Meagan post 1
What is it like to become a cirrhosis patient? It’s like, I’m still me, same body and face and places and people. But it reminds me of helping my 3rd grade daughter Abby with her math homework. It used to be that doing math was simple. You did addition, subtraction and you carried a one. We all did it the same and it made sense. But now, it’s Common Core; there are so many new steps that make it feel overwhelming, confusing, nothing is simple and nothing makes sense and by the end of the day I’m so tired. Sometimes, that is what having cirrhosis feels like – The same tasks need to be accomplished, but suddenly the process to get there has changed and become so much more complicated.
First is addition. You add in the doctors, appointments, insurance copays, and bills. Next, add up all of the new prescriptions that you need to remember to take, some with food and some never with food, add them into your daily routine in the morning and at night, maybe add them into your purse to take in the afternoon, and don’t ever forget, maybe adding an alarm to your phone.
Next is subtraction. Because cirrhosis also takes so much away. You lose people. When you get sick, at first people are supportive, they send flowers and cards, they visit. But when you don’t “Get Well Soon,” people become distant. My daughter’s father left, after 11 years together – not just due to me getting sick, but the strain was definitely a trigger. Then I had to stop working. People call you lazy when you don’t work, as though you would choose to sit home all day. As though being sick is a vacation, a luxury, a good time. Not working takes away your identity, your purpose, makes you feel less useful. And all of these things took away my link to other people, my social outlet, my CONNECTEDNESS. I felt like I didn’t fit anywhere anymore. I was “other.” A sick person. Different. All things subtracted from a life that had felt whole, but now was full of holes.
As a woman, I’ve never been overweight, but I was always on a half-hearted “diet,” as so many of us are. But liver disease changes that too. I’d always wanted to be “skinny,” until I became so sick that I couldn’t eat. I lost over 70lbs in just a few months, and was skin and bones and so skinny that it hurt to sit in the bathtub. I had my pants quite literally fall off of me in public – more than once. So, let’s add a big scooping of embarrassment onto our equation. A random memory defines a turning point; I was grocery shopping after getting stabilized a bit. I needed ranch dressing. I instinctively reached for the non-fat version that I always bought…. then realized, no. Not anymore. Even when it comes to the most mundane tasks, nothing is the same. I need the ranch dressing made with full-fat, all the calories, I’m wasting away here, I need anything I can get. I wondered, how did absolutely everything change so much? And I cried, in the middle of a grocery store dressing aisle. Cirrhosis is such a weird, complicated disease that even buying salad dressing becomes an emotional event.
Then, we get into more complicated mathematical equations. You’ll need to learn what labs are used to calculate your MELD score, a new equation that will become very important as a liver patient. You’ll start reading labels on every single food that you want to eat, as you add up your sodium, every day, staying under the magic number your doctor gives you. Maybe you have to watch other things too, like your sugars or fluids or carbs, oh my. So many things to keep track of, and all you really want to do is take a nap.
But… Cirrhosis also adds things to life. It adds a new appreciation for the little things. Doctors at one point didn’t give me very good odds. Doctors shouldn’t do this, even though patients ask for it, sometimes even beg for it. Human bodies are incredible, and diseases are unpredictable, making most of the predictions that doctors make not very accurate. My doctors threw out numbers of months and years, odds and percentages, and their math was all wrong because I beat those odds, and here I am. But during those early months after diagnosis, I felt weak. I felt fragile. I didn’t tell anyone but my mother, but I was scared to go to sleep at night, fearful that I wouldn’t wake up again. So I did a lot of thinking and searching, trying to make peace with these new scary feelings.
I counted out the years I might miss with my daughter, as she grew up. I wrote out letters for her, to read at milestones as she grew, in case I wasn’t there to guide her.
One by one I also wrote out letters to each person in my family, and a few select friends, saying anything I felt was unsaid. Just in case.
And then I decided, that now that I had realized all of the things I might lose, if cirrhosis didn’t let me grow into the old woman I’d expected to become, and how precious all of the things I had around me truly were – that it was time to start squeezing every bit of joy out of them that I could. There is no cure for cirrhosis. But none of us know our fate. I know what I’m up against, and I’ll fight it. And in the meantime, I’ll live. Because life is still beautiful, and it’s even more beautiful now, that I realize how truly grateful I am for every minute of it that I have.
Meagan's Place
Meagan is a young, 40 year old, woman with a young daughter. She faced sudden liver failure in 2016 which very nearly killed her. She is much improved but deals with many of the challenges common to liver disease patients.
The thing that makes her so special that we are devoting an entire section of our patient stories to her is that she is a gifted writer who is telling her story in hopes that it may help others with their personal struggle. We hope you will spend some time with her story and we invite your comments.
This is the outline of her story.
Outline: My Journey through liver disease hell
Post 1: Introduction post. Who is a Cirrhosis Patient? In this post I’ll give an idea of who I am - as a person, and as a cirrhosis patient. The post will give an idea of what kind of story line will be coming ahead. I hope to condense my story, giving a brief intro of how I was diagnosed, to where I’m at today, without a ton of detail, but enough so that someone reading will have some background going forward into the rest of the following posts.
Post 2: The struggle to get a diagnosis. In this post I’ll share my story of getting diagnosed with cirrhosis, and how incredibly difficult that was. All of the obstacles, all of the missed opportunities, all of the doctors who dismissed us. The frustration now, looking back, and what I wish could have been done differently – and the things that I wish doctors would think about and change now, in how they care for their patients with liver disease, so that they could do better.
Post 3: How it feels to have a new diagnosis. The roller coaster of feelings that comes with a serious diagnosis. The lack of information from the doctors. The process that a patient like me goes through, trying to learn how to take care of themselves. The fear, as you learn how to survive in this new world of cirrhosis where you get conflicting or no useful advice.
Post 4: Caregivers. It has to be harder on the caregivers than it is on the patients! I want to share some of how hard it is as a patient to rely on someone else. And I want to share what it’s like from my mom’s point of view. Most people don’t get what taking care of a cirrhosis patient is really like day to day.
Post 5: Relationships. How cirrhosis changes all of the relationships around you – it changed everything for me. As a mom, with my family, my daughter’s dad left, so many friends don’t know how to react to someone being sick and not getting better. The social isolation that comes from chronic illness. The challenges of trying to provide a normal life for a child while battling constant illness.
Post 6: Appearance: This is a big one that we recently discussed in a cirrhosis Facebook group. It feels shallow to think about, when you’re struggling with such life or death type of health conditions. But when you look in the mirror, and you don’t recognize yourself, due to weight loss, or the weight gain in odd places from ascites or edema, the hair loss, etc. That can really damage your self esteem at a time when you’re already really fragile, and it seems to be something that a lot of us deal with, but are embarrassed to talk about.
Post 7: The health care system. This is a major frustration for anyone with a chronic health problem. But with cirrhosis, it brings extra frustrations, since there are so few hepatologists, and liver disease isn’t well known by other doctors at all. How I wish that doctors would remember that we, as patients, need to be a part of the team, since we are the ones who will be seeing multiple specialists, we are the ones who need to be able to be proactive about our own health, we need to be able to know enough to take care of ourselves… yet so often doctors treat us as the bottom of the chain, as though we don’t need to know about our own results or health. I’m not sure who all will read my posts, but I’d love to share my ideas on how the system could work better 😊
Post 8: The shame of cirrhosis. I dealt with this right away. Even though my diagnosis is not related to alcohol, that was everyone’s immediate reaction – “I didn’t know you were an alcoholic?” And, even if someone is, that’s still a terrible thing to say. There needs to be more education about the many, many ways to get cirrhosis. So that people don’t have to feel ashamed of their diagnosis. Because too many feel that way. It keeps me from talking about my diagnosis.
Post 9: Loss of identity. When you deal with chronic illness, you lose so much. And those things all add up to losing your sense of self, in a lot of ways. You don’t feel useful, you lose your place in the world, you don’t know where you fit in anymore.
Post 10: Finding a new normal. After everything that I’ve been through, life is still good. The hard things make me appreciate the good things even more. Once you get over the initial shock of diagnosis, then the early stages of fighting to get your health stable – you get into a routine, you have to accept that you will not “go back to normal” again, and you start to adjust to a “new normal.” And that’s when you start to live again.
Post 11: Living with cirrhosis. What it’s like to live with cirrhosis. Accepting the uncertainties. Learning how to be hypervigilant with your health – without becoming a hypochondriac – is a difficult balancing act. It’s no use being healthy enough to live, if you’re not going to LIVE. So, you learn to do both.
Post 12: Finding Hope. Cirrhosis is a journey. And medicine and science is always changing, we’re always learning new things. I think that just as each individual patient can make huge improvements in their health by learning and making lifestyle changes – cirrhosis care as a whole is going to have huge improvements in care in the coming years too. There are a lot of things to be hopeful about, and positive about, and I want to share those things to close out the series. And definitely remind people to be organ donors!!
Good news from the Primary care docs treating fatty liver
I have been helping several groups doing research on what is happening with liver disease patients and I have been surprised by a trend that I have noticed. When a person first learns that they have a serious liver disease they reach out to Dr Google, our forum, and significantly to FaceBook support groups. I don't have numerical data, but I interact with multiple forums that reach thousands of patients so I have a window into what the day to day is like.
A problem we have focused on is that it has been the standard of care not to screen for liver disease at the primary care level, in the absence of symptoms. That means that the first time many people learn of their risk is being told that they have cirrhosis. Much of our effort has been spent trying to illuminate this as an issue. We are particularly concerned as the disease is showing up in younger people in the death rate statistics but we hadn't really seen movement in when people learn about the disease.
Read moreFirst NASH drug to report a successful phase 3 trial
It is very early and we don't know a lot yet but Intercept Pharmaceuticals has just released results of their Phase 3 test of Obeticholic Acid as a possible treatment for NASH.
This is a major step for us as patients. We all know the story. The doc says sadly, "You have cirrhosis, I'm sorry we have no treatment". This is a refrain we see retold thousands of times here at the Foundation and it is the path I have personally traveled. I've written that we are on the brink of a new day when we will have options. This is the dawning of that day.
Read moreBasic Liver Facts
Click here if you would like to see a short video of how liver disease develops.
Where is your liver
A large, complex, triangular-shaped solid organ, the liver is located in the upper right abdomen, just below the diaphragm and behind the ribs, extending across the midline to the left side. It is the largest and heaviest internal organ, weighing about 1.5 kilograms. The liver is the only organ with two blood supplies: the hepatic artery, which brings blood from the heart, and the hepatic portal vein, which brings all the blood from the intestines. Blood leaves the liver through the hepatic veins. At a microscopic level, the liver is composed of individually functioning units called lobules, containing areas with blood vessels, ducts, and intervening cords of liver cells (hepatocytes).
How does your liver affect digestion?
The hepatocytes, liver cells, manufacture bile, a yellow or green alkaline fluid, containing bile salts. This synthesizing and secreting function of the hepatocytes means that the liver is also a gland. Bile travels from the liver cells through a network of ducts to the gallbladder for storage and concentration – to as much as five times its original potency. During a meal, the gallbladder releases bile into the small intestine to assist with digestion and absorption of dietary fats. Bile also contains bicarbonate ions, which help neutralize acid carried from the stomach to the small intestine. Bile salts originating from the liver aid in converting vitamin D into its active form, which is necessary for calcium utilization. This organ is also pivotal in absorption of other fat-soluble vitamins.
What are the liver's metabolic functions?
Metabolism refers to the complex biochemical processes and reactions that take place in the human body. Carbohydrate, fat, and protein metabolism all require inputs from the liver, which stores glucose (derived from carbohydrates) when it is abundant, and through communication with pancreas releases it when needed, thereby ensuring a steady energy supply for the body. The liver also converts fats into an energy source for the body. This organ is the site for breakdown of protein into amino acids, as well as conversion of amino acids to glucose, fats, and proteins. Finally, the liver is responsible for the synthesis of cholesterol and regulation of cholesterol levels.
How does your liver affect blood clotting?
Bleeding within the body activates a complex system of plasma proteins, called coagulation factors, which promote blood clot formation. The liver is responsible for producing most of these coagulation factors. Some of these factors require vitamin K for synthesis, and the liver produces the bile salts essential for intestinal absorption of this fat-soluble vitamin. Uncontrolled bleeding may occur if the clotting factors are not produced or if vitamin K is not absorbed.
What other proteins does your liver make?
The liver produces most of the proteins found in blood. Albumin is a major protein made by the liver that plays an important role in regulating blood volume and distribution of fluids in the body. One possible result of liver dysfunction is low albumin levels, which can lead to abnormal fluid retention causing swollen legs and abdominal distension. The liver also produces ferritin (a protein used to store iron in the body) as well as proteins that bind to hormones, lipoproteins involved in cholesterol transport, and acute phase proteins involved in inflammation and infection.
What are the hormonal functions of your liver?
The liver has many key functions associated with hormones in the body. For example, the liver is involved in the chemical conversion of thyroid hormone into its most active form. Thyroid hormone is responsible for modulating the body’s metabolic rate, the speed at which complex biochemical processes and reactions take place. In addition, the liver secretes IGF-1, a hormone that promotes cell growth. Angiotensinogen is another hormone produced by the liver. This hormone is part of a complex system that regulates sodium and potassium levels in the kidneys and is involved in blood pressure control. In addition, the liver regulates hormone levels by breaking down and removing these chemical messengers from the body when they are no longer needed.
What is your liver’s role in breaking down unwanted substances?
Together with the spleen, the liver helps to degrade old red blood cells into breakdown products, such as bilirubin and other bile pigments. The liver extracts these products from the blood for elimination via urine and stool. When the liver fails to function properly, bilirubin may accumulate in the body and result in a yellow appearance of the skin and eyes, known as jaundice. The liver also plays a large role in detoxifying and breaking down toxic poisons, drugs, alcohol, and waste products. In patients with liver failure, these unwanted substances tend to accumulate in the body and potentially lead to toxicities.
The liver, an amazing organ!
A strong, working liver is vital for human health. This remarkable, hard-working organ and gland is responsible for a host of essential bodily functions, comprising critical roles in digestion and nutrient absorption, complex metabolic functions, protein production, and hormonal production and regulation. Moreover, it is the primary organ involved in the breakdown of every toxic substance your body encounters, whether you ingest, inject, touch, breathe, or otherwise come into contact with it, preventing accumulation of waste products.
Some Liver Facts!
- The liver can regenerate itself! As long as at least 25% of the healthy liver remains, it can become whole again.
- Not only is it the largest gland in the body, the liver is the most complex in function.
- We all know that alcohol consumption takes its toll on the liver, but did you know that cigarette smoking is bad for your liver too?
- A healthy liver filters about 1.7 litres of blood per minute.
- It contains 300 billion specialized cells.
- It can produce as much as one litre of bile per day. The body reabsorbs most of the bile salts at the terminal ileum and regularly sends them directly back to the liver for reuse.
- During pregnancy, the liver increases in size and weight to accommodate the changing metabolic demands and hormonal balance of the mother.
- At any given moment, the liver holds about 13% of the body’s blood supply.
- More than 500 vital functions take place in the liver.
- A healthy human liver holds about a two-year store of Vitamin A.
- Although attempted in 1963, the first successful whole human liver transplant occurred in 1967.
- In 1989, surgeons transplanted a portion of a living adult’s liver into a child, resulting in both donor and recipient having normal liver function. Since that time, adult-to-adult living donations occur with a portion of the donor’s liver replacing the entire liver of the recipient. Over time, both livers grow into complete organs. Although amazing, this procedure still carries some risks.
- At this time there is no medical treatment for liver failure other than transplant but an improved diet and the avoidance of harmful substances can halt and at times even reverse liver damage.
There is a lot of dietary advice but a good place to start is here
There is a tide in the affairs of men
Hopefully you clicked on the picture to hear the very short quote from Shakespeare. Sometimes I can't resist a bit of drama.
Since you have an interest in liver disease, I wanted to let you know that we have reached a real milestone in the development of the foundation. We intend to help change the way liver disease, particularly NASH, is managed and to save the lives of millions who do not know today that they are at risk.
Read moreThe DOOMSDAY CLOCK can we believe the odds are really better for liver therapies?
I recently wrote about my view that for the first time a cirrhosis patient could look forward to real medical therapies. A few folks felt that I was planting false hopes and that such miracles weren't going to happen. In light of that, I thought I might provide a broader view of the situation today.
Some of you are old enough to remember that not so long ago Hep C was unknown. We called the illness non A non B hepatitis. Today we have a cure. A miracle perhaps but also a lesson.
Read morePhysician education
This information is primarily for physicians but may be of value to some of our patients. As a patient, it is important to know that the interpretation of a Fibroscan score is not simple. The meaning of a test depends upon what caused the liver damage as we can see in this scoring guide.
In light of this, it is important that a qualified physician makes the interpretation of your test results. Some of the guidance available for physicians is found in these documents.
Fibroscan Physician Interpretation Training
Fibroscan Clinical Publications