Cirrhosis of the Liver

[Liesel]

Just written along chat and lost it. Grrrrrrrrrrrrrrrrr

[cctexan]

Hate when that happens. Worse when I write it again an push the wrong one again

[Liesel in reply to cctexan]

I know, it makes me mad!

Liesel

[CRYSTAL11]

Why is it when you feel rotten everything goes wrong

It takes me twice as long to do anything as most well folks

[Liesel in reply to CRYSTAL11]

I know. I couldn't go out to take pictures of an abseil down the Forth Rail Bridge because my knees are sore and the soles of my feet feel really raw. Pity because it's a lovely day.

Abseil was for various charities.

[Purpletop]

Oh please tell us all about it anyway, how did you get to the diagnosis?

[Liesel in reply to Purpletop]

I was drinking too much and my Dr. kept saying I must not carry on. I did of course because I thought 'it'll not happen to me'. The rest is history, I got very sick and got taken to hospital. I was frightened and don't remember anything about it. I didn't know where I lived, my name etc. I think that was about 2001 or 2. can't remember. Haven't had a drink for 2 years. If I had they told me I'd be dead in 6 months. Wow, I was gobsmacked. So on it goes with the side effects etc.

Are you a Liverbod?

Liesel

[Purpletop in reply to Liesel]

For some reason my liver and gallbladder get inflamed with the lupus and I'm sensitive to alcohol, I can't have say 3 glasses of wine a day for 3 days without being in pain and feeling awful at the end of the period. And the liver enzymes being high. So now I don't drink at all, maybe a small glass of wine once in a blue moon. It helped me to think of it as poison.

My Dad died of liver cancer - i suspect he had untreated autoimmune hepatitis that triggered the cancer but he didn't go to the doctor until it was too late and he died 2 months after that. And the encephalitis was scary to see - the confusion, I mean.

Is your cirrhosis compensated? Are you taking medication for it?

[Liesel in reply to Purpletop]

Lots of meds and I am not allowed to drink at all. I don't miss it but I hate being among people who are pissed and start being silly. I've done it myself, but it's lonely and boring and I can't stand it. It's made a difference as to which friends I'm comfortable with.

Now the smoking battle is on. I knew it was going to be hard so I'm taking anything they'll give me.

Take care,

Liesel

[Liesel]

My doctor told me I had to cut down on drinking. I just didn't believe anything that serious to me. What a fool. The first time I went into hospital. I was sick everywhere and I hadn't a clue where I was and who I was. It was scary but it's my Boyfriend who remembers the whole episode. I think he was really frightened. Look up Cirrhosis of the Liver on the web. Just type in those words and you'll see there is lots about it.

Thanyou for asking, Purpletop x

[Fighting]

What you drink makes a difference too. Some people can't stop after one alcoholic drink then others of us can't stop with one chocolate. Chocolate has another whole set of issues. If you can stop after one, I believe one beer (12ozs) is what's OK and can even be considered good. I don't remember what health benefit it gives but there is one.

Sometimes it takes changing your social group to stop. Sometimes an alcohol program helps. Now that you are freaked out, it's time to get to work. Good luck Liesel.

[Liesel in reply to Fighting]

I had to give up drinking 2 years ago or would certainly be dead by now. The battle now is trying to stop smoking!

[Fighting in reply to Liesel]

Smoking is difficult, about as difficult as coffee. I have heard that analyzing the times you smoke and the situations is the first step. After that, you come up with an alternative behavior: e.g. doodle, play with rubber band or string. I'm sure there is a list of behaviors others have found useful someplace. Good luck to you. I don't want to be pessimistic but a very good friend's H worked in the trades. He "drank after work" and it became problematic. He never could give up smoking and died about 8 years ago, infections he couldn't fight due to cancer. Hugs!

[Liesel in reply to Fighting]

Thankyou, Fighting. Drink was easy to give up. 2 years now. They said I would die within 6 months so now I'm living and thanking all the Doctors.

Still struggling with smoking, but I have cut down. I see a girl called Carrie and I'm able to do one to one. I was in a group but it was really badly run. It was a free for all and that's no good in any type of Therapy. I've also been depressed since childhood, although I didn't know about it at the time. I went to various groups and they were really well run.

Liesel x

[CRYSTAL11 in reply to Fighting]

I gave up many years ago it is tough get some help it's easier if you have backup I used the patches and they helped don't think I would have done it without good luck

[Fighting]

For me it's the use of the hands that supports the healthy behavior. I can eat bags of chips, cookies, pork rinds, etc. if I'm sitting in front of TV. I won't snack if I'm reading, petting my cat, making a grocery list, sorting junk mail, knitting or mending. Like I mentioned before, one step at a time is necessary. The first one is to analyze the situations that you reach for the cigarette. Best wishes.

[Liesel in reply to Fighting]

To Sheilacrystals and Fighting. I'm doing a 1 to 1 therapy now, so I'll see how that goes. The patches are in question because of all the Meds I take. Anything new I take usually causes a side effect, any where on or in my body. I'll ask my doctor again.

Best wishes to both of you,

Liesel

[juneybells]

Hi. I feel for you it's horrible living with cirrhosis of the liver, I have it BUT I got it from a lupus flare that no-one knew I was having! Including me. Lupus inflamed my liver so much that it was dying, I have autoimmune hepatitis from a lupus flare, do you know what's the worst thing is I DON'T DRINK! Lupus is the Pitts. Sorry rant over

[Liesel in reply to juneybells]

TO Juneybells

Oh my god, that's awful. I didn't know Lupus could do that! How do you feel on a daily basis? I'm all over the place. Something appears and then goes then something else and something else...........it,s like a circus but I'm not enjoying it.

Stopping drink was easy, I don't know how but it was. I suppose the death threats from my Doctors made me realise this had to stop. But I avoid going out with friends because you start doing and saying stupid things. I don't want to be in amongst it. It just makes me angry and I feel very alone. Enough for now. I'd like to here more about your plight.

Liesel

[juneybells]

Not many people do realise that lupus can cause liver problems including me ironically. Autoimmune hepatitis was called lupiod your bodies immune system attacks good liver cells and the liver becomes inflamed in my case they think it may have been inflamed for a couple of years before anyone realised....... so lots of damage! Most if it irrepairable. I thought it was a normal?!?! lupus flare. I am stable at the moment so not too bad day to day had to give up work too much stress as I now can't risk a prolonged flare. Been told that as the AIG is lupus driven there is nothing that can be done other than immunosuppressive drug's and constant test to monitor the destruction of liver cells. Last time saw a liver specialists he said the next stage would be liver cancer but they don't know when that might happen could be six months or ten years no way of knowing. Luckily I'm quiet a positive person so try not to get too down. It's all in the lap of the gods! I have a good support system hubby and kids are brilliant.

How are you day to day? do you work?

[Liesel in reply to juneybells]

I just hate all the side effects. They come and go and then come back again and then a new one pops up. It's a constant roller coaster. My body wakes up in the morning and thinks, hmm what shall we do to her today? Tee hee hee. Walking and standing for more than 5 minutes are painful and I always need to be near a toilet. Laxatives, essential.

Do you ever feel lonely with your illness? I do and it's impossible to explain it people. I keep forgeting to ask my Doctors what my prognosis is. I'll probably get different answers from them. It's a bit like shopping and hoping for a bargain.

Look after yourself and do one nice thing a day, no matter how simple.

Where do you live? I'm in Edinburgh, Portobello by the sea. I take comfort from that.

Cheery bye for now, Liesel (Keep in touch)

[Diagnosed2012 in reply to juneybells]

Hi, my liver is affected too. Nothing serious so far, but my blood tests frequently come back with raised liver function test scores. I've had ultrasound, CT and MRI scans which didn't show a fatty liver or any damage. I don't, and haven't ever, drunk alcohol, which took a bit of convincing to the doctors who have dealt with me.

[juneybells in reply to Diagnosed2012]

The first thing the doctors asked me was how much do you drink and were also disbelieving when I said I don't so I know how you feel.can't stress how much you need to keep having those test. Keep well

[juneybells]

AIG. Should have said. AIH. Stands for autoimmune hepatitis.

[cctexan]

I'm in aa and find it helps w my spirituality .. To find calmness and clarity. Plus it helped me get sober in those earl days. But after awhile.. The craving for a drink leaves after the first 30 60 days as long as I don't put first one in.

Now if I could do that w ciggies. Lol. I'm using the vapor digs and its working now that I got the right kind ( bigger hit, deeper draw) no real missing of m Marlboro

Best of luck to all. I've seen miracles of the liver. People that were dying of liver disease that stopped drinking and it regenerate d. I choose to see a higher power working. My hep c disappeared without treatment or meds and has been that way for12 years even w my near death experience.

Have gentle day

[Liesel in reply to cctexan]

Poor old you. I was OK at giving up booze but cigarettes are really terrible! Everyone is different.

Liesel