Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Liver Disease

Personal Stories, Advice, and Support 55 People

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 61-65, M Oct 4, 2013

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I have not been diagnosed

    as of yet, I am 47 and use to be a fairly healthy drinker, all tests are normal,but I can tell something is very wrong. Dull pain under right rib cage, unexplained weight loss (20pounds) extreme sensitivity to even a sip of alcohol or red meat, weak legs, and occasional anxiety...
    skyriter88 skyriter88 46-50 Sep 10

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 1 Response Oct 22, 2011

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Can someone here explain to me the kind of pain

    and location they had/have during issues with their liver? And any other symptoms? I have been having mild but persistent acking, burning pain that kind of feels like cramping in my upper abdomen. There is also one tiny spot that hurts when I putt pressure on it. Also a slight...
    MeowOnMe MeowOnMe 18-21, F 2 Responses Aug 28

    Your Response

    Cancel

    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 2 Responses Oct 30, 2013

    Your Response

    Cancel

    Related Experiences

    So after beating cancer, then I go and get diagnosed with such a rear extremely painful disease, that not even my doctor of 30 years ever heard of it. Here are a few links to info...
    johnnystar4u johnnystar4u 41-45, M Nov 2

    Your Response

    Cancel
    Was diagnosed with Hashi's two months ago after two years of doctor after doctor, misdiagnoses and mismanaged meds. Extreme fatigue, dizziness, headaches, brain fog, exhaustion...
    craigrhodes craigrhodes 46-50 1 Response Nov 10

    Your Response

    Cancel
    And it sucks! Not being able to eat what you what and getting sick if you eat out!
    justonelick justonelick 31-35, F 2 Responses Nov 9

    Your Response

    Cancel
    Technically, he is now a "dry drunk," because he no longer drinks (he has end stage liver disease), and he refused any help medically or psychologically to dry out. His behavior...
    Harley53 Harley53 56-60, F 3 Responses Nov 16

    Your Response

    Cancel
    Hello everybody, I am a 29 year old woman who has rheumatoid arthritis. I was first diagnosed with this disease 2 weeks after my 24th birthday , let me just say this disease is a...
    dreams1977 dreams1977 26-30, F Nov 15

    Your Response

    Cancel
    In year 1992, I came down with Ramsay-Hunt Syndrome. Its been a long battle. My face first paralyzed on one side and three months later, the other. This has affected my vision...
    Gustavp Gustavp 70+, M Nov 16

    Your Response

    Cancel
    I have had herpes since 2011 and the doctor diagnosed it by the sores as something entirely else, but I know that is what it is. My fiance at the time had a cold sore on his mouth...
    iamdiva iamdiva 22-25, F 2 Responses 3 days ago

    Your Response

    Cancel
    Math word problem: if you have 4 pencils, and 7 apples, how many pancakes will fit on the roof? Purple. Because aliens dont wear hats. :) I also have ADHD. Or its more like i just...
    cra2yk1d cra2yk1d 13-15, F 4 Responses Nov 8

    Your Response

    Cancel
    Every once in a while there is a breakthrough in Parkinson's research that gets me hopeful that there will be a cure, or at least a really significant improvement in treatment...
    LifeinWoodinville LifeinWoodinville 41-45, M 1 Response Nov 7

    Your Response

    Cancel
    My daughter is 16 and just diagnosed with autoimmune hepatitis. I am an RN with a Masters degree, and so have some training in evaluating research. I have been researching like mad...
    Alyshamom Alyshamom 41-45, F 2 Responses Nov 10

    Your Response

    Cancel
    So in 2010 I was diagnosed with a extremely rare disease named Dercums' Disease aka Adiposis Dolorosa. For many years after surviving cancer (Acute Lymphotic Leukemia), I had what...
    johnnystar4u johnnystar4u 41-45, M Nov 8

    Your Response

    Cancel
    Gerrard alone cannot win matches,Sad Day for Liverpool Fans
    rameez697 rameez697 26-30, M Nov 8

    Your Response

    Cancel
    Who else is watching the Liverpool game? 😭
    kathyvivi kathyvivi 22-25, F 5 days ago

    Your Response

    Cancel
    Who else is watching the Liverpool game? 😭
    kathyvivi kathyvivi 22-25, F 5 days ago

    Your Response

    Cancel
    Who else is watching the Liverpool game? 😭
    kathyvivi kathyvivi 22-25, F 5 days ago

    Your Response

    Cancel
    I was diagnosed with CIDP when I was 12 (year 7) and I laughed when they told me because even though I had no idea what it was and the name was such a mouthful, I was relieved to...
    AlexPeyton AlexPeyton 18-21, F Nov 2

    Your Response

    Cancel
    Shock is obviously the first reaction but having then seen and spoke to her in a strange way I feel relief for her. This might help people who know anyone that is suffering with...
    PaganumCultumLuna PaganumCultumLuna 31-35, F Nov 2

    Your Response

    Cancel
    I have a Demyelinating Disease. MS is also one of these diseases but mine is a new type. I have lesions scattered through out my brain and on the underside of my Corpus Collosum...
    BCulp38 BCulp38 41-45, F 1 Response 5 days ago

    Your Response

    Cancel
    A mind that is not narrow but shallow, the power of being objective, innocent until proven guilty, self-esteem. All these are abilities a person has to develop in his life. Me, I...
    biancabirsan1994 biancabirsan1994 18-21, F 2 Responses Oct 29

    Your Response

    Cancel
    scriptURE FULFILLED IN MY LIFE Oct.1947: “My substance was not hidden from Thee, when I was made in secret, and intricately wrought in the lowest parts of the earth. Thine eyes...
    jburns1947 jburns1947 61-65, F Nov 3

    Your Response

    Cancel
    I was diagnosed with Crohn's Disease when I was 9, somewhere around 2005-07. I had the worst case you've ever seen, but luckily don't have a colostomy/colon resection, I'm thankful...
    ilovemckayla ilovemckayla 26-30, F Nov 3

    Your Response

    Cancel
    http://www.dailystrength.org/c/Hidradenitis_Suppurativa/forum/12075338-hs-awareness-purple-ribbon-campaign I had no idea there was a ribbon for this .... I'm glad there is I...
    MsAnonymous1 MsAnonymous1 18-21, F Nov 4

    Your Response

    Cancel
    Greetings. I'm a 49 year old male and I was diagnosed with EF just under 3 years ago. I started on 60mg of Prednisone and am now down to 20mgs a day. I'm not sure which is worse...
    Gobione Gobione 46-50 Nov 5

    Your Response

    Cancel
    Full moon + Alzheimer's Disease = No fun.
    Myzery Myzery 31-35, F 1 Response Nov 6

    Your Response

    Cancel
    It all started two years ago. I was 21. I had viral pneumonia and it went on for too long (probably bc I never took a day off to really recoup). It started in my mouth near the...
    cpnhook21 cpnhook21 22-25, M Nov 10

    Your Response

    Cancel
    I am sad. I hope I can get a diagnoses and move on with my life. I just want to gain some knowledge and prevent more damage. I am only in my 20s. However, I trust that God will...
    HigherCalling HigherCalling 22-25, F 1 Response Nov 11

    Your Response

    Cancel
    This is my first post on EP but looking forward to sharing with others. I have Crohn's disease and life has never been easy. I'm a glass half full kind of guy so even on bad days I...
    BrianIBD BrianIBD 31-35, M 1 Response Nov 12

    Your Response

    Cancel
    I was first diagnosed with transverse myelopathy in 1999 and my neurologist at the time gave me gabapentin and told me it would eventually go away and never come back. Well, it...
    manypenguins manypenguins 56-60, F 2 Responses Nov 14

    Your Response

    Cancel
    The summer after 5th grade, i started to choke on all my food. i thought it was maybe something that would go away, and i didn't want to tell my mom because i hated going to the...