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I Have Liver Disease

Personal Stories, Advice, and Support 51 People

    Hi I was just diagnosed with AIH

    or autoimmune hepatitis. I'm 17 and hopeful. I started taking budesonide and after my next round of blood tests i will start taking Imuran. I'm still experiencing fatigue and chronic joint pain but I'm trying to stay active. There's a quote that says "Things turn out best for...
    Ahall96 Ahall96 16-17 2 Responses Jun 2

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    AIH

    Hey guys I'm a 23 year old with auto-immune hepatitis. I was diagnosed with it at 14, and been fighting it ever since. Like most of you on here, it affects my life in the usual ways. I don't drink, and I try to eat as little fatty foods as possible. If anyone wants to chat...
    homecoming1 homecoming1 22-25, M 1 Response Mar 8, 2013

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    Not Lucky

    im 29 years old with advanced liver disease due to alcohol..i do not drink daily maybe my body just dont have the ability to eliminate it. im from a country that liver transplant is so expensive i don't have the money to buy medications so im not taking any,im still working even...
    walkingdeadman walkingdeadman 26-30, M May 19, 2013

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    Just Diagnosed With Alcoholic Hepatitis And Terrified!

    Well, I drank for years due to depression, loneliness and going to New Orleans bars too often with my husband. I have always had an emotional and addictive personality. GI doc told me I had inflammed liver. I discovered that it was truly hepatitis by doing my own research and...
    AlabamaGirl56 AlabamaGirl56 56-60, F 1 Response Oct 30, 2013

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    Fighting With My Body

    Hi!  I am clearly new here and do not know exactly where to begin so here goes... About three years ago I as diagnoses with non-alcoholic fatty liver disease-Stage 4 cirrhosis with secondary portal hypertension.  I am 35 years old.  The anomaly which is also the reason my...
    hopefultc hopefultc 31-35, F Oct 22, 2011

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    Not Lucky

    im 29 years old with advanced liver disease due to alcohol..i do not drink daily maybe my body just dont have the ability to eliminate it. im from a country that liver transplant is so expensive i don't have the money to buy medications so im not taking any,im still working even...
    walkingdeadman walkingdeadman 26-30, M 2 Responses May 19, 2013

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    My Dad's Hope

    I want to share my Dad's story with the world, so his hope can spread. He was an heavy drinker for most of my life and quit over two years ago. A few months ago he was diagnosed with end stage liver disease. He was on the transplant list and not doing well. His meld score reached...
    lakebaby lakebaby 31-35 3 Responses Jul 11, 2013

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    Scared...

    Well this is where it all started... I just had mine and my husband's second child on June 10th 2012. On the last day in the hospital my blood pressure shot up really high. We were able to leave the hospital with me on blood pressure meds. I went in to the doctor the next day for...
    Brittdaisy Brittdaisy 22-25, F 1 Response Dec 31, 2012

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    I Turned Down A Liver. Did I Make The Right Decision?

    I have been on the transplant list for 5 years. I have hepatitis "C" and my MELD score has been stable for about a year. It stays right around 16. My blood type is B+ and I am 3rd on the list of patients with B type blood. The 2 people ahead of me have both developed liver cancer...
    ArizonaSteve ArizonaSteve 51-55, M Sep 24, 2012

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    Pain & Raised Enzymes Advised - Terrified

    Hi All, I am a long time user of co-codomaol and other migraine related medicines. I suffer from headaches daily and as such, to get through my day pop pills. When the migraines come, that intensifies, anyone who suffers will be all to aware you will do almost anything to...
    stevied553 stevied553 36-40 2 Responses Dec 7, 2011

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    Hi... I am new to this

    so trying to understand how this has all happened. In January this year I opened some boxes ... got really sick and as a result my body started to shut down. As the weeks went on I didnt get better... I had blood in my urine and was sent to a specialist ... they thought I had a...
    Suem01 Suem01 46-50, F 1 Response May 30

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    Chronic Hebatitis B

    Been dieagnoses two or three years ago not sure not sever enough for treat ment thank god my health is perfect they say to me tho they tell me not to drink tho i do at times go on binges but im careful to take breaks in between to give my liver a chance to repair itself i...
    ccdo ccdo 22-25, F 2 Responses Nov 18, 2009

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    My Brother Has Alcohol Liver Disease

    i just wanted to share this story with people so others can have hope also... my brother who is just 32 has been a big drinker for many years but was alcohol dependant for the last 5years.. he has been told several times that he had an inflammed liver and had jaundice this was...
    jenny1981 jenny1981 26-30 3 Responses Jan 31, 2011

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    To Others In The Same Boat...

    I'm 25yrs old and have liver disease caused by Porphyria (a hereditary disease). Liver disease isn't pleasant. The jaundice and ascites turns you into an oompaloompa (willy wonka reference). Just carrying that extra weight around is a strain alone. I once had 16L drained from my...
    MsMidnight MsMidnight 22-25, F 3 Responses Sep 5, 2010

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    Non Alcoholic Liver Disease (nafld)

    Please let me first say that I respect and realise that many others here have more irrevocable conditions that the one I am facing- but I really am seeking a genuine place to talk with people about liver Disease- and I would love to hear your expereinces as well as share my own...
    Sekem Sekem 36-40, M 5 Responses Sep 29, 2010

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    Lver Failure

    i was diagnosed with hep c in 1995 am currently in a great deal of pain, am currently on morphine contin 90 mg a day, this isn't working for the pain any sugestions, we don't have a pain clinic in the town i live in. not sleeping well up every 2 hours in pain. live with mom and...
    dennis3999 dennis3999 56-60, M Oct 4, 2013

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    I Have End Stage Liver Disease Secondary To Cirrhosis .

    I was a heavy drink and at the time I came down with a very bad kidney infection. Not realizing that my kidneys were shutting down and thus backing up my system to the point where I went into full renal failure. I was hospitalized for ovr 2 months and the Dr's did not expect me...
    enduser2941 enduser2941 36-40 3 Responses May 29, 2011

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    Related Experiences

    I got diagnosed about a year ago and everyone's always thought I was always scared do to my bulging eyes turns out I have Graves' disease
    germany100 germany100 18-21, F Aug 12

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    I know what you're going through and I'm so sorry that you are. When I read this group and the postings in it, I cried the entire time because your experiences are eerily close to...
    smgreen1703 smgreen1703 18-21, F 2 days ago

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    i started having panic and anxiety attacks when i was 9. people thought i was being abused i wasnt and didnt know what anxiety was i was 9! it wasnt until i was 23 that a keen...
    ericseamless ericseamless 31-35, M 1 Response Aug 11

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    More truthfully, my 4 year old has Wolman Disease. Does anyone out there have this? Live with this? Have a child that is healthy and living a happy life despite this? I'd love...
    AquaMama AquaMama 31-35, F Aug 4

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    I was born with a small right ventricle that doesn't pump so now I am living with half a heart! Stroke survivor, open heart surgery surviver, 3 major heart surgery survivor.
    Klcataldo Klcataldo 18-21, F 1 Response Aug 12

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    I was recently married and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results...
    Ilovetosing626 Ilovetosing626 26-30, F 4 days ago

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    I Need a Liver For My Dad My Daddy was recently diagnosed with hepatitis B, this was found at a very late stage in the disease. Only a few months later he developed full-on...
    asvprasadrao asvprasadrao 26-30, M Aug 3

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    I want to help others, I have on my bucket list donate half my liver, I want to give someone life/ a better life, I wish I would be able to meet them but idk if I will be able to...
    LostItAllBVB LostItAllBVB 13-15, F 1 Response Aug 6

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    Hello everyone, I have had to find a place to vent my frustrations and hope that putting my experience into words will help me on my current journey. The lack of support from...
    linrob14 linrob14 46-50, F Aug 4

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    Hello everyone, I have had to find a place to vent my frustrations and hope that putting my experience into words will help me on my current journey. The lack of support from...
    linrob14 linrob14 46-50, F Aug 4

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    At 12 I started to notice a mood and personality change and have chalked up my sadness, mood swings, lack of interest, and inconsistent insomnia to near comatose states to being a...
    Bobbyckat Bobbyckat 18-21, F 1 Response Aug 15

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    My mom told me once that her disease made her feel like an octopus. I said what do you mean? She said her arms and legs feel like they are out of control. She wants a tattoo. She...
    WildHydrangeas WildHydrangeas 26-30, F 11 hrs ago

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    Did anyone else contact this disease right after receiving vaccinations? I contacted this disease one week after receiving TDAP and Shingles vaccinations.
    Bluesntennis Bluesntennis 66-70, M 4 days ago

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    My family has a history of diseases, especially cancer. These diseases were what left my mother and her siblings orphans at young ages. I knew that one of my grandparents was...
    JumpingTomatoes JumpingTomatoes 16-17 Jul 30

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    After a childhood filled with severe pain, day after day in bed..... countless visits to Hospitals...Mri scans...specialist appointments which amounted to nothing, no one could pin...
    thedayyouwentaway thedayyouwentaway 36-40, M 2 Responses Jul 31

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    I have had the disease since I was little, it didn't bother me much as a child. My favorite thing to do as a kid was swim. All my birthday parties were at the pool ( I didn't have...
    Iaquinto Iaquinto 22-25, M 1 Response Aug 3

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    I am 37 and have been diagnosed with MSK for 10 years now. I have two fantastic boys ages 16 and 17 and a very loving husband who is always ready to go to take over when I am sick...
    stonergirlstwins stonergirlstwins 36-40, F Aug 11

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    I'm not sure if I'm even reaching the right support group. I'm 32 years old I have just been diagnosed with Mixed connective tissue disease a few months ago, I have had 3 grand mal...
    monim23 monim23 31-35, F Aug 11

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    I'm on Day 4 now. I noticed some rashes three days ago but ignored it. I thought that some insect may have bitten me. I was without symptoms in general. The other day, I noticed...
    mareliberum mareliberum 26-30 2 Responses Aug 11

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    March, 2013 I was told I had polymyositis. My Doctor said I was using 20% of my muscle. I lost my job and living on SSD. My treatments are IVIG and predisone. When I first...
    Numberplay Numberplay 46-50, F Aug 17

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    I have polycystic kidney disease. The largest cyst measures 6cm in right and 5cm in left kidney. the latest scan report says that 'corticomedullary differentiation lost in with...
    aneetasree aneetasree 31-35, F 5 days ago

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    Yesterday, something happened to me that scared the crap out of me. For more than ten years, I have had Ménière's disease. I was shopping in Target when I was suddenly hit with...
    scottdavidsmith scottdavidsmith 46-50, M 1 Response 5 days ago

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    A couple of years ago, I tried to kill myself by taking a bunch of acetaminophen. I had already been taking them religiously for about a year, and got pissed and tried to end...
    AmarieSkyFlower AmarieSkyFlower 22-25 1 Response Aug 4

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    I have friends that literally drink 15-20 beers 2 to 3 nights a week and I can't help but ask why. Getting drunk sucks. You're out of your mind doing things you wouldn't do sober...
    ifearsnowmen ifearsnowmen 18-21, M 4 Responses Aug 19

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    so I've had gum disease for pretty much my whole childhood all the way to now; and last year it got real bad, part of my gums had swollen and I didn't know what to do! my grandma...
    gypsykk gypsykk 18-21, F 2 Responses Jul 27

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    I work in a VA hospital which makes the possibility of seeing death a daily fact of life. Before that I was a medic in a combat zone, again a daily chance of witnessing death...
    hawkeye67 hawkeye67 46-50, M 1 Response Jul 27

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    Like a diseased tree, I've cut off the final toxic branches of friendship, which has left me feeling a bit desolate and depleted. I am not talking about online friendships. I'm...
    PlasticRobot PlasticRobot 36-40, F Jul 28

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    My greatest fear is not being able to have children. Ever since I was little I knew that I would want to be a mum someday. Then I started having strange nightmares about babies...
    Starkillera Starkillera 22-25, F Jul 29

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    I remember when I thought about overdosing.. I still do.. I'm thinking about it right now. Most people when I tell them this they say stop being selfish and trying to take your...
    SPNPLL SPNPLL 16-17, F 1 Response Jul 31

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    I have had morphea since 1965 at the age of 14. Back then it was extremely rare to find a doctor who even knew what morphea was. My morphea started as a round spot on my wrist...
    Muffygirl Muffygirl 61-65, F 1 Response Aug 1

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    In 2009 I was diagnosed with pandysautonomia - POTS after getting ill from having a flu shot. It has completely taken everything away from me. I have had problems with my blood...
    Buffy2014 Buffy2014 31-35, F 1 Response Aug 5

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