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Shared Liver Function Stories: Rita’s new life after hepatitis

How do you know when your liver isn’t working?
What are the signs?

The skin and whites of the eyes turn yellow when you have jaundice. Ascites can make the belly enlarge. Hepatic encephalopathy can make you sleepy or confused. Most people have nonspecific symptoms like tiredness, weakness, nausea, and loss of appetite before they receive a liver checkup.

“I would get out of bed just to eat something, often by force, because I didn’t want to eat.” I lay down and slept and slept and slept.

The narrative about Rita.

She was 69 years old and had been an elementary school teacher in the past. She was able to beat hepatitis C, which was slowly killing her liver and her life, owing to new treatments. “I was going through a very hard time; I had just lost my husband,” Rita tells us following the check-up at the Hepatitis Center. There was a mental burden from sorrow, but I also felt physically fatigued all the time, and it was becoming worse.

I couldn’t do anything during the day except sleep.

I would get out of bed just to eat, usually against my will, because I wasn’t hungry. I lay down and slept, slept, slept… The doctor ordered a liver exam since there was something wrong with the body.

“I remember they called me right from the lab instead of waiting for me to get the report.” The transaminases (the enzymes that show how well the liver is working) were going through the roof. The numbers were entirely wrong. What happened? Hepatitis C had already caused cirrhosis. The disease had been going on for a long time, and the liver was in very bad shape.

Rita went to “NA” after being followed in another center where she couldn’t get any therapy. An acquaintance told her to go there. “We’re talking about a few years ago, when there weren’t as many strong pharmaceuticals as there are now. But anyhow, following an assessment, I started a therapy based on “Int” and “RIV” on the suggestion of the doctors.

Are you feeling better?

Even though the negative effects made me stop treatment for a while, I started to feel better. But after a few months, the weariness came back, my movements were unsteady, and I had a really unpleasant itch. So, after talking with the experts, we all agreed to wait for the new anti-retroviral treatments to come out because they looked quite promising.

I knew that the therapy would only be provided to the worst cases because it was so expensive. The ethics commission that looked at my case said mine was like that. After that, his story, which got worse because therapy stopped, happened.
And I shall never forget.

“I’ll always remember the white container with the tablets inside that I got for the first time in the hospital. I realized how crucial it may be for me. After two weeks of therapy with the new medicine linked to “rib,” control tests show that the viral load in the blood is no longer detectable. “I felt a lot better.” I finished the therapeutic course for the planned number of months.

Time for Treatment

“So, two years ago on July 8th, the therapy was finished, and the Liver tests confirmed that the virus was gone for good. “It was if I had been born again on that day. Now that I was better, I was interested in what my passions were. I always feel empty because I miss my husband, even though my daughter gives me a lot of strength.

But at the same time, I found the enjoyment that was concealed in those little things we do every day that we don’t think about. For instance, this morning I saw the sun rise from my windows, as the Grigna mountains slowly filled with color.

And I like it more now.

A one-of-a-kind show that I may enjoy today because of the work that Testing and medical research have done. Thank goodness it exists. The Hepatitis Center is one of the best places to go for help. I found competence and a human touch here: it was decision “e.”

Edward’s Story

When I was 18, I joined the US Army and got Hepatitis C while working as a medic.

I joined the US Army as a combat medic and worked in a US Army burn center that treated people who had been burned by napalm. It was a former World War II barracks that could hold 500 troops, and you could hear the men screaming in anguish from three-quarters of a mile away. We had to wrap our faces with several layers of gauze to hide the stench because it was so awful.
My task was to take off the scabs or debride them.

I did what I had to do for these people who were burned. I would befriend these guys, but they would die a week later.

Then I traveled to Germany and worked on the motorway rescue squad. The accidents were so bad that we only had body bags in our ambulances, not stretchers. It was a very hot summer night when we were summoned to Patrick Henry Village, a US military base. There were a lot of people there, and three small children, ages 6, 7, and 8, were hurt in bicycles.

A drunk driver had driven over these kids and then gone. A blood test showed that the person had been drinking heavily for a long time. We put these kids in the ambulance and took them back to the hospital. Later that night, I was told to go to the morgue and show these kids to their parents because there weren’t enough people on duty. We came upon a head-on collision at another accident site, and one of the drivers had an open chest wound. I was covered in blood when I bent over in the car.

20 years old

I turned yellow two weeks later and spent a week in the hospital. I had seen more than 3,200 violent deaths by the time I turned 20. I left the Army in 1976, came home, met my wife, and we had a lovely life together. We walked, rode bikes, and loved the Lakelands. We had kids and made the most of our lives.

I started losing weight in 2002 and felt weird. I had a lot of pain in my right side and was worrying it was something terrible. I went to doctors all across the state to figure out what was causing this agony. I continued convincing myself it was acid reflux, and I took so many acid blockers that they hurt my stomach lining.
The doctors in the area didn’t make my wife pleased.

She rushed me to Dartmouth Hospital, where a test showed I had serious liver abnormalities from a Hepatitis C liver biopsy and said I was on the edge. I know that the virus has been hurting my liver for 30 years.

30 years old

My doctor told me I will die in 2003. I could either die or take “Inter” and “Reb” to destroy the virus in my liver. I should have chosen the two years of life. I was in bed for a whole year because I was so sick that I couldn’t get up. I had to give myself interferon shots every Saturday night and take six medications every day. It hurt so severely that I lost my hair, my teeth fell out, and I became anemic.
The shots made my legs turn black.

This lasted for 48 weeks. My wife had to drive me to Dartmouth Hospital every Friday to get checked out. One week, my white cells were screwed up, and the next week, my red cells were messed up, which made me anemic. The drug gave me Wilson’s Disease, kidney stones, and gallstones.

In 2004, I still had liver problems, woke up feeling drowsy and confused, and forgot things I had just learned.

In 2005, I began to have terrible discomfort in my back and right side. I hoped it was my liver recovering.

2006: Trouble digesting food and pain in the liver all the time.

Problems with digesting meals and persistent liver pain, dizziness, and tiredness in 2007.

In 2008, I had trouble digesting meals and was always in pain in my liver, dizzy, and tired.

2009. Problems with digesting meals and persistent pain in the liver, dizziness, and tiredness.
In the end, till this day.

I have nightmares all the time about the kids and burn victims in the disaster. I made a website to help me fix and keep an eye on my health by testing my liver function, but no one understands what I’ve been through or how much pain I’m in.

The story of Valerie

I am Valerie Green, and I was diagnosed with chronic hepatitis C genotype 2 in August 2015, when I was 56 years old. I had been feeling sick for the preceding eight years. I never thought I would ever have Hepatitis C.

Doctors thought I had the virus for 20 years or more because I got a blood transfusion in 198I. I’m still waiting for Medicaid to say yes to Sovaldi, the drug that will help me. Medicaid turned me down three times, so I got angry and fought for 90 grant monies. However, my insurance still won’t pay the rest of the co-pay for the medications kids require. I am still fighting for a cure.

The diagnosis made me feel better.

At least I had a good purpose for my pain. Chronic hepatitis C is an illness that affects the liver over time. The tension of worry was only getting worse, but “Sov” works roughly 98% of the time when used with additional drugs. We won’t have to worry about things getting worse if Medicaid pays the co-pay. The “Sov” purchase will help me relax.

Stress and disease spreading because I didn’t take care of my liver. I didn’t notify my friends or coworkers because they didn’t need to know. In short, having Hep C (like having AIDS) carries a lot of societal shame. When people talk about their problems, they could be shunned or treated unfairly. People think of Hep C as a drug sickness, and when someone says they have it, they quickly think “junk.” I also want to clarify that not everyone with Hep C got it from meds that they weren’t willing to take, so I only told people who needed to know. Hepatitis C infection might start without any symptoms.

Hepatitis C that isn’t treated comes out with a bang.

Along the road, I have and will continue to acquire symptoms like excessive exhaustion, insomnia, anxiety, fever, nausea, vomiting, stomach pain, and joint and muscle pain, which I fight every day. These irritating symptoms have made my life much worse; hepatitis doesn’t end there. If you don’t treat it, it will get worse and cause liver damage that could be fatal. Get regular liver tests to assess your health.

I am not getting treatment right now. My hepatitis C could spread to other people, even those I care about. You should not let hepatitis C stop you from living a full, healthy life. People with HCV shouldn’t wait until they’re severely unwell to get medicine. I now support and will continue to support funding and testing requirements for Hep C!

The Story of William

I had been sober for 13 years by 2001, and I felt pretty good about myself. I had been addicted to drugs and alcohol for 20 years. I had a great family and had just moved to Durham, North Carolina, for a new career.

I went to a new doctor for a physical exam after complaining about being tired all the time. The tests showed that I had hepatitis C. At the time, I was informed there was no cure, but there were treatments. I was then sent to a gastroenterologist, who told me about a study program at Duke Hospital. I began the program in 2002 and took part in 12 studies over the next five years.

Medicated to the Max

I was given four different combinations of drugs that all had the words “inter” and “rib” in them. I took part in a number of psychological studies to see if I was depressed. I still working, adopted two kids, and tried to stay cheerful during this time. My wife, four kids, and close friends were there for me.

I’ve talked to a few support groups about my experience, strength, and hope in an effort to elevate the spirits of those who feel the same way. And I was still fatigued and hoping for a way to get better. I didn’t think about my infection most of the time. But I was happy with my life and doing what I could to help other people.

In 2007, I stopped getting treatment and was looking for one that worked for me. In November 2014, I was chosen to be a member of the American Liver Function Foundation’s National Patient Advisory Committee. In December of that same year, I was told to read “Har” and “rib,” which I started in March 2015. As of Thanksgiving 2015, the Hepatitis C Virus is not in my body. I am cautiously hopeful that I will get better from the infection in three months. And I can’t wait to keep helping other people deal with what I did.

Jim’s Story

Autoimmune

When I established my business, Deep River Snacks, I wanted to do two things: produce enough money to sustain my family and find a way to help my community. Giving back has always been a part of our attitude. About ten years ago, we started putting notes about significant charity causes in our parcels for our employees.

But in 2010, when my son Meyer was 6 years old, we found out that he was really sick. She experienced a sore belly, nosebleeds, and other signs. We kept taking him to the doctor for months for a whole bunch of liver tests and other things. My wife called me while I was at the airport getting ready to come home and informed me what was wrong. Meyer suffered liver illness that was caused by his own immune system. I didn’t know anything about liver illness.

No Thoughts

I didn’t know what that meant, and some days it still feels like it’s soaking in. With a lot of help from ALF, I slowly learned about this. And I knew it was time to get serious about what I could do to collect money, share the narrative of liver disease, and figure out how to rescue our son.

We established the Give A Chip initiative to give some of our sales to ALF and maybe tell more people about liver disease. One way we embody our tagline, “Because we give a chip,” is by teaching others about liver disease and supporting ALF. The Give a Chip program teaches individuals about liver disease and gives them an opportunity to help with research.

Some people just have bad luck in life, and as a person, you need to be there to help. You need to give a chip. I love getting emails from folks all throughout the country who read our packaging and get in touch with us. Some people are dealing with the same medical problem.

Help is everywhere

I just heard from the father of a boy with saMeyer’sr’s Disease. His other son was able to have a live liver transplant. It was quite emotional. Meyer loves dragons, so he made his own ALF Walk team called Meyer’s Dragons. They come out every year to help collect money. People you know, such friends, family, coworkers, and neighbors. They all walk.

We do everything we can to work with ALF to raise our voices and be there for others because it makes such a difference to know that you are not alone. You should aim to give more than you get.

Jason’s Story

My husband has liver cirrhosis because of drinking too much.

I don’t know when my husband got the first stage of liver disease.

Jason has been quite tired for about three years. Our family assumed he was exhausted since he worked hard and had trouble sleeping. We have been married for 15 years and dating for 2 years.

Even though I asked him to quit, he started drinking every day approximately ten years ago. I drank from time to time, but I could go years without it. Later, he went to the doctor, who gave him roughly 90 Vicodin pills every month. He also began to take my medicines. I have bulging discs and scleroderma. He began taking all of his and my medicines. I told the doctor that he was drinking and taking my medicines. And I had had enough, so I told him I was going to move out.

Time to Stop

He drank less, but that wasn’t enough for me. I began dumping his drinks down the sink. His doctor kept giving him Vicodin. The family was angry about this. He had bad withdrawals and would fall down. He even smashed the door to the shower.

I told the doctor to cease giving me the medicines. He quit drinking and using Vic after his family stepped in. About a year ago, he was diagnosed with liver cirrhosis. When his doctor ran more tests to make sure he was healthy, I eventually got him to see another doctor. He went to see his main doctor for ten years. He saw the doctor once a month. That’s at least 12 times a year.

His primary care doctor never treated his liver problems, and he never got a real yearly Profile exam either.

At last, free

When we eventually saw a new primary care doctor, he told us that he had stage 3 liver disease and hepatic encephalopathy. And he had stopped getting tests since he was going to die.

Even though I have a disability, I am now both its caretaker and main breadwinner.

I feel bad now, and I’m sad. I always try to be cheerful when I talk to him, but I have to treat him like a kid. And I have to drive it all over the place, even around the house. He was the head of the family. I have to make all the choices now because I can’t focus and don’t remember anything.

I wish I hadn’t drunk and had pushed him harder to see a new doctor.