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Shared Liver Function Stories – Rita’s rebirth after hepatitis

How do you realise that the liver is not working?

What are the Symptoms?

Jaundice makes the skin and whites of the eyes yellow. Ascites can cause swelling of the abdomen. Hepatic encephalopathy can cause confusion or drowsiness. Before getting a Liver checkup, most people have general symptoms, such as fatigue, weakness, nausea and loss of appetite.

“I would get out of bed just to put something in my stomach, often by force, because I had no appetite. I lay down and slept, slept, slept…”

The story of Rita.

Sixty-nine years old with a past as an elementary school teacher, who, thanks to new-generation drugs, managed to defeat hepatitis C, which was silently knocking out her liver and her life. “I was going through an extremely difficult period; I had just lost my husband – Rita tells us after the check-up at the Hepatitis Center -. Of course, there was a psychological load due to mourning, but at the same time, I felt a constant physical tiredness that was gradually getting worse.

During the day, I couldn’t do anything but sleep.

I would get out of bed only to put something in my stomach, often by force, because my appetite wasn’t there. I lay down and slept, slept, slept…”. There was something physical, so the doctor prescribed Liver exam.

Forward

“I remember they called me directly from the laboratory without waiting for me to collect the report. The transaminases (editor’s note: the enzymes that indicate liver function) were skyrocketing.” The values were completely off. The cause? Hepatitis C had already led to a state of Cirrhosis. The Disease seemed to have been going on for many years, and the liver was in very difficult conditions.

After being followed in another centre where it was impossible to undertake any therapy, Rita turned to “NA” on the advice of an acquaintance. “We’re talking about a few years ago, there weren’t the powerful drugs there are now, but in any case, on the advice of the doctors, I started a treatment based on “Int” and “RIV” after having an exam.

Are you Feeling Better?

I started to feel better, even if the side effects also led to periods of suspension of the treatment. After a few months, however, the tiredness returned, and my movements were unstable, and then there was a very annoying itch. So, in mutual agreement with the specialists, we decided to wait for the arrival of these new anti-retroviral drugs, which seemed very promising.

I knew that due to the cost of the therapy, they would only be given to the most severe cases. Mine was judged as such by the ethics committee that examined my case.” From there, his story, which had worsened due to the suspension of therapy, took place.

And I will never Forget.

“I will never forget that white bottle with the pills inside that was given to me for the first time in the hospital. I knew how important it could be for me.” After two weeks of therapy with the new drug associated with “rib”, control tests ascertain that the viral load in the blood is no longer detectable. “I felt much better. I completed the course of therapy for the expected months.

Treatment Time

“So on July 8th, two years ago, the treatment was completed, and the Liver reports certified that the virus was completely eradicated. “It became the date of my rebirth as if I had come to light for the second time. With the illness behind me, I found interest in what my passions were. Of course, I always feel empty, missing my husband, even though my daughter gives me much strength.

At the same time, however, I rediscovered the happiness hidden in those daily gestures that are often taken for granted. This morning, for example, I enjoyed the sunrise from the windows of my house, with the sun gradually filling the Grigna mountains with colour.

And I appreciate it more now.

A unique spectacle that I can appreciate today thanks to the progress made by Testing and medical research. Luckily, it exists. Fortunately, there are high-level centres such as the Hepatitis Center. Here, I found competence and a human approach: it was decision”e.”

• Story of Edward

I joined the US Army at age 18 and contracted Hepatitis C while serving as a medic.

I joined the US Army as a combat medic; my job was to work in a US Army burn hospital that took care of napalm burn victims. It was a converted 500-man World War II barracks, and you could hear the men screaming in pain from 3/4 of a mile away. The smell was so bad that we had to cover our faces with multiple layers of gauze to mask the smell.

My job was to debride or peel off the scabs.

I did my duty for these burn victims. I would befriend these guys only to have them expire a week later.

Then I went to Germany, where I worked on the motorway rescue team; the accidents were so horrible that we didn’t even carry stretchers in our ambulances, only body bags. On a particularly hot summer night, we were called to Patrick Henry Village, a US military installation, where there was a crowd of people gathered around; in the crowd, there were three small children aged 6, 7, and 8 mangled in bicycles.

A drunk driver had mowed down these kids and left. A blood test revealed a history of chronic drinking. We loaded these children into the ambulance and took them back to the hospital. Later that night, being short-staffed, I was told to go to the morgue and show these children to the parents there. At another accident scene, we came to a head-on collision, and the driver of one vehicle had an open chest wound. When I bent over in the car, I was covered in blood.

Age 20

Two weeks later, I turned yellow and spent a week in the hospital. By the time I was 20, I had witnessed over 3,200 violent deaths. I left the Army in 1976, came home, met my wife, and had a great time together; we walked, cycled, and thoroughly enjoyed the Lakelands. We had children and lived life to the fullest.

2002, I started losing weight and felt strange; I had severe pain in my right side, and I kept thinking it was something serious. I travelled to doctors all over the state to find the reason for this pain. I kept telling myself it was acid reflux, and I took so many acid blockers that it eroded my stomach lining.

My wife was not happy with the local doctors.

She took me to Dartmouth Hospital, where after 5 minutes, I was told from a test that I had severe liver problems due to a Hepatitis C liver biopsy and was told I was borderline. I know the virus had been damaging my liver for 30 years?

Age 30

2003 My doctor gave me two years to live. My options included dying or taking “Inter” and “Reb” to kill the virus in my liver. I should have opted for the two years of life. I spent a whole year in bed, so badcouldn’tn’t get out. Every Saturday night, I had to inject myself with interferon and take 6 pills every day; it hurt so much that I lost my hair, my teeth fell out, and I became anaemic.

My legs turned black from the injections.

This went on for 48 weeks. Every Friday, my wife needed to drive me to Dartmouth Hospital to have my checked; one week, my white cells were messed up, and the next week, my red cells were messed up, so I would be anaemic. The medicine caused me to develop kidney stones, gallstones, and Wilson’s Disease.

2004, I continued to have liver problems, woke up groggy and disoriented, and lost my short-term memory.

2005, I started having severe pain in my back and right side, hoping it was my liver healing.

2006 Problem digestion of food and constant liver pain.

2007 Problem digestion of food and constant liver pain, dizziness and fatigue.

2008: Problems with the digestion of food and constant liver pain, dizziness, and fatigue.

2009. Problems with digestion of food and constant liver pain, dizziness, and fatigue.

Finally, To this day.

I have constant nightmares of the burn victims and children in the accident. I have built a site to help me repair and monitor my health through liver function testing, but no one understands what I have been through or how I suffer.

• Story of Valerie

My name is Valerie Green; I was diagnosed with chronic hepatitis C genotype 2 in August 2015 at the age of 56 after feeling unwell for the past 8 years. Never in my wildest dreams did the idea of having Hepatitis C cross my mind.

Doctors estimated I had the virus for 20 years or more due to a blood transfusion in 198I. I’m still waiting for Medicaid to approve Sovaldi, the drug that will treat me. Medicaid denied me three times, so after much frustration, I started fighting and secured 90 grant funds, but my insurance still refuses to pay the remaining co-pay to get the meds they need. My fight for a cure continues.

Having the diagnosis made me feel better.

Because at least I was given a legitimate reason behind my suffering. Chronic hepatitis C is an infection that slowly damages the liver. The stress of worry was only getting worse, but “Sov” has about a 98% cure rate when taken with other medications. If Medicaid pays the co-pay, we won’t have to worry about it worsening. The “Sov” acquisition will dissolve some of my stress.

Stress and Disease Spreading from Liver Neglect I didn’t tell my friends or colleagues because there was no reason for them to know. Simply put, a Hep C diagnosis carries a lot of social stigma (just like AIDS). Ostracisation and discrimination are very real possibilities when disclosures are made. People see Hep C as a drug disease, and when someone says they have it, they automatically think “junk”e.” I would also like to say that not everyone with Hep C got it from medications thatwasn’tn’t willing to subject myself to; therefore, disclosure was based on the need to know. While hepatitis C infection may start silently

Untreated hepatitis C comes out roaring.

I have and will continue to develop symptoms along the way, including extreme fatigue, insomnia, anxiety, fever, nausea, vomiting, stomach pain, and joint and muscle pain, which I battle daily. These annoying symptoms have seriously affected my quality of life; hepatitis doesn’t stop there. If left untreated, it will progress and cause more serious and potentially fatal liver disease. Get regular Liver exams to check your health.

As of now, I am not treated. My hepatitis C could spread, affecting others, including my loved ones. Hepatitis C should not hinder you from living a full, healthy life. People with HCV should not wait until they are very sick to access treatment drugs. I now have and will continue to support Hep C funding and testing mandates!

• Story of William

Having been addicted to drugs and alcohol for 20 years, by 2001, I had been clean for 13 years and felt pretty good about myself. I had a wonderful family and had recently moved to Durham, NC, for a new job.

After complaining of constant fatigue, I visited a new doctor for a physical exam. The results showed that I had hepatitis C. I was told there was no cure at that time, but there were treatments, and I was referred to a gastroenterologist who, in turn, advised me on a study program at Duke Hospital. I started the program in 2002, and over the next 5 years, I participated in 12 studies.

Medicated to the Max

I was treated with 4 different combinations of medicines with the common denominator “inter” and “rib”. I participated in several psychological studies to determine whether depression had arisen. During this time, I continued to work, adopted two children and tried to maintain a positive attitude. I was supported by my wife, four children and close friends.

I have spoken to several support groups about my experience, strength and hope, trying to lift the spirits of those who feel like me. And I was still tired and hoping for a cure. Most of the time, I didn’t think about my virus. But I was enjoying life and doing what I could to help others.

I stopped treatments in 2007 and was waiting for one that worked for me. I was selected to join the American Liver Function TeFoundation’s National Patient Advisory Committee in November 2014. That same year, in December, I was recommended “Har” and “rib”, which I started in March 2015. As of this writing, Thanksgiving 2015, the Hepatitis C Virus is undetected in my body. I am cautiously optimistic that within 3 months, I will recover from the virus. And I look forward to continuing to help others go through what I went through.

• Story of Jim

Autoimmune 

When I started my company, Deep River Snacks, I had two goals: make a living to support my family and find a way to contribute to my community. Giving back has always been part of our philosophy, and about 10 years ago, we started including messages in our packages about important nonprofit causes to our employees.

But in 2010, when my son Meyer was 6 years old, we discovered that our little one was seriously ill. She had had nosebleeds, a tender belly and other symptoms. For months, we continued to take him to doctors for a whole battery of Liver exams and others. I was at an airport about to fly home when my wife called me and told me the diagnosis. Meyer had autoimmune liver disease. I had no idea about liver disease.

No Ideas

I had no idea what that meant, and some days, it feels like it’s still sinking in. I slowly educated myself on this, with much support from ALF. And I realised it was time to get serious about what I could personally do to tell the story of liver disease, raise money, and figure out how to save our son.

We started the Give A Chip campaign to donate a portion of sales to ALF and potentially reach more people with information about liver disease. Educating people about liver disease and advocating for ALF is one way we live our motto: Because we give a chip. The Give a Chip campaign educates the public about liver disease while providing people with a way to support research.

Some people are just dealt a bad hand in life; as a human being, you must be out there to help. You have to give a chip. I love getting emails from people nationwide who read our packaging and contact us. Some are facing the same medical challenge.

Support everywhere

I recently heard from the father of a son who has saMeyer’sr’s Disease, and thman’sn’s other son was able to have a live liver transplant. It was incredibly moving. Meyer loves dragons, so he has his own ALF Walk team called Meyer’s Dragons. They turn out every year to help raise money. Friends, family, colleagues, neighbours. They all walk.

Knowing that you are not alone makes such a difference, so we do everything possible to work with ALF to raise our voices and be there for others. You have to try to give more than you get.

Story of Jason

This story is about my husband with alcohol-related liver cirrhosis.

Don’tn’t know when my husband developed the first stage of liver disease.

Jason started having severe fatigue about 3 years ago. Our family thought his tiredness was due to his physical work and his struggle to sleep. We have been married for 15 years and dating for 2 years.

He started drinking daily about 10 years ago despite my requests to stop. I drank occasionally, but I could stop for several years. He later started going to a doctor who gave him about 90 Vicodin pills a month. And he also started taking my pills. I have scleroderma and bulging discs. He started taking all his pills and mine, too. I told his doctor that he was taking my pills and also drinking. And I had had enough and threatened him that I was moving out.

Time to Stop

He cut down on his drinking but thwasn’tn’t enough for me. I started throwing his alcohol down the sink. His doctor continued to give him Vicodin. This angered the family. He had terrible withdrawals and would fall. And he even broke the shower door.

I asked the doctor to stop the pills. With family intervention, he stopped alcohol and Vic. He was later diagnosed with liver cirrhosis about a year ago. I finally convinced him to seek another doctor when his doctor did more tests to find him healthy. For 10 years, he saw his primary care doctor. He went to the doctor every month. That’s 12 or more times a year.

His primary care doctor never treated his liver disease, nor did he ever receive an actual annual Profile exam.

Finally Free

When we finally went to a new primary care doctor, he had stage 3 liver disease and hepatic encephalopathy. And he had stopped having tests as his condition was terminal.

I am now both its caretaker and primary breadwinner despite my disability.

Now I feel guilty, and depressed I’m always positive when talking to him, but I must treat him like a child. And I have to drive everywhere, physically driving it around the house. He was the head of the family. Now I have to make all the decisions because I can’t concentrate and have no real memory.

I regret drinking and not pushing harder for him to see a new doctor.