am

hi Tina, you've actually stumbled on what the AA advises - to take one day at a time. I don't know your age, but if you count up the next few decades that comes to a hell of a lot of days. You can't fight em' all at the one time. So accepting each day as it comes as a day you are not going to drink for sure, is the benchmark position most people who are succesful in not drinking adopt.
I'm a maverick on this I suppose. It's esier for the romantic in me to say "Never again" fot it appeals to some perverse sense of cause in me deep down. I get inspired by the idea of pledging fidelity to a certain line in the sand I won't cross. But hey - whatever works.
I'm 55 and I would like at least my three score and ten but I don't intend to spend the next fifteen years putting up with life rather than living it. I want to put the whole struggle with the temptation to indulge myself with booze as behind me. If it don't work and I stumble, then I'll have to revisit my strategy on the matter but when it comes down to it - we really don't have a choice do we. Find what works for us as individuals I mean. You've already done a wonderful thing already. You have not went into denial, and carrried on regardles..
Ok. Please don't feel you have to respond to my messages out of politiness or anything. Wait a few days until you see your doc and then do let me know how you got on. But if you want to get "something of your chest" I would like you to feel you can talk to someone in the same boat so to speak so send me a message as often as you want, even if it is a few in the one day and I will respons.. Hope you understand what I'm trying to say. Night Tina.

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Permalink Reply by Tina Johnson on October 19, 2009 at 11:59am

Hi Peter. actually i was responding because finally i was getting some words that are giving me hope. You'll have to excuse me, sometimes i get over excited about things and tend to overdo it. Again, i was just happy to here those encouraging words. But i completely understand where you're coming from. So you're right, i';ll sit back and take it all in for a while. You have a good day, it's 3:58pm here! Oh, by the way, i'm 39.

Permalink Reply by peter trainor on October 25, 2009 at 8:46am

HI Tina, it's Sunday afternoon in Scotland and the clocks are now going back an hour to embrace the winter. Glasgow winters used to be harsh and the cold wind insisting itself from over the Irish Sea felt keenly but over the last wee while winters have been worryingly bland due to the invisible hands of environmental change.
I've been up a hill today with my boss of some 15 years, whose also a good mate and now that it is pushing 5.00 o'clock the gloaming is starting to dumb down the light outside my window. It can make me feel hemmed in, and I get the urge to go out. That is a no-no and another bargain I made with myself, no talking myself into going out. For the bars are just round the corner.
I know the 29th is coming round the corner at a fair rate of knots and hope that your spirts are good and I'm sure you will be cool calm and collected for your meet with the specialist. Remember your six soldiers - Who ,what, where, when , why , how
I don't have any more to say on the subject of cirrhosis but wanted you to know that you have crossed my mind over the last week or so and that you have support out there in the cyber-ether as well as your good friends in your life.
Remember to drop me a line and let me know how you got on.
pete

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Permalink Reply by Tina Johnson on October 26, 2009 at 9:36am

Hi Peter. Good to here from you. Well, all is well here so far, just waiting for my appointment. Not a whole lot to say right now. I'm on lunch break. So i'll update you Thursday or Friday, until then, have a good one and thanks for the kind words.

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Permalink Reply by peter trainor on November 1, 2009 at 5:49am

hi tina, pete here. I've just got back from babsitting my grandwean. How did things go. If your mind is in turmoil just now, and if you want to talk please take your time. I'm here if you want to say what's on your mind.
best wishes
pete

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