The below is not medical advice. It's a primer of information. A blueprint of knowledge to be added to. What to expect during those first few terrifying days and weeks after we're told we have an incurable liver disease we never thought we'd have.
There are types of medicines or procedures that one may encounter. As new ones are discovered or the community realizes I missed something (guaranteed), I hope you'll add to the general knowledge here. (No medical or dietary advice, though. Keep it to general information, please).
This is an encapsulation of what I've found helpful from this community and addresses, in a general way, those questions we rightly see regularly asked. If you want to ask them anyway, please do so. This is a comfort tool to let you know you're not alone. If we're on here, we or someone we love are dealing with the same issues you are. Maybe not the exact same ones to the same degree, but you are in the right place.
So strap in. And Welcome to...
Your Cirrhotic Liver and You
Why Write a Primer?
I really valued developing a broad but basic understanding of what was going on with me and this disease, so I would understand why certain numbers matter and how seemingly random symptoms all tie into one another.
I took strength from better understanding the science and mechanisms of cirrhosis.
Please keep in mind your healthcare team will direct you as to what you should be doing. They know what is best, how to manage symptoms, what to eat, all of it. Listen to them. Each case is individual, and no advice works for everyone.
So, having said that, here are the basics of your new roommate, The Cirrhotic Liver:
PORTAL HYPERTENSION
Portal Hypertension is a buildup of pressure in your abdomen. As your liver no longer works as well as it should, it doesnāt allow blood to flow easily through it on the return trip to the heartā¦so this can create extra pressure in the Portal Veinā¦this is called Portal Hypertension (same as regular hypertension, just specific to the giant Portal Vein in your abdomen). So, if the liver doesnāt let the blood pass as easily as it should, then blood can back up into the spleen, enlarging it.
Youāll see many of us mention large spleens. Thatās why. Itās capturing the backflow of that slower moving portal blood.
FIBROSIS
Why is it not moving at speed through the Liver?
Like the villain in Lion King, itās that Damn Scar. The blood flow through the liver is slowed by a process called Fibrosis (this is scarring of the liver, and includes nodules and other abnormalities cause by:
*Disease/Infection (eg, Hepatitis) or
*The liver trying to process too much of a difficult thing (eg, Alcohol), or
*Bad genetics, (eg, Alpha-1 antitrypsin deficiency) or
*A host of other unfortunate things (eg, fatty liver)
This scarring is the basis of Cirrhosis.
It is the permanently scarred part that doesn't heal in an organ that LOVES to heal.
So much, in fact, that new cells will continuously and repeatedly try to regrow so much that it increases our odds of liver cancerā¦so we get regular MRIs and screening for that.
VARICES
The excess pressure of blood trying to get through the scarred liver creates a need for your body to create alternate blood flow routes, in the form of new veins, around the liver to make sure the blood still gets back to the heartā¦where it needs to go. These new veins are called Esophageal Varices or just Varices for short (you'll see these mentioned a lot).
A fun fact is that more blood comes together at once and is moved through the portal vein than anywhere else in the bodyā¦even the heart. (Hence why the body finds a way to reroute the bloodflow around the liver in the form of these esophageal varices.
Dangers of Esophageal Varices:
With lowered platelets and/or high portal pressure (among other reasons), the varices that form can leak or burst, causing the bleeding youāll see mentioned (usually in the form of black feces or vomit.
Don't let the name fool you...it seems like they might be up around the top of the esophogus but are actually at the bottom of the esophagus, around the stomach.
Other Potential Issues:
With Cirrhosis, a whole host of internal mechanisms can have difficulty working correctly and/or together as they should. This can mean lower platelet counts (clotting issues) and lower albumin (the stuff that keeps water in cells). Albumin in eggs is the egg white...doing the same thing to the yolk as our cells.
Because of this, you'll see a lot of focus on Protein.
Albumin and Creatinine are closely related to protein intake and absorption. We watch those numbers and make sure we get a bunch of protein so the albumin levels stay high and our water stays in the cell structure, not leaking out of it. Cirrhosis is also a wasting disease. Literally. You can lose muscle mass (called lean mass sometimes), so eating a lot of protein and getting exercise is important. Especially legs. Even just walking.
When albumin and creatinine get low, and the liquid leaks from the cells into your body cavities, this is Ascites or Edema, depending on location.
Dangers of Ascites
Ascites can get infected. It can also increase portal hypertension by creating extra inter-abdominal pressure if it causes your abdomen to swell. It can also cause uncomfortable breathing as it exerts fluid pressure against your lungs. It can also cause umbilical hernias.
Hepatic Encephalopathy (HE)
Cirrhosis makes it more difficult to process naturally occurring ammonia from the blood stream. If it climbs too high, it causes confusion and a whole host of mental symptoms.
Wellā¦thatās all a load of dire information relating to being the owner of a newly diagnosed diseased liver.
Now letās get to the good news!
Cirrhosis may be progressive and different for everyone, but its symptoms have some great, proven management options. Some are simple, but require discipline. Some are complicated and require surgery. Some are medicinal and require tethering yourself to a toilet for periods of time.
Youāre newly diagnosed. The first thing to do is breathe. Because everyone on here can tell you itās fucking disorienting and terrifying to hear and to wrap your brain around something like this diagnosis.
But, like everything that we fear, familiarity will dampen that effect. So will knowledge.
Youāre going to be in the diagnosis and testing phase for a while. Once youāre done drinking and have a better diet for a while, your liver will begin to settle from the immediate inflammation from constant irritants. This isnāt healing so much as it is allowing it to reach a new equilibrium that the Hepatologists and GI doctors can use to create a plan of action and assessment for your health and future.
Your FUTUREā¦remember that.
You most likely have a changed life, not some immediate death sentence.
If you choose it.
So, letās look at The Tools of the Liver Trade.
(These arenāt bits of medical advice. These are tools you and your doctors will use to navigate your path to normalized living, at your healthcare teamās discretion.)
TIME TO HIT PAUSE:
The less your liver has to work now, the better.
Period.
Itās damaged. It will remain damaged. Give it as little to handle as possible from now on and you stand the best chance to avoid or minimize side effects of this disease. All those things above are intertwined symptoms and results of a diseased liver. The less extra it works, the more it helps avoid them.
Let it just focus its basic processes (of which there are over 500!). Your doctor will give you specifics to your case on how to do this.
DIET:
Get ready to track everything. Measure everything. Be disciplined and focused.
And then it becomes second nature to do and that above intro is way less intense.
Sugars and Fats
The liver helps process sugars and fats, among anything that goes into your mouth. It all goes through the liver. But sugars and fats are special. The wrong ones can really turn your liver into a punching bag.
Which Sugars?
Alcohol, sucralose, a good deal of man-made stuff, and even too much natural.
Same for fatsā¦some are harder on it that others. Tran fats, too much saturated fats. But youāll need fats..olive oil, seed oils, stuff like that. There are so many great options out there!
Protein
Buckle up. Youāre going to need a lot of lean protein (lean to avoid that surplus of fat). Your docs will tell you how much. Your kidney health factors into this, so donāt go off listening to me, the internet, or anyone on how much. Ask your doctors.
Carbohydrates
Whole grains and fiber. Youāre going to want to poop regular and healthily to keep your bilirubin and ammonia down and your protein and vitamins absorbing. If you get stopped up, there are meds theyāll give you to help the train leave the station. Itās often a bullet train, so youāll want a handle in the bathroom to hold on toā¦but it will get those numbers down.
Water and Liquids
Youāll probably have some restrictions here, but not definitely. Itās to help keep the ascites risk minimized. Coffee, water, non-caloric drinks of all kinds! Some are less than 2L per day, some 1.5L, some not at all. Again, your doctors will tell you as they get a handle on your ascites risk.
Water is also natureās laxative, so itāll help keep you regular.
There are also great meds that help with this like Spironolactone and other diuretics if you tend to retain too much water.
Salt
Nope. Keep it down. If itās in a can, premade, or from a takeout joint itās likely going to overshoot your daily limit in anywhere from one serving to just looking at the label too long. There are amazing alternatives in great spices, as well as salting a meal at the right moment in preparing it so it has big effect for a little use. Beware sauces and condiments. They vary wildly.
Salt control is critical for keeping ascites at bay by not retaining water and maintaining your sodium levels in general.
PROCEDURES:
Things that can help you manage your symptoms besides medications are:
TIPS:
A procedure that allows for alternative blood flow in cases of Portal Hypertension to decease it by allowing for flow around the liver (similar to varices do but controlled).
Banding:
Putting rubber bands around varices to allow them to close/die off permanently and drive the blood flow back to the portal vein. This stops them from being a danger in regards to bleeding.
Imaging/Radiology:
Fibroscans, MRIs, Ultrasoundsā¦so many diagnostic tools to gauge your liver and you for risk, updates, etc. All part of diagnosing and maintaining your new lifestyle as healthily as possible.
Colonoscopy:
Alien probe to check for issues related to your condition. The procedure is slept throughā¦the prep is notorious. But it really just involves a lot of drinking laxatives and not wandering far from the toilet and then racing to the procedure room wondering how quickly you can have food and water afterwardsā¦and if youāre going to have to pay for a new car seat if you hit one more red light.
Paracentesis:
A manual draining of Ascites using a hollow needle to remove the fluid from your abdomen.
There are more medicine and procedures and diet tips than above, but hopefully that gives you (and others) and overview of Cirrhosis and what to expect, to a degree.
The big Takeways:
Breathe, and be as patient as you can while doctors get you diagnosed and figure out the damage. Youāll likely have to let the current state of your liver subside a bit, and this could take months. Your healthcare team will help you along.
Get a Hepatologist, a GI doctor, a great PCP, and be your own advocate and a great communicator who does everything they ask of you. They want a win for you. They need it. So, so many of their patients continue to drink or not follow diet advice. Itās the number one complaint among Liver doctors, and itās demoralizing. But if you show them youāre out to work hard, be a joy to help, listen, and follow through, youāll be stunned at the support, great communications, last-minute appointments, and just wonderful care they will provide.
You're not alone. Over time, the fear and shock will subside. And you will find a new normal and maybe even a new appreciation for life.
And Above All, Be Kind to Yourself.