Acronyms, Medication, Symptoms and Terms
anemia (pronounced: “ah knee me ah”) - not having enough healthy red blood cells to carry oxygen to the body’s tissues. There are different forms of anemia, each having it’s own cause. Anemia can be a warning sign of a serious illness.
ascites (pronounced: “uh cite ease”) - swollen belly due to fluid retention. This happened when Raylynn’s liver and kidneys were shutting down. When this happens, the doctors start to limit fluid intake. Measuring in and out fluid becomes really important for the doctors to understand how the organs are functioning/performing. If you take in 1000ml of fluid but only pee out 500ml, then your body is retaining fluid and that is an indication the organs are more stressed and declining.
bile leak (biliary leak) - this usually happens during a liver biopsy and bile leaks out of the testing location. It creates a lot of pain and may need a visit to the hospital.
biopsy - medical procedure, in this case on Raylynn’s liver to verify or confirm if the liver is in rejection. When this procedure is performed, it can be under sedation. They go in and take a piece of the liver, when they do this, if you don’t have a gallbladder, bile could potentially leak out of your liver into your body, creating intense pain. Raylynn experience this which is the reason that she ended up going to the ER early hours of Thursday morning. Indicator of whether a biopsy needs to be performed is if your liver enzymes through your blood work or continually high.
bilirubin -
blood transfusion - medical procedure of receiving donated blood through a narrow tube usually into your arm.
America Red Cross - find a donation center near you.
cirrhosis (pronounced: “sir oh sis”) - scarring of the liver which means that part of the liver isn’t functioning and potentially dead adding more stress to the liver. There are no symptoms of cirrhosis in its early stage. But may eventually lead to loss of appetite, being tired, nausea, weight loss, stomach pain, spider-like blood vessels, severe itching. The next symptom isn’t medically documented that I can find, but if you are always craving ice, this may also be a symptom. Raylynn preferred eating ice to drinking which describes a term called “pica” indicating anemia (iron deficiency).
coffee - particularly when consumed without added sugars or excessive fats, seems to have protective and restorative effects on liver function. However, the beneficial dose varies, and it’s generally recommended to drink it in moderation (about 2–4 cups a day).
compensated cirrhosis - refers to a state where the liver still performs some essential functions despite damage.
decompensated cirrhosis - indicates a more severe state where the liver can no longer maintain its functions effectively. Raylynn’s liver was decompensated. Her brother Aaron advised me to ask if her liver was decompensated. I did and they said it was. In basic language, if the liver is decompensated, you are dying because your liver isn’t functioning and in essence your body can’t get rid of toxins.
edema - water retention in your body’s tissue, which causes swelling, usually in your legs and feet.
gastroparesis - gastro means stomach and paresis is a general term referring to a mild to moderate degree of muscular weakness, occasionally used as a synonym for PARALYSIS (severe or complete loss of motor function). So basically it means your stomach muscles are weak and can range from slowed to total stop of digestion. This creates food to sit and ferment or rot in your stomach creating bacteria and symptoms are indigestion, nausea, vomiting, and heartburn. On Nov.5.2024 the liver doctors called to tell her that her enzymes were going up again (meaning her liver is still in rejection and not getting better) and to come to the hospital. She was checked into the famous 10th floor. Her doctor is telling her because of the gastroparesis, she can’t eat meat, no veggies, no fruits with skin, only white bread, no whole wheat bread. In the last week she’s lost 9 pounds which is also an indication of gastroparesis.
Barbara O'Neill "Caring For The Gut"
hepatic artery - one of 2 main blood supplies to your liver
hepatic portal vein - one of 2 main blood supplies to your liver
HE (Hepatic Encephalopathy) - brain fog, confusion and seeing things/delusions. This happens when the liver isn’t able to remove toxins in your body (poop/urine) and those toxins reach your brain. Raylynn was seeing things but didn’t want to tell anyone because she thought she was going crazy in addition to the liver issues, but it was the liver issue creating her delusions.
itchy skin - also known as pruritus is a common symptom of liver disease and can affect the whole body. Most common areas are arms, legs, hands and feet. It can be mild or drive you crazy where it’s the only thing you can think about.
jaundice (pronounced: “john dice”) - yellowing of your skin and the white part of the eyes
liver - largest internal organ and the main topic of this website
Barbara O'Neill "The Liver"
Barbara O'Neill "The Project Manager (The Liver)"
liver (Barbara O’Neill) - largest internal organ in the body. Only organ that has the ability to regrow.
liver enzymes: Elevated levels of liver enzymes in the blood can indicate liver inflammation or damage.
liver function tests (LFTs) - blood tests used to help find the cause of your symptoms and monitor liver disease or damage. The tests measure the levels of certain enzymes and proteins in your blood. Abnormal LFTs indicate that something may be wrong. LFTs measure enzymes, proteins, and substances produced or processed by the liver.
logo - uploading a link to my logo as a test
MELD (Model for end-stage liver disease) - its a way to “fairly” determine how sick the liver is and how urgent a liver transplant is needed. Basically the higher the MELD score the sicker the liver and the higher on the transplant list you end up. The score spans from 6 to 40, 40 being the worst. Raylynn’s score topped out at 42…how is that possible if the top out score is 40? Well Raylynn’s kidneys started to shut down, which pushed her MELD score to 42. She’s a super achiever.
mycophenolate - anti-rejection (immunosuppression) medication usually used as a co-medicine. Raylynn was prescribed this during her hospital stay Oct.17.2024 to Oct.19.2024. Now she is taking tacrolimus and mycophenolate. Improves both graft and patient survival.
NASH (Nonalcoholic Steatohepatitis) - is a type of liver disease that occurs when fat builds up in the liver, causing inflammation and scarring.
NAFLD (non-alcoholic fatty liver disease) - is a chronic liver condition that occurs when fat builds up in the liver, usually due to being overweight, rather than from drinking too much alcohol.
pagophagia - intense craving to chew on ice
pica - craving to chew non-nutritional items such as ice, clay, dirt or paper and is often associated with iron deficiency.
pruritus - itchy skin
rejection - begins when your body starts to identity the new liver isn’t your original liver and your body starts to attack the new liver.
Sphincter of Oddi Dysfunction (SOD) - this is a muscle that isn’t opening or closing correctly which in Raylynn’s situation caused continuous nausea, stomach pain and on-going fatigue. Fatigue in individuals with SOD is a common but often an overlooked symptom. The constant pain created a horrible sleep environment. Another odd symptom Raylynn experienced was pain in her shoulder.
sphincterotomy
sugar - this is my opinion, after you receive your new liver, AVOID sugar as much as you can.
tacrolimus - main anti rejection medication.