Tell us your story
If you or someone you know has liver disease, talking about it publicly might be a little scary. And yet, sharing your story invites others to share their stories and together you help create a more realistic picture of the life-altering impact of liver disease. It is the real stories behind liver disease that ignite passion and demonstrate to individuals, governments, corporations and media that this is a health issue that deserves more attention and investment.

In this special section, we invite you to share your personal experiences with liver disease. Your story may give hope or inspire others to seek help, volunteer or give.

Click on Share Your Story below to get started.


Living with Hep C,3a Liver disease,

Im a 51 year old woman who has been diagnosed with fibromyalgia,Depression,Raynauds Syndrome, Degenerative Disc Disease, 0te0 arthritis and several more conditions,ive had hep c for a while now but was unable to get treated because I was severely depressed,I just found out that I have 3a liver disease.Not sure what that means as I don't understand all the large words the nurse was telling me over the phone, any help/input would be greatly appreciated.I GI for an upper scope on 5-3-2017 then a colonoscopy later plus mammogram, and breast exam on a little scared...  Read more

My journey

Hi my name is Linda at age 44 I was diagnosis with ulcerative colitis and psc over the first few years the itching was the worst for me the jaundice had started years went buy and in 2014 I was hospitalized 3 times in that year went on transplant list in August waited for a year and a half then in December 2015 my bilirubin went to 600 at the hospital I was air lifted to Halifax and a week later had my transplant it's been 15 months since everything is going well don't no how to thank all the family and friends hospital staff for everything and for the family who made the...  Read more

Drug-induced liver injury / acute failure

Ciprofloxacin helps many people, but four tablets caused complete acute liver failure for me. I was out of work for almost 5 months, and it took almost a year for my labs to return to the normal ranges, but I have residual URQ pain. People say our liver doesn't feel pain, but if I eat certain foods/too much food, or get too stressed, mine aches. Anyone else have that aching feeling? Just having "normal" numbers in the labs does not tell the whole story. Living with it, but not liking it. Have changed how I eat (small bits multiple times a day) and what I eat. Glad I...  Read more

Hepatocellular carcinoma and immunotherapy

In June 2014, four months after a liver resection, my hepatocellular carcinoma (HCC) diagnosis was terminal. My AFP tumor marker was 47,000. My family started searching worldwide for treatments. Within two weeks I found this press release “Immunitor’s Breakthrough in Cancer Immunotherapy”. A proof of concept clinical study of V5 treatment for HCC in Mongolia. The treatment is an orally administered Immunotherapy developed by the company Immunitor. After my terminal diagnosis I tried standard of care treatments that might increase life span. Also, I...  Read more

Cystic liver

For 6 yrs I had extreme abdominal pain. I was probably at my GPs office easy 100 Times in 1 year. I performed all the tests and had seen handfuls of doctors and Specialist. It felt like my my abdomen was literally being crushed. On the 7 yr I struggled to breath, was vomiting green, eyes turning yellow and was screaming in pain for 2 months I was told nothing wrong, I can't help you,  muscle pull and drug addict. I didn't give up. I advocated for myself through education and networking I realized it was the cyst on the liver the whole time but no one believed  me or...  Read more

I thought I had angina

After several episodes of severe pain that started in my hands and arms, spread to my jaw and onto the right side of my chest, I went to the doctor thinking I had angina. After questioning me carefully, he sent me for an ultrasound of my belly which in turn revealed fatty liver disease. That was over a year ago and even though I have eliminated many of the "bad" things from my diet, I still eat potato chips and french fries, although not as frequently as I used to, because of the episodes of terrible, albeit brief, pain when I do. I am fully aware that I risk damaging my...  Read more

A little help with the wait. It's not easy. I'd like to help. From a liver transplant survivor.

I would like to volunteer my experience with those who are in the most difficult process of transplant. The wait. I have pledged after my experience with liver failure to do what I can in person if possible to have a chance to talk and share my beautiful journey, struggle and ultimate recovery that I have no doubt others would be interested in hearing. Your not in this alone. My name is Jay, I'm 41 and would love to hear from anyone who wants some understanding respectful inside from an honest person who genuinely understands what you are going through. 

If you...
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Acute Vanishing Bile Duct Syndrome (VBDS)

In September 2015, I became very ill with a sore side beneath my right side rib,
Itchy skin, dizziness and the starting of sores on my skin. First, I thought I had the flu and that I thought I would get over it within a few hours. I didn’t go into work first thing in the morning and later on in the afternoon I started to feel better so I went into work. I was working out of town at the time and by 4pm I called it a day. I still felt ill and ended up throwing, diarrhea and for the next 2 days in the hotel room. I returned on the Friday from the week away to hopefully...
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I got pain on my right side 2 months ago and thought that is due to kidney pain, So I just go to a drag store and got some Ciprofloxacin 750mg Tablets and got this medicine for more than 15 days but not get result finally I went to doctor for check up, When the doctor did ultrasound test he said you got fatty liver not kidney stone on your right kidney but a small kidney stone in your lift and that is very easy to lose. For your fatty liver disease you must not eat white bread, meat...etc. He asked me to just eat vegetables and change your life by regular sporting! from...  Read more

The Demon in My Blood

I've spent most of my adult life as a journalist. Then in 2014 my career screeched to a halt when I was diagnosed with liver disease. The hepatitis C virus had swarmed through my liver for 40 years. I was scared I would die. I tried to calm myself by doing research about the liver, exploring how I might have acquired the HCV, and spending many hours blogging ( about hepatitis C. I became one of the first persons in Canada who was cured of HCV without using interferon. The blog led to a book. It tells about my hippie years when many Baby Boomers experimented...  Read more

Don't let disbelievers take your hope away

Before I turned 30 I developed abdo pain after A lawn machine fell in me. After several tests only 2 cysts on he liver were found totalling about 3 Inches. I continued weekly visits to family gp And finally decided to learn to live with it. 6 Years Later the pain became so severe that I continued To go to the hospital and pain management was further Prescribed. The cysts are now 6 in total and Are over 10 inches. The simple liver cysts are turning Complex and bleed. Extreme pain, nausea, green vomit And low appetitive leading to major weight lose. Complex cyst also developed on spleen...  Read more

I saved my mothers life.

My mother was diagnosed with cirrhosis of the liver at end stage she was on a waiting list for a liver that she probably wouldn't ever have got. On October 5th 2015 I gave away 70% of my liver so that my mother could have a second chance. Although it was rough few months recovery the doctors and nurses at Toronto general hospital were amazing in every aspect. Anyone who is going through something similar make sure to stay positive!  Read more


I had hep c I took victralis triple in Vancouver B.C very intense..bucklavere..interferon.ribavin..lost hair. Couldn't stand any aerosol sprays now they say 95 percent chance I will not get liver cancer..I was one of firs in Canada .I waited for it to be approved.  Read more

Looking for live donor

I am a 57 year young woman and after 20 years of dealing with liver disease I was rushed to hospital in July 2014 with a major GI bleed. I went into a coma for 9 days and had a tip installed (shunt) to relieve the pressure on my liver. have spent the last year dealing with swelling in my legs, making it hard to walk. I can no longer work until I get a transplant. I have exhausted my friends and family compatibility and I am now looking for a healthy donor with type O blood to come forward and specifically request I receive their donation of a portion of their liver. Please...  Read more

my daughter (Sabira Hurin Ien) born North Aceh(Indonesia), 15-5-2015, atresia bilier with chirrosis

Sabira was born normally but lab test, she got TORCH (toxoplasmois, rubela,cmv and herpes) POSITIVE, now she is in RSCM Jakarta Indonesia, with Atresia Bilier, need transplant heart from us (parent). We pray to our God to save her. Please help us. Thank you  Read more

Praise the Lord!!

I had been diagnosed with PBC in 2000. At first the disease was controlled by medications including urso. I was still able to work and enjoyed babysitting my grandchildren. About two years ago I started falling and fractured both wrists and have some marks on my legs where I have fallen. Fatigue was constant and the internal itching was driving me mad. I used creams ,meds everything and nothing worked. I praise God for my husband and family and church family who supported me during this time. I received a full transplant this year. My liver was absolutely dead. I had other...  Read more

The Grateful Struggle

Hi, I'm a 49 year old male who has end stage liver cirrhosis. For years there were no symptoms and I was living a "normal" life. My wife and I have two beautiful kids a boy and a girl and for a while there it seemed like we had a charmed life. Then the symptoms started. It's now 2015 and back in 2011, suddenly my stomach swelled and I became very distended. Then my legs and feet became swollen. Went to Emergency and they gave me diuretics and I stayed over night. Somehow throughout the night I was able to urinate all the excess water and everything went back to the...  Read more

Journey - Painless Jaundice Turns into PSC and Cholangiocarcinoma

In July 2014 at 42, I experienced painless jaundice for no reason that I understood. Having travelled for work extensively; this came on quick in Spain, taking me by surprise. I spent from July to September, 2014 undergoing blood tests to be diagnosed in September with PSC. Bilirubin hit a high of 579, and the itching was none like I have experienced before. After many procedures - 9 ERCP's, numerous hospital stays for infection etc; I was diagnosed further in January 2015 with Cholangiocarcinoma at 43. Until this point, all biopsies taken came back negative for carcinoma. ...  Read more

Simpson character in training ... "Bili Rubin"

I am quite new to the autoimmune hep team ... just two months since I was diagnosed with autoimmune hepatitis. It all seems so new and scary to me, so I am blessed to have found a support group to confide in and am hopeful the support system will lessen my anxiety and confusion on the disease! Just a little bit about myself: I am 22 and working towards a Masters in Environmental Science at University of Manitoba. I do try to maintain a relatively healthy diet and live an active lifestyle, so I was very shocked to learn that I suffer from autoimmune hepatitis! My diagnosis...  Read more

Surviving and support with Cholangiocarcinoma

I was diagnosed with cholangiocarcinoma in Oct 2014, I had a liver resection surgery at TGH in Dec 2014 where Dr. Grieg also took my gallbladder. I am a patient at the PMCC for the next five years and have Dr. Knox as my oncologist. I respect these two individuals immensely. I am currently on Xeloda for 6 rounds for preventive measures and keeping our fingers crossed nothing reappears ini my future. It is a time will tell and it sucks. I have been on a severe roller coaster ride to say the least. I have never been sick due to this and am currently not. I belong to a group...  Read more

The Night I Snuck Out

In 2003, at age 32, I was diagnosed with Primary Biliary Cirrhosis. It wasn't until the summer of 2012, after a rocky separation from my partner, two children, and some test trials on the Plasma Apherrasis machine that I received my transplant. I had been living at the hospital, being made more comfortable and on my way out when I snuck out for the evening to see my mom and children that I got the call to head up to Edmonton. Life is starting to go back to normal - well as normal as life is after a transplant. I'm thankful to be here with my kids and to be out of the...  Read more

Living with liver disease

Its good to see something like this done because it is really the only way to get the message out there. In 2012 I began what I thought was my monthly period but it turned into 45 days of extremely heavy bleeding that wouldnt stop. I seen a doctor who gave me a prescription to stop the bleeding and it did but for only a very short time and then it started again. I felt very weak, fatigued, no appetite and could hardly lift my head off the pillow. Back to doctor and was asked to do blood work and within two hours I was called and told to get to emergency asap as my...  Read more

Sometimes Life seems Unfair

About 4 years ago I started having stomach troubles and after several tests and two years it was discovered I had NASH and was type two diabetic. This caused some confusion and depression. Then to top it all off my wife of 20 years decided to leave. I really felt like I had been shot and left to die. Only to find out that a lot of the confusion came from the high Ammonia levels. This was very scary as a couple of times I have no memory of and my son has told me what happened. Even though things seem to be under control I still worry they may happen again as the last time it

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live life, pass it on

I have read several stories here and come up with the same conclusion. We battle to live, we battle with every thing we have. Why not. I am 46 year old as of writing this story. Was diagnosed with Primary Sclerosing Cholangitis at the age of 27. One year after my fist daughter was born. Had my fist surgery, bile duct reconstruction, a few months after my second daughter was born. Life returned to normal. Started to run as a way to stay in shape. This lead to many running races from 5km to the full marathon. Then to triathalons. Loved it, made me forget for the most part...  Read more

Two Liver Transplants due to Primary Sclerosing Cholangitis (PSC)

I was diagnosed with Ulcerative Colitis (UC) when I was about 21 years old and Primary Sclerosing Cholangitis (PSC) less than a year later. I received my first liver transplant in February 2006 and my second liver transplant due to PSC recurrence in March 2012. I have experienced bacterial infections, bile duct strictures, blood transfusions, body and upper right quadrant pains, bone loss, chills, enlarged liver and spleen, elevated liver enzymes, fevers, fluid accumulation, gallstones, hepatic portal vein stricture, intestinal ulcers, jaundice, post transplant diabetes,...  Read more

Surviving the 48 week Victrelis Triple treatment (peg interferon Alfa-2b, ribiviron, boceprevir)

The mental/emotional side effects I experienced in no particular order include an inability to think clearly (brain fog, difficulty adding up a column of figures or do simple calculations, remember things), angry outbursts, becoming unjustifiably angry angry with family members, depression, (feeling like killing myself on a daily basis is several times a day) deep feelings of anxiety, an inability to sleep at night, while frequently falling asleep in the day & extreme fatigue. The Physical side effects in no particular order include joint & muscle pains, loss of...  Read more

My liver

Hello my name is Nicole, and a newspaper clip inspired me to look in further to things. I'm 26 years old and have a liver disease called primary sclerosing cholangitis. I' ve been waiting for about 2 years now for a transplant but have been put on it and taken off the list quite often. I' ve had pain for about 5 years now and everytime I went to the hospital they would tell me I pulled a muscle or have ulcers, then one day I turned completely yellow and went back to the hospital and asked if a pulled muscle causes jaundice and that's when they finally decided I wasn't just a...  Read more

Acute liver failure

I was drinking with my mates and when they left I started get server tooth ache. All night I couldn't sleep was up all night crying so I keep taking pain killers not realizing how much I toke the next day I woke up been sick every two seconds throwing up blood right then I knew something wasn't right so my boyfriend ring the hospital and explained what had happened. They told him just give her pain killer and put her to bed even know I toke overdoes. So my boyfriend’s mum toke me to the Ulster hospital and they told me I have a liver failure and might need get

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Diagnosed 2 years ago after having this disease for 40 years. It's odd, lung cancer, diabetes, obeseness are treated with no questions or complications. The specialist tells me I need to come up with 87K for my portion to Pharmacare. WTF over? I don't have the deductible nor can I come up with this cost. Seems they've put me out to pasture to just wait and die.  Read more

Gallbladder Surgery

This all started 5 years ago with having to have my gallbladder out. While in there the doctor saw something on my liver so he took a piece out and sent it for a biopsy. About a week later my family doctor called me and said that I need to be in his office ASAP no excuses that in itself scared the hell out of because my doctor has never done that before. When I got in the office the look on his face said it was not good. He drop the bomb you have cirrhosis of the liver. I sat there with my month open I could not believe what he just told me, all I could say was I don't

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Why I'm Running

I am turning 58 next week and I have stage 4 of hepatitis C that I contracted from a blood transfusion. I just ran behind my manual wheel chair in my first Army Run to support our heroes. I could barely make it up the hills and another runner stopped her race to push me in my wheel chair to the last km to the finish line...and let me cross it under my own steam. People along the route were clapping for us, patting us on the back, fire fighters gave us the thumbs up and army saluted us. I was proud but I'm not a hero. I ran for someone who was. Although I'm in stage 4 and in...  Read more

It just couldn't be any better

Hi, receiving a gift of life has to be the most beautiful thing that happened to me. After a year with the liver cirrhosis disease I’m really extremely thankful to my organ donor

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I have be diagnosed with PSC (scaring of the bile ducts) for about 12 years now. It all started one day when I became extremely itchy and my skin turned yellow. I went to the clinic and the doctor there was a young and well educated man who recognized the issue immediately. He sent me to the hospital and had me admitted. They ran multiple tests and found that I had a liver disease. I was assigned a specialist who is an extremely fine doctor and has cared for me the entire time. Other issues have developed as a result of the disease. I had 9 veins in my stomach break...  Read more


well being 60 years old I think I m pretty lucky. God save my health enough to be considered for surgery and make the transplant list I sure  i'd like to thank the personal from the Toronto TGH for all what they have been doing so far, but even after a year of being diagnosed and being the luckiest man having 2 extremely special person offering to be living donor my worries ain't about my own surgery but the donor's surgery especially ...........the risk involved.  Read more

Alive in me

I have so much energy, I feel like I am back in the world after a long absence After being diagnosed with hepatitis autoimmune disease in my matric year, at age 18, felt tired all the time and constantly cold. “I couldn’t go out or work, I had jaundice and blood clots were visible through the skin on my neck In autoimmune hepatitis, the liver becomes inflamed as a result of an attack by the immune system. Although the exact cause of the illness isn’t known, some other diseases, toxins and drugs may trigger it in susceptible people, especially women....  Read more


I woke up on the morning of my 44 birthday and felt a pain, It was my appendix and it had ruptured. Ouch I say ! I stayed in the hospital for a week and when I was let out I had to go and get check ups every week because I was on antibiotics for so long they wanted to make sure it was all ok. My blood work kept coming back as High liver numbers . On and On this went for 3 months. Finally I was sent to a specialist where they told me I had PBC. again ouch. My point to my story is the 3 months between. The doctors never stopped sending me for different test. They knew...  Read more


I wrote earlier about finding out that I had contracted Hep C, now I would like to share my treatment and recovery story. At the time I started treatment I was self employed and I was looking at some huge costs for the meds. I was able to get on the Murc Care program and the drug company helped me get cured. I read all I could about the treatment and I went into it with a positive attitude. I was lucky my genome/variety of Hep C was easily treated and I had good chances of success as well as only being on the treatment program for 6 months. Still in those 6 months there was...  Read more

just a follow up

This is just a follow up to some previous post. Finally got the call saying i'm officially on the liver waiting list .....just can't wait for the next most important call...yes i know it could be a long wait and it could come too late but it is still closer than over a year ago ... after all this expensive travelling is over i can start just giving to the foundation and volounter  Read more

just a follow up

this is just a follow up to some previous post i did ,,,i finally got the call saying i m officially on the liver waiting list .....just can t wait for the next most important call...yes i know it could be a long wait and it could come too late but it is still closer than over a year ago ... after all this expensive travelling get over with i can start just giving to the foundation and volounter  Read more

From Healthy Young Woman to Near Death in the Emergency Room!

I'm a young professional woman with a good job, great friends, awesome dogs and a nice life; I had loads of energy and was always upbeat and outgoing. Then in the winter of 2014 things drastically changed and I couldn't pinpoint why. I felt so tired all the time, my skin tone wasn't the same, I found breathing challenging, I was always nauseous, I just felt overall terrible most of the time and really not myself. Everything was so difficult to do like even just going to work or driving my car. I knew something was really wrong. Finally I went to my family Dr. and they took

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Journey to a marathon and conquer fatty liver disease

I was diagnosed with fatty liver at a very young age and because of it I was always constantly fatigued. In December 2012, with my poor eating habits I ended up in the Emergency Room of the Hospital. I made a goal then to get rid of fatty liver and to stay in shape. I made small goals at first to run about 2km non-stop, then two became 4, which became 10 really fast. I was able to run the Vancouver 2013 Sun Run nonstop. Long story short, I wanted to run farther and longer, so I did about 57 Grouse Grinds to lose some weight, then I challenged myself to run in a half...  Read more

Large Liver Cyst

I was feeling abdominal pain in the solar plexus region when I did floor exercises on my stomach. My doctor recommended an ultrasound which showed that I had a large cyst on my liver. I was scheduled to get it drained at the hospital and they removed 350 ml of fluid! I'm not sure what causes this but have found a diet with lots of fiber and drinking lots of water seems to alleviate the nausea I can develop. Wish I knew what causes the cysts.  Read more

My story

I Audrey had a liver transplant March 5 2014, I had alpha 1antitrypsin deficiency was sick for years. My girl friend Margaret stepped up and became a donor for me Without this gift I wouldn't be in recovery looking forward to tomorrow.  Read more

My life

I was recently diagnosed with Hep c, happen to be diagnosed on my little sisters birthday. 
I haven't had the perfect life, doing drugs, bad relationships. We'll in August 2013 my ex-boyfriend had done some tattoos on me after already using the needles on himself. I got extremely sick in the ending of October 2013 and was hospitalized for being so sick, my liver had swelled up and my blood had gotten extremely thick, the hospital in Brampton Ontario didn't do tests for hepatitis C. My life went downhill from there, on April 23 2014 I was diagnosed with

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jacquiez transplant

I Jacquie had a liver transplant in London Ontario October 3 2010...  Read more

The Long Road

Well it all began when I was 10. We were never too sure why it was iI got stomach aches all the time but it was worth checking out. Month of tests later I was diagnosed with Chronic liver disease and Auto immune Hepatitis C . At that age I wasn't still too sure what it was but I was still capable of playing sports. Which was all I really cared about at the time. As time went by I tended to get better and stronger through playing football. I had taken many camps and joined the best team. And me and my team had truly thought I was going somewhere with football. Now I add to...  Read more

Feeling Hopeless - don't know where to turn

Diagnosed over 10 years ago - Type 1A Hep C - stage 4 cirhosis. Just received medical records from a blood transfusion I received when I was 6 months old in Calgary AB. I have the unit numbers but have no idea who to contact for compensation so I can afford treatment. Even willing to do trial testing of new meds because do not have money for treatment. I have been waiting as long as possible before treatment - do not want to even try robaverin (??). Waiting for new meds that are already in the States but not in Canada yet. Now having hypertension and blood backing up -...  Read more

Back from the TGH

just a small positive update .........the 18 brought me hopes as over the next couple months i will be added to the list for live transplant ,making the decision to go with a liver transplant sure ain t easy i myself presently .i m learning things about liver transplant .. specially the donor part whether it will be a live donor or from a person who pass away mean so much ......and makes all the difference for the receiver of the liver if he dies or survive ... i can honestly say that if my liver was any good i would sign to give a part without even thinking twice  Read more

liver cyrosis

For a start i just don t want to hear about this blaming alcool for every one who show that liver disease my 2 sister show both fatty liver and they never even drink in there life . i was diagnose earlier in life with a fatty liver and the doctor mention scar liver that was when i was 30 years old all he mention back than was watch your drinking and salt not much else was done forward now 30 years later august 2013 i went in the ER hospital finally one doctor decided to believe i wasn t a heavy drinker weighting 272 and a belly full of water .... he gave me a...  Read more

Frustrating few years....

I was certainly pleased to find this website (from an article in the recent issue of Canadian Living magazine). I don't know where to begin with my story. Firstly, I have had ulcerative colitis for approximately 5 years. During this time after an endoscopy, it showed I had portal vein hypertension. Subsequently, I had 3 transjugular liver biopsies and they came back showing nothing, even though the initial diagnosis was cirrhosis of the liver. I had been having blood issues, and after a multitude of tests, I had to have a splenectomy as my spleen was enlarged and causing...  Read more

Autoimmune Hepatitis

Hi All - I am 48 and have been diagnosed with Autoimmune Hepatitis. I have never drank alchol or been obese. So I guess I am not classic. I do not have cholestrol problems. About 5 years ago my liver enzymes went a little wacky and climbed into the low 100's. My GP put it down to a fatty liver after an ultrasound but we monitored the enzymes every 3 mos. They continued to be all over the map. I asked for a referral to a specialist. I had a biopsy on March 2013 at McMaster in Hamilton ( it was not a big deal though it took me a few days to regain my energy levels ). The...  Read more

Thanks to my mom

In September of 2010 after a liver biopsy, I was sitting in a doctor's office with my 2 year old and 5 month old baby when I was told that I had Primary Billiary Cirrohsis. The only cure was eventually a transplant. A month later I had a catheter inserted  in my chest for treatment called Plasmapheresis. In November of 2010 after several weeks of treatment and no results, I had told the doctor to remove the catheter and try a different method. With my marriage ending in December of 2010 and having 3 children to support, I had to fight for life. By May of...  Read more

April 15,1972 - half liver amputation, motorcycle accident, Burlington,Ontario

I had half of my liver amputated because of internal injuries I suffered from a motorcycle accident. My ribs were split apart, my liver was wrapped in mesh and wired together. I have felt sensations and pain my whole life. Two years ago, I had a tough decision, I was thinking about flying to Burlington and letting the operating doctor open me up to see how my liver grew back. What stopped me was my 5 year old grandson and the thought that if I did not come home, he woukd be devastated. I was willing to pay back for the 40 years I lived, thanks to Joseph Brant Hospital. Hope...  Read more

Gallbladder and Liver Disease

I was told I have a stone in my Gallbladder, a small one, I don't know and trust the one whom reads these Ultrasounds and also my doctor.

I suffer a herniated oesophagus which is so painful and hard to eat or drink. I get the hiccups every time I eat supper, very annoying, I have a lot of medications I take daily and have been taking a lot since 1990, I am afraid to find out if I have a liver disease, I should!

I have been taking painkillers almost for 23 years, I think I only one time was clean of medicine and that was the year of 2004 and into 2005, was told my bone...
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toxic hepatitis

seven weeks on some meds and felt like hell the whole time, finally went to doc and turns out have toxic hepatitis. Some days fatigue so bad can't do anything, other days not so bad. Bloods are improving slowly.  Read more

Cirrhosis Stage 4

On the 17th of June 2013, if asked, I would have said I was a fairly healthy 63 yr old woman dealing with Type II diabeties. My sugar counts were creeping up a bit and I was just put on insulin (had only been on pills for the last 20 or so years, not bad I thought.) My family Dr. sent me to a GI because he didn't like the counts of some regular Blood work I had done. I go see him and do more blood work then ultrasound then CAT scan then MRI. Four months later on the 18 of June he said you have Stage 4 Cirrhosis. Non-reversible. He said I am non symptomatic. That is...  Read more

My new liver, a miracle of life

I was diagnosed with chronic autoimmune hepatitis in 1988 when I was 14 years old. 

 As a child I was on bedrest, took the pills my doctors prescribed, and learned about my disease at the Francis Liver Clinic at Toronto Western Hospital. I really managed well when I was young. I was able to competitively row, compete in high school running, play ice hockey and just act and live like a fairly normal teenager. 

Then I reached my 20s and graduated from the University of Victoria Kinesiology program. I was married at 26 years old and went back to school to become a...
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New diagnosed with Liver disease

I had been battling Crohn's Disease and a rare form of arthritis called ankylosing spondylitis for decades, when last November my new rheumatologist went through my medical history with a fine tooth comb. He noticed my liver enzymes were consistently elevated in all my blood tests which my GI had attributed to having Crohn's and Arthritis. Anyway, he sent me for an MRI and a couple of weeks later my GI informed me that I had Primary Sclerosing Cholangitis and may have had it for close to 10 years. I was devastated because I was dealing with two auto immune diseases plus...  Read more

PBC/AIH overlap

About 7 years ago I started experiencing a lot of strange symptoms including fatigue, mental fuzziness, change in bowel habits, heartburn etc. I continued to tell my doctor about these symptoms and it seemed that they were either brushed off as "aging" (I was in my mid/late 30's) or treated without any real investigation. My siblings had gall bladder issues and my maternal grandmother and cousin had both died of intestinal cancer and finally my doctor decided it was time for more investigation, including a colonoscopy .My gall bladder appeared to be fine but the...  Read more

My Hep C story

A year ago last May (2012) my doctor became concerned with my high blood pressure and asked if i have ever been tested for Hep. I informed her that no I hadn't, as it turns out I had Hep C2B. Not the most memorable day in my married life having to come home and tell my wife that I had infectious Hep C and she and both my boys needed to be tested. Thankfully they all tested negative, what a relief. So now treatment, I am self employed and my insurance didn't cover all the costs but Merk Care stepped in and is covering the $1000.00 every 2 weeks for the drug program. I can't...  Read more

Liver failure

My name is Jess and I am a 30 year old female. My story started early this year (2013). It started with flu like symptoms, which went on for a few weeks.

It wasn't until a family member was taken into hospital with pain in her abdomen and was told of possible issues with her liver that I decided to do some research to understand what was happening to her and I discovered I was experiencing some of those symptoms including fatigue, confusion and yellowing in skin and eyes. I went to see my Dr. and was told I had viral hepatitis and was sent to emergency for immediate blood...
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billary atresia

I'm Amira Hamisan,I'm 7 months old. I was born with billary atresia. My doctor told my mom that i need a liver transplant before i reach 1 year old. the cost will reach from 4 to 6 million pesos ($175,000). We can't afford the ammount for the transplant. I want to go to school with the other kids, play with them and learn other things. I want to learn how to read, write and cook with my mom. I want to live.  Read more

my story

My sister got sick and was hospitalized. They couldn't figure out what was wrong and took blood work because the only symptom she had was diabetes and was very tired. At the beginning they were not sure what they were looking for. Next thing she knew she was unable to care for herself, she lost a lot of weight until she was just skin and bones so she moved in with my parents. My mother took care of her the last three weeks of her life. Her legs started to be weak and my mother was overwhelmed, so we took our turns taking care of her and finally when we...  Read more

Fighting To Beat Fatty Liver Disease

My name is Belinda and this is my short story on my liver disease. Last year a lot happened to me, from dealing with a bad car accident that my mom, grandma, and I were in to having a hysterectomy. Then months later I found out in late summer/early fall that I was having problems with my liver. My liver enzymes were high then I was diagnosed with type 2 diabetes. I am not obese to say the least. I know I have to lose some extra pounds like any other Canadian out there that always tries to lose weight. For me I have trouble loosing weight cause of my metabolic disorder/PCOS...  Read more

Battle against BA

My daughter, Seanen Megan, has been diagnosed with biliary atresia. She got jaundice during the first week after birth and eventually it was gone. But a few days before she turned 2 months, I noticed that she was jaundiced again, her eyes were yellow, even the inside of her mouth was yellow. I immediately told her pediatrician about this. She required a bilirubin test and the result was high. We were referred to a pedia-hepatologist (we only have 1 pedia-hepa doctor in our country) which immediately told us that our daughter should undergo liver biopsy. The...  Read more

I'm Angry

I never asked for this. I never wanted this. I always thought I was going to die young, but not from some liver disease. I want to have kids, travel, retire. I want to experience everything this world has to offer, and not have to worry about a common cold landing me in the hospital, or being poked numerous times a month watching my LFT's rise. My Gastroenterologist told me NOT to get pregnant, and that I shouldn't get pregnant because it would be too dangerous for me and the fetus. This devastated me, and still does. I am not getting any younger, and I will never experience...  Read more

count dracula and his demons

Hi my name is Randy and I have cirrhosis caused by drugs at a young age. I ended up with hepatitis C.  Now that I'm 47 years old, the abuse I put my body through is taking its toll. My liver is almost done. I have bilirubin. Doctor tells me I am diabetic and most of all I was told I need a liver transplant. The only luck I have is that I'm still here .Take my advice, pain really does hurt  -- not only me but my family. NOW comes the wait for what's next - - so good luck and good bye.

I am writing this second part as I have now been told that I have liver...
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It's been quite a while since I last shared my journey with Primary Biliary Cirrhosis. A lot has happened since then! Since my last entry my bilirubin levels continued to increase to the point I was placed on the 'wait list' in early February. February was a very trying month, I thought I was suffering from a lung infection as I couldn't take a deep breath and my appetite disappeared. After a visit to my GP it turned out I was having an episode of ascites and the fluid in my abdomen was pressing up on my lungs thus not allowing me to breath properly. I had gained about 1...  Read more

We all need support!

I am a single Mom turning 58 this month. I was diagnosed 10 years ago with Hep C, I did treatment, but relapsed. I have 3rd stage cirrhosis now, really need this treatment to work. So, now I am trying the Victrellis,,, rough, rough, treatment, but it has to work!  Read more

Only in Canada Eh?

I have Hep C. Was diagnosed in a routine elevated liver enzyme test in 2007. I was shocked, Geno 1 2 mil viral load, (what ever that meant at the time) I had had My tonsils out at 17, had 2 very healthy babies, had old fashioned gall bladder surgery, routine dental work and gone for regular medical/blood work all my life. I started treatment right away as my liver was showing signs of cirrhosis and after a biopsy it was confirmed. I am not over weight, I do not drink, I exercise, eat right and have worked hard all my life. No sense in 2013 saying why me......but I can ask...  Read more


I was diagnosed with Hepatitis C and was informed it could be treated but was expensive with a variety of side effects. At the time I declined the treatment as I did not feel I would be able to run my business and was told that some people go through life without knowing they even have Hepatitis so I was not too concerned at the time. My liver biopsy also did not raise too much concern with my doctor. In 2009 I shut down my business so that I could take the treatment. At that time I wanted to take a holiday to Mexico as I still had to wait another 3 months to see the...  Read more

My Poor Sick Liver

I have cirrhosis of the liver. I was just recently diagnosed. I have not had a drink of alcohol for 17 years by choice. It did nothing for me and so I chose to not drink it. I noticed over the years that I have suffered more and more fatigue, depression, "foggy brain", and severe joint pain. I was diagnosed with hemochromatosis this past fall. My ferritin was 5,160. My biopsy showed that my liver was "blue" with iron. I have had endoscopic examinations and had three esophageal varices banded off on the first one. # 2 was ok and that was a relief. I have just had...  Read more

Teenager problems

Hello. My name is Sampson and I have recently been diagnosed with Hepatitis B. I contracted this by having unprotected sex with my boyfriend.  Hepatitis has changed my lifestyle completely. Everyone makes fun of me at school, but I know I'm not alone in this fight against it.  Read more

Cured in between treatments

Started treatments  in 1998,  completed 2, stopped 1/3 due to possible retina damage. About to start 3rd treatment 48 weeks but was emailed with the most amazing news I've ever heard. From 23,400,000 viral load to zero, with great thanks to the Jewish General Hospital in Montreal,PQ  and a special thanks to Doctor Hilzenrat and co-workers.  Read more

Get checked!

I don't know if I can fully write "my story" as I am still having a great deal of trouble accepting this death sentence. For others, it may not be a death sentence however, for me ... Anyone just learning about this "condition" will learn, that it is extremely important to see your doctor regularly and undergo any tests since this "condition" will show signs at a very late stage. I didn't do this partly because I thought I lived a relatively healthy lifestyle, ate properly, exercised regularly and could move mountains, and thought things were fine particularly since I...  Read more

My Hep C Journey

I was 20 years old when I was diagnosed with Hep C. As a teenager I struggled with alcohol and drug addiction. On a few occasions I used drugs intravenously. I got tested after my sister was diagnosed. She was the only person I ever shared needles with. I was shocked to find out I had the disease. It was 1999. I was 3 months clean and sober when I received my diagnosis. Back then treatment in my area was offered only to people who had elevated liver enzymes and for whom the disease had progressed. I was deemed too healthy for treatment and therefore had to learn to live...  Read more

Fighting AIH

In reading through the stories of others with AIH, I can't help but notice the similarity in first having flu like symptoms - I too started this way in late 2010. After bloodwork was done in early January of 2011,  I was told I suffered allergies and took several meds for a month. I was cured but as the year progressed the fatigue I experienced was unusual. The onset of my period only made things worse... Then in August  the same year I began to notice a nausea after every meal, extreme fatigue and yellowing of my skin and eyes, my urine was orange too!...  Read more

Auto HEP

It was five years ago now that I was diagnosed with Autoimmune Hepatitis. I was fine and then one day I started to feel like I had the flu coming on. As a typical woman I just keep going and didn't think it was bad enough to go to the doctor. My husband one night noticed that my eyes were yellow and in fact my whole body was yellow. I was soo itchy. He made me go to the emergency room. They knew it was my liver which frightened my family and doctors -  no one could tell me what was going on. I was sent home and an appointment was set with a liver specialist....  Read more

The pain won't go away

Hello, my name is Audrey. I am a 26 year old finishing my degree in education. I've always been the outgoing type of person doing a million things at the same time, but that all stopped in January 2010, when I found out I had Focal nodular hyperplasia. At first the doctors told me it wasn't a big thing, that I could live my entire life normally without worrying about a thing. But I kept telling them that the pain was unbearable. At first, they didn't believe me, as if, taking meds and spending my days in the hospital was my idea of fun. So I went back to the hospital,...  Read more

Autoimmune Hepatitis - Accepting that I am different

It was a cold and snowy day in November. I remember because the frosty white ground seemed to make my eyes seem that much more yellow. The kids on the school bus stared at me and told me over and over that my skin looked yellow too. Being 12, I did not have the knowledge to even hypothesize what was happening to my body. I went home that day and told my parents. There were a lot of phone calls that evening, but no one seemed to be worried- so I wasn’t either. Now looking back, I knew my parents were concerned but just trying to protect me with their smiles and...  Read more


Well, I've had all the testing completed and found out I'm a pretty healthy individual other than my liver. In the midst of all the testing my MELD score dropped and it was determined that I wasn't ready for the 'waiting list' yet. Since then my MELD has increased again and I'm currently waiting for my next appointment with my specialist to determine if I will make the list now. In the meantime I'm enjoying time with my family and trying to live life as normal as possible.  Read more


Over 20 years ago I was feeling a bit tired and since my husband had just been diagnosed with high-cholesterol, I thought I'd better have my blood checked too. After a few more blood tests and a meeting with a specialist I was diagnosed with Primary Biliary Cirrhosis (PBC). Over the past 20 years this disease has progressed slowly but steadily. At first I wasn't on any medication and seeing my hepatology team once a year, then in 1997 I started medication and the doctors appointments and testing became more frequent. I was happily experiencing life's challenges and...  Read more

Living with Autoimmune Hepatitis.

I am a 37 year old mother and business owner.  When I was 32 years old, I became very ill with severe flu-like symptoms, dizziness, vomiting, dark urine, white spots in my vision and jaundice . After weeks of doctor visits and hospital trips, no one seemed to know what was wrong. I was a stay-at-home Mom to my 2 year old son at the time and my symptoms became unmanageble and I was fearful of caring for my son as it was so bad at times I would lose conciousness. I ended up in the ER again and this time I was admitted. I was 2 months into a flare up at this point...  Read more

Survivor of suicide attempt .. to find out I have AIH

May 2005 I had my gall bladder removed ... doc report says he was "surprised at how large my liver was" . My family doc asked if I drank or did drugs. .I said no .. just the occasional glass of wine or drink at special occasions. He dismissed the enlarged liver and did no testing. My Mom got sick with lung cancer and was diagnosed in Sept. 2006. Feeling unwell myself and not understanding what was happening to me,  I kept returning to the doc who put me on anti-depressants because of all the outside stress. Nov 8, 2006 I tried to commit suicide and my...  Read more

Learning to live and die with hepatitis C?

Some 30 years ago I was diagnosed with hep c. My first reaction was, so what? At that time hep c was not as known as it is today. They didn't have drugs like they do now. Owing to the fact that I was still abusing drugs and alcohol I didn't much care. Now today having a sixteen year old daughter and a wife of 26 years, who is twenty years younger than me, I do care and want to cure myself of this virus. I have been on pegatron for 47 weeks through no avail. Now they have a new drug out, but because my red and white cells, platelets are low I am not suitable for this. Can...  Read more


It was May 2010, I was sitting at my desk at work when I started to get dizzy and fade in and out. I was thinking maybe I just needed a break from my computer. I looked down and took a few breaths and when I opened my eyes, I was staring at my feet which were completely swollen, I looked at my hands and they were also swollen. Right at that moment I knew something was not right. I headed to a walk-in clinic since at the time I didn't have a doctor. The doctor at the clinic wanted to run blood work -- I'm good with that. He told me he wasn't sure why I was swollen...  Read more

14 years of LIVER

Just over 14 years ago, I woke up BRIGHT yellow (did I mention i was 10) After almost 4 months and traveling to TORONTO We found out that I had AUTO IMMUNE HEP. Different then all my friends I returned to school. Much bigger then they all last seen me, I was now a subject to BULLYING. (unfair.) The only child in my area with such a disease I was the outcast. (once the incast) Years go on, high school was no different. Still subject to massive bullying and very low self esteem. (No matter what tho, My mom and Dad always made sure I felt loved, safe and special. and NEVER...  Read more

Auto-Immune Hepatitis/Cirrhosis/Liver failure end stage

Hi, I am a 54 year old woman who discovered 3.5 years ago that I had AIH/Cirrhosis/liver failure. I am a Registered Nurse, and had just recovered from removal of my right kidney due to cancer in 2006. At that time I had terrible heartburn and the GP had ordered blood tests. The tests came back with elevated liver enzymes so I was immediately booked for an ultrasound 3 days later. That is when they found the tumor. Had my surgery and it took about 6 months before I could even return to work. So life went on and I went back to work feeling very good. About a year and a bit...  Read more

Walking with my head up high

I am not a writer. I never spoke about Hep C until I realized that I didn't have to be alone anymore. When I found out I had Hep C it was after giving blood to the Red Cross. I was at work and my wife called me and told me that she just opened a letter mentioning I had it. Not just because of that but not long after we whre getting a divorce.  She left me for another man, my world had just crumbled and for some reason I ended up forgetting about it until I met a girl who liked to live on the edge -- drugs, alcohol, sex.  Out of that relationship came a boy -- that...  Read more

25 years and now cured

In 1986 following a bad motorcycle accident I had surgery. Little did I know the blood transfusion meant to save my life carried Hep-C. I found out in 2002 after the postman knocked on my door with a registered letter from HEMA Quebec (Red Cross). The donor had died and they contacted those that had received his blood. Through some research HEMA Quebec knew of the tainted blood when they gave it to me. I took this news very seriously and immediately ensured a healthy lifestyle. My Hepatologist monitored the disease through blood tests every 3 months. When my enzymes...  Read more

Hep C from Rhogam

My name is Mary Ann and I must get this story out to more women. I received shots of Rhogam with all 3 of my children in the 80's. Three years ago a doctor tested my blood because I was complaining of a stomach infection. He sent me for a simple blood test that showed I was infected with Hep C. I have no tattoos nor have I ever been a drug user. I was on the interferon medication and my doctor took me off of it because it stopped working. I then asked for a liver biopsy so I could see how my liver was. I just found out that I am in Stage 4 of the disease with cirrhosis....  Read more

My Story

I learned in 2002 that I had somehow acquired Hep C. Sadly or not, I had been sober over 15 yrs and certainly did not know anything about my liver being silently damaged. In 2004, biopsy showed that I was already at stage3/4. Started treatment in Sept. Didn't have too much trouble with the sides. However, in August 2005, at the completion of treatment - there was the dragon, laughing at us. For the next 3-1/2 yrs, I researched, joined online groups and just about anything that I could find. However, just with the knowledge that I had been so close to full stage 4...  Read more

A Monster in the Basement of my House

Someone once described living with Hepatitis C like living with a monster in your basement. Sometimes it sleeps soundly without a word; sometimes it roars and complains and brings about fever, itching, brain fog, headaches, muscle cramps,insomnia, chronic diarrhea,ascites, fatigue and depression. I've experienced all of this, and many of you have as well. To make things worse for us, the support for Hep C patients lacks the solidarity of the AIDS network, or the warmth we give to those suffering from Breast Cancer. Hep C is a nasty little disease that one is less likely to...  Read more

Living with HEP C

I contracted HEP C Through a blood transfusion in 1976. I had symptons of HEP C starting in early 1980's but was not diagnosed until 2009 when I complained to my doctor about leg cramps and itching. I did know my platelets were low but not why. I also did not know that my liver enzymes had been elevated since 2004. I was concerned about allergies that were getting worse and did research on the internet. I talked to an owner of a health food store about allergies and he informed me that allergies can be due to a liver that is compromised. I went home and looked that up...  Read more

How Advil almost wrecked my life.

Six months ago, an ultrasound found my fatty liver. A blood test confirmed it. I went for another blood test last week and although I'd gained fourteen pounds in six months, my fatty liver was gone. What caused the dramatic improvement from 66 to 38 in blood enzymes was quitting Advil. I had been taking it to six a day for years. I should only have been doing that for six days. I had abused it. My gastroenterologist when he saw I had gained so much weight, told me I was going the wrong way. But the weight was not on my liver. It was not even fat. The medical establishment...  Read more

FATTY liver, FATTY me.....

I recently went in to the doctors for a routine physical and during this they found that I had 4 tumors growing on my liver. I was admitted to the hospital and a ton of tests were preformed, the tumors ended up being begnin as well as inopreable. But what shocked me was the diagnoses of "fatty liver" and the fact that I have 50% liver function. I am 32 and have been a size 16 for almost 20 years.I have 2 little boys who I stay home with during the day and then I work night shift. So i am active, and thats why I was shocked to learn that my liver diease "cure" is to lose 4...  Read more

AIH (auto-immune hepatitis)

Shortly after Easter this year (2011) I had stomach flu, so I stayed home from work. The next day, feeling better, I returned to work. Upon arrival a co-worker of mine stated that I didn't look too well, and my response was that I was unwell yesterday, so it might be something related to that. Later on in the day my co-worker said again that I looked unwell, so I went to the bathroom and looked in the mirror, and I was yellow... like LEMON YELLOW... my skin, my eyes, everything was yellow. I phoned my doctor and they booked me an emergency appointment, and they sent me for...  Read more

Hep C And Liver Disease

Hello I would like to begin with the fact that I was diagnosed with Hep C in 1996.  I am really unsure how I contracted the Hep C. The actual liver diagnosis came I believe around 2003-04. I have had prolonged bouts of severe leg cramping that at times were so bad that I could not stand up or straighten my legs out for a few moments and sometimes have had to lay on the floor & cry.  This sounds kind of crazy for a man to admit this but it is true very sad to say. I have also had severe back pain & when I went to the emergency ward and sat there in agony...  Read more

My journey with HEP C

It all began witht ehbirth of my son 34.5 years ago, when I had a blood transfusion due to placenta previa. I never understand why I unexplained nosebleeds, an increase in allergy sysptons and nothing helped. Sensivities to certain drugs didn't make sense, vision changes, insomnia and the list goes on. In the fall of 2009 I compalined of leg cramps to my doctor and she sent me for blood tests. She just being new told me about my low platelets. That's when I started, doing research on my computer about allergies and low platelets. I had been told by a manager of a health...  Read more