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Posted 12/13/2005 3:14 PM (GMT 0)
hi, my names zana and im 16 years old. i was diagnosed with autoimmune liver disease last year and i hate it basically!!! At 16 years old  all my freinds drink alcohol, smoke and go out constantly and im finding it hard to not do all these things. Is it true that this disease i have makes you more tired and weak? because i always seem to be wanting to climb into bed and snooze and my frineds think im weird because i cant drink with them. I dont like being the only one who isnt drunk...Im the only one who is actually sober and i have to look after everyone else. its not fair. And i know i shouldnt have this attitude but really at 16 can u stop me drinking?? If i did drink whilst i have autoimmune liver disease does anyone know how this could affect me? and plus the fact....i read a post about a little girl who got a 'moon face' after having steroids...im on them too and i am fat. i dont know what has happened to me but i just cant stop eating its crazy. im 12 and a half stone, 5ft 11 and i feel disgusting. schoolwork i cant cope with and peer pressure is too much. so im all miserable at the moment...anyone got any info or advice for me?

scool   if your not living on the edge...your taking up too much space....

 

kisses

xxx

 

Posted 12/13/2005 11:42 PM (GMT 0)
Hi Zana.
I know how you feel when everyone else is drinking and you can't. (especially at christmas with all the parties) I have had two drinks in the past two years (at my son's wedding). You really have to do as the doctors say. Alcohol will cause more damage to your liver and the end result could be a transplant which you certainly don't want at your age. You would be on anti rejection medication forever.
I know I'm much older and it is hard for you to relate to someone older than your parents comparing themselves to you but try to live the "healthy" life. Ask your friends to have some alcohol free nights so you can have as much fun as them.
The moon face happens to most who take Prednisone but I have been fortunate. I have also been very strong and fought the urge to eat all the time. I go through stages where I have an uncontrollable urge to eat but as soon as the kilos start packing on I get back on the fresh fruit and vegies and i lose the extra kilos.
Good luck. Don't give up. I read about those with multiple autoimmune disorders and feel quite fortunate. (only sometimes. At other times I feel sorry for myself just like you)
Posted 12/13/2005 11:44 PM (GMT 0)
Hi Zana.
I know how you feel when everyone else is drinking and you can't. (especially at christmas with all the parties) I have had two drinks in the past two years (at my son's wedding). You really have to do as the doctors say. Alcohol will cause more damage to your liver and the end result could be a transplant which you certainly don't want at your age. You would be on anti rejection medication forever.
I know I'm much older and it is hard for you to relate to someone older than your parents comparing themselves to you but try to live the "healthy" life. Ask your friends to have some alcohol free nights so you can have as much fun as them.
The moon face happens to most who take Prednisone but I have been fortunate. I have also been very strong and fought the urge to eat all the time. I go through stages where I have an uncontrollable urge to eat but as soon as the kilos start packing on I get back on the fresh fruit and vegies and i lose the extra kilos.
Good luck. Don't give up. I read about those with multiple autoimmune disorders and feel quite fortunate. (only sometimes. At other times I feel sorry for myself just like you)
Posted 12/14/2005 4:39 PM (GMT 0)
lol. thanks for ur reply. surely if u were sick after having alcohol it wouldnt matter so much tho because then it wouldnt be in ur body? i dont normally feel so bad i think i was just in a miserable mood that night lol. i need to be strong and resist the urge to eat so much as well. but its hard.when you say try to live the healthy life....thats all well and good but the healthy life isnt neccesarily the fun life..id like to try out new things and suchlike even if it does knock a couple of years of my life because i know that iw ould have lived my life and not worried about whether another choc bar is gonna clog up my arteries. i used to be really brainy...i got an a*, 6 a's and 3 b's in gcse...but now in my a levels iv got a bad attitude and its awful lol. and i kinda have to admit i have had a few drinks....but none of my blood tests or anything suggest my liver is worsening so...?
xxxxxxxxx
Posted 12/14/2005 6:38 PM (GMT 0)

Hi Zana,

I sympathyse with you, it's so tough to be different in any way when you're a teenager. I had a liver transplant earlier this year down to possible AIH (don't worry though, it's very unlikely this will happen to you AS LONG AS YOU LOOK AFTER YOURSELF!! Most people with AIH manage it with medication, and transplants only happen in a few cases - they're not even sure if mine was AIH)

I'm 25, young free and single, so although I don't have the same temptations as a 16 year old, I know how hard it is to have to think about your health all the time, when all your freinds don't give it a second thought. But thinking that you don't mind having a couple of years knocked off your life as long as it's a good life is the way a lot of people think when they are young, but unfortunately life just isn't like that. You don't just have a fantastic life then suddenly die; you get ill, very slowly and painfully and your family watch you suffer and fight for life, you suddenly have more to worry about than weight gain and chubby cheeks (though i understand how annoying that is!) and finally you may end up on the transplant list, and if you're fortunate to receive one, then you have a long way to go to recover and then really have to watch your health for the rest of your life. I know this sounds harsh, and I really don't mean to scare you. I totally know how you're feeling - it's just so unfair that you have to deal with this at your age, along with all the usual teenage stuff, but this is the reality you're faced with. However, if you do watch your health and take those horrible pills, you can live a very normal life, with just a few adjustments. I hate the predinsolone -I'm 25, but when on steroids people think I'm 17 cos of the chubby cheeks! But it' a neccessary evil I suppose.

Every drug you put in your body -from paracetamol to alcohol- goes through your liver, even if you puke it up an hour later the alcohol is already in your blood stream. I suppose one way to deal with not drinking when your freinds are is to find other things to do - I know this doesn't sound like as much fun as partying with your freinds, but you could try taking up sports (if you haven't already, and if you're well enough that is) which would also help with the weight gain. If you're focusing on something else, something healthy, sometimes it really can take your mind off those tempting unhealthy things.

I don't mean to sound preachy, cos sometimes I don't follow any of my own advice and I'll be honest with you - I still drink in moderation (I do have a healthy liver though, it's more my general health I need to watch) I've tried to find a balance between living my life the way I want to live it, and living it the way I 'should' live it, and I have found it very difficult - it's something I never had to think about before. I just hope you don't go into the 'live fast and die young' way of thinking, because I know some people get away with it, so it's tempting to think you will too, but you won't get away with it for very long.

I wish you the best of luck! I hope you find a way to deal with all of this, it's a lot to cope with at your age. But being a little different from everyone else will teach you to be strong  - though that probably isn't much consolation to you now!!

Cazza

Posted 12/14/2005 8:17 PM (GMT 0)
hi cazza, ur reply was so sweet it was really good to read and i hope that when im 25 i have the same view on the world as you because what you have said made me think about stuff. I find it quite strange to be talking about this disease iv got because people im talking to understand what im going on about...my mates just laugh it off or think im an alcoholic. and your right i was bending towards the live fast die young attitude but im going to try and stop that. i used to be really slim-people used to say i should be a model with my height and features....but now iv got the weight to go with it! grrr. the tablets i dont mind actually, they are easy...i think i take 15 a day but u can take them in handfuls. another thing i want to know though...is..do we have to pay for our medication once we leave education...i keep reading contradictory things. eek! lol. im considering going to university abroad and i wondered if medication fees were different. i live in the UK. if anyone knows anything it would be great if you could let me know.

cazza, whats having a liver transplant like? were u scared? how long were u in hospital for? are u from the UK? why did they give u a transplant- did u have awful symptoms of AIH or what? and by the way....i know im nosy!!!

zana
xx
Posted 12/14/2005 8:42 PM (GMT 0)

Zana;  it must be hard not being able to do what your friends do but they dont have your medical problem. Alcohol can destroy the liver even if its not diseased. If hanging out with these friends puts pressure on you to drink, you might want to find friends who dont drink. All teens dont drink,smoke or do drugs and remain cool. If they are your true friends they will encourage you not to drink so you will be around to continue to be their friend.  Research your medical condition to find out all the facts on alcohol and what it does to the liver and other organs. ( get high on life, theirs nothing better ) Please continue to visit the healing well , their are other young people here with many medical problems that would love to be your friend and can give you support. The chat rooms are a good place to make friends who understand what your going through. Ill keep you in my prayers.

Posted 12/15/2005 4:59 PM (GMT 0)
Well nosy :-)

I am from the UK. You will have to pay for your meds (unless you're on income support or something) but you can buy a prescription pre-payment certificate, which works out pretty cheap really - probably about a tenner a month (can't remember exactly how much as my dad paid for my last one!)

I'm still not sure whether I definately had AIH, it was strongly suspected, but never confirmed. I was abroad at the time, and when I came home I had been ill without treatment for months and was considered for the transplant list straight away (didn't find this out until much later) but they managed to control my condition with drugs...for a few days. I kept telling them I was getting worse, but they kept telling me my bloods were improving, until three weeks later I went deranged and didn't know what was going on (this is encephalepathy - when the liver is functioning so badly, there are so many toxins in the body it starts to affect the brain and your personality) and went into a kind of coma then woke up in another hospital and was told I was being placed on the super-urgent transplant list. Very few people are placed on this list, as most people detiriorate at a much slower rate. I had to wait 6 days (which is a long time on the super-urgent list). It was scary, but to be honest, I was so sick of feeling sick I would have hopped on to the operating table if I could have! I was delighted when they said they had the liver for me. The biggest suprise was how quickly after the op I started feeling better - my mum said that straight after the op when they brought me to ICU and I was still sedated with a million tubes coming out of me and attached to a million machines, I had a better colour in my cheeks than she had seen since I was admitted to hospital. I still had a long way to go, but it was a relief to start feeling a little human again.

The thing about the liver is that it has a tremendous capacity for renewing itself. The liver never really grows old, which is why they're so successful as transplants. I think some people can also function quite well with even as much as 70% of their liver damaged (though not always). The problem is when repeated damage causes a build up of scar tissue and eventually scar tissue starts to replace healthy liver cells - this is cirrhosis, and it can't be reversed, though I think a lot of people with cirrhosis don't need transplants. There comes a point - which you will probably never reach, when there just isn't enough liver function to sustain life, and this is when you need a transplant. Most people are put on the list before this has happened but when it seems inevitable.

The thing is, AIH, if left completely untreated would be fatal. You cannot live without your liver! But if it's managed well, I think most people can lead a relatively normal life, and transplant is rare. It varies from person to person, but there's always something the doctors can do for you.

It's horrible putting on weight from drugs isn't it. I'm retaining loads of water at the moment -cos of the steroids i think, and my thighs look like jelly. But you're tall and that weight doesn't sound too bad for your height. Have they said anything about reducing your pred? For most people as soon as they start reducing it the weight starts coming off.

I think I answered all you questions!! If you have any more I really don't mind, my freinds and family must be sick of me going on about it so I don't mind going on about it to you!

Take care,

Cazza

Posted 12/31/2005 12:08 AM (GMT 0)
Hi!  I'm curious if the prednisone is for liver inflammation?  Cazza, I know you are taking it as an antirejection drug, part of the liver transplant protocol.  I am TOTALLY anti-prednisone, although I know some people have to take it and benefit from it.  I had to have hip replacements because of AVN/ON (avascular necrosis or osteonecrosis), and the #1 reason for AVN is prednisone usage.  In my case, it was thought to be alcohol abuse, although I had been alcohol-free for 16 years prior to the diagnosis (now nearly 20 yrs.)

I can thank my IV drug use in the 60s...for just 18 months...for causing my hepatitis C, which has turned into liver cancer.  I have been clean from illegal drug use for 20 to 36 years, depending on the drug.  I gave up cigarettes 3 years ago, and for the past year I've been drinking green tea instead of coffee.

So, Zana, you can see what has happened to me...living life in the fast lane.  You already have a liver disease...so anything you put into your body that you shouldn't is going to have an effect.  Maybe not tomorrow or next week...but the time will come when you will find yourself one very sick person.

I don't hang out with people who are drinkers...though if they just drink one or two on a special occasion and can handle it okay...it doesn't bother me.  On those special occasions, I drink non-alcoholic Cold Duck or non-alcoholic beer, which serves the purpose of helping me feel not so left out and "different."

Just some things to think about.  ;)

 

Posted 1/15/2006 6:56 PM (GMT 0)
iv lost a stone now im now 5ft 11 and 11 and a half stone :) still kinda fat tho
Posted 1/15/2006 10:21 PM (GMT 0)

Zana, congrats on your weight loss, though I haven't a clue how much a stone is!  :-)    I'm in the USA.  tongue    Gosh, you are tall.  You can handle a lot of weight at that height.  I'm a mere 5 feet.  Every ounce shows on me.  sad    However, I'm not obese and am more concerned about my health right now than my weight.  I know I've gained because I am unable to walk much.  I used to walk everywhere.  I am in a hip/leg brace and on crutches because of the avascular necrosis.  I need another surgery, but they won't do it because of the cancer.  eyes

Take good care of your body, Zana!  It's a gift.

Connie

Posted 1/16/2006 12:05 AM (GMT 0)
Zana, way to go. with my inability to do much I've gained a ton. A lot of that is from acetis & edema, but still. Anyway keep up the good work girl. Take a bow you deserve it!I'm 5' 2" & look like a beached whale.later....
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